Monday, 31 December 2012

Reflecting on the year gone by...

Highlights and Lowlights:

The end of the most horrendous year, for not just me, but my entire family. I don't think we will ever encounter another year worse than this year. I don't think much worse things can happen, unless we have a replica of what happened but that is thankfully most unlikely.

The whole year wasn't dreadful though.

It began badly, being admitted to hospital with severe hyperemesis gravidarum (sickness) - I hadn't kept anything down for 4-5 days and it had been over 24 hours of throwing up even sips of water. I was admitted to hospital to go on a drip and get my fluids and salts etc back up. It was the admission to hospital that made me tell my employers at the time that I was pregnant, earlier than I had wanted to. It went horribly wrong after they knew I was expecting, and made life incredibly difficult for me. I was also suffering terribly with SPD (symphysis pubis dysfunction), and decided that in the end dealing with the SPD, the sickness and the stress of idiotic employers that the best thing to do was to quit work. It was stressful financially at first but we soon settled into things.

A good time however was our first foreign family holiday. Taking William to Benalmedena was certainly not the usual sun holiday that I had been used to, but it was a lot of fun and we really bonded. The weather was great, the food was great, and we went to some really fab tourist attractions, like watching dolphins performing to music and holding a baby croc!


My birthday was not great. I had got to a point where I was so uncomfortable and really had enough of being pregnant. Harry was lying awkwardly as we now know he couldn't engage and carrying him around was getting very difficult. I had a lovely visit from a good friend visiting from London, but we had to cancel the romantic meal we had planned as I was feeling so dreadful.

You all know the story around my going into labour, and the birth of Harry and the terrible, sad events that followed.
If you want to remind yourself here is the story in full:

Other memorable points throughout the year were the events for the Harry Cunningham Trust : the walk, the fete, the ball.

As well as all the fantastic awareness we have raised for the condition vasa previa, and the work with the National Screening Committee to hopefully begin screening pregnant women in 2014.
See here for the highlights of my media efforts thus far: 

Lessons Learnt:

  • Don't take anything for granted
  • In times of hardship, you learn who your true friends are
  • When hearing horror stories while pregnant, never assume that these things happen to other people, and not you.... It can so easily be you.
  • The grief journey is one that never ends, or gets easier
  • You will remember the one you have lost every single day
  • Do not test the patience of those grieving
  • Watch what you say to those who have lost: nothing will make things better, saying things like "you're young you can have another baby", "well he was poorly, it was for the best", or "let's try to forget about it" are NOT helpful
  • When someone has lost a baby at any stage of their pregnancy, it is still a loss. They are still grieving. Bear that in mind if you conceive before they do... it is an incredibly hard time and being happy for pregnant women when you are grieving the loss of your baby, at any stage, is more than difficult.
Hopes for 2013:

  • To continue to fundraise with the Harry Cunningham Trust
  • Raise further awareness of vasa previa and hopefully include the screenings at the 20 week scan for those women at risk
  • To remember Harry in positive ways
  • To spend more time with those who mean a lot
  • To enjoy every minute with William
  • To be happy....

Saturday, 1 December 2012

TV Adverts! Do they drive you mad?!

Just wanted to share something that I have found myself feeling these past few weeks, being bombarded with kids toy adverts on tv pretty much all day long.

So, I see the baby doll adverts... Seeing these little girls cooing over their dolls, rocking them to sleep, feeding them, changing their nappies. I remember loving my dolls when I was little. I used to love feeding them their bottle, with the milk that disappeared, dressing them in the lovely dresses I had for them, tucking them into their pram or cot.... It was my favourite game. And when I was little, all I wanted to be when I grew up (apart from an actress or ballet dancer) was to be a mummy. Just like my mummy. And I do feel really lucky to be a mummy, as I know so many people who are struggle with that life-dream. But, I wonder if I am alone when I see these adverts for these dolls now, when I think gosh I hope these little girls don't ever have their mummy dreams smashed to bits like I have. I hope they don't dream of being a mummy and get their hopes up, only to have them snatched away, moments after giving birth to their baby that they loved so dearly... I have to snap myself out of these thoughts as I worry about them eating away at me. I am told by my counsellor that these feelings aren't MY feelings, they are my grief, and they will pass in time.

I hope they do...

Watching bloody Pampers adverts gets me too, or formula milk adverts. A new mother in the blissful moments with her baby. I feel jealous. I had wanted those moments with Harry, and I didn't get them. I was cheated out of those moments, and here are those mothers parading their happiness on my TV. Ugh....

The one that was the most horrifying though, was watching an advert for a game called Dino Bite. A game where you are saving the baby dinosaurs from the massive T-Rex trying to eat them... And I quote from the advert "if you don't save the babies in time, you lose!".............. you lose? OK that's great. I lose my baby, so I am the loser. I remember sitting there after the advert a bit confused. Great. I am the bloody loser.

Friday, 30 November 2012

The support of the Great British public

I was in the local corner shop this morning and I read a headline on the front of a newspaper about the sniper who was jailed for possessing an unlicenced firearm, that he had bought back from war. The headline read "freed, thanks to the support of the Great British public".
This got me thinking about my campaign and my desire to raise awareness of the condition I was not diagnosed with until after Harry's birth, and about the importance of including screening for this condition for pregnant women. I need the support of the Great British public!

Now I know I have been Miss Media these past few weeks with my appearance on Sky News last week, my Daily Mail article and the fab piece in the Huffington Post but I need MORE! I need more mothers to know about the risk factors for vasa previa, and to have the knowledge to ask to be screened, to prevent the chance of other babies being taken too soon, like little Harry. I am on the case with the Screening Committee and have a good rapport going with those who are leading the review, which is currently under way.

 I am looking for AS MANY PEOPLE AS POSSIBLE to read this letter below and to sign the e-petition to show their support for the inclusion of the screening in antenatal care for expectant mothers:

  Dear all parents, would-be parents and anyone with an ounce of compassion; 

 If you have children of your own, think back to the time that you first held your baby. That magic moment, where you are consumed with love, adoration and amazement. 

 Imagine if that moment was completely different and you were faced with talks of severe brain damage and organ failure, and the likely possibility that your beautiful newborn baby was likely not going to survive. 

 Remember the joy of coming home with your gorgeous baby all bundled up in the wonderful going-home outfit, with plans for registering your babies birth, lots of visitors and coo-ing. Imagine, if instead you were returning home, empty handed, devastated, having to register a birth and a death, and then having to plan a baby's funeral. 

 All the hopes and dreams for your child, shattered and cruely ended so quickly, before you even have a chance to fully realise what is going on. 

 But - imagine if there was something you could do to prevent babies -like Harry - from suffering such utter devastation, and all that something was, was to have an additional 2 minutes at your ultrasound scan at 20 weeks. Is it not far more important to know that your baby is safe for delivery than to discover what sex your baby is? And, what if you, personally, could do something to ensure that pregnant women are scanned for this condition, which is more common than Downs Syndrome? (Downs screening is currently offered to EVERY pregnant woman and is far more invasive than the check for vasa previa) 

 All you have to do, is SHOW YOUR SUPPORT and sign this e-petition

Show those who are currently deciding whether this is something that should be screened for that you are in favour of this. It takes two minutes to complete. Now, think of that precious moment of meeting your baby, and imagine all those little vasa previa babies that could be diagnosed with your support today - and go on to live full, happy and healthy life. All it takes is two minutes to diagnose a future.

 Thank you 

Niki Cunningham

Sunday, 25 November 2012

Gifts of Christmas

This year, I have lost my enthusiasm for the festive period. Usually, you can't hold me back.

I love Christmas cooking, writing out cards and messages to friends who aren't seen as often as they should be, wrapping presents, Christmas church services, getting out the decorations, buying gifts, Christmas parties...

I've lost the love. I need to find some enthusiasm for the sake of William. He is really starting to understand the concept of Christmas so everything Christmas related is terribly exciting. I obviously love seeing him fascinated with Christmas decorations, or Christmas songs, stories of Santa Claus and he is the reason that I am able to get through it all.

I discussed my feelings about this festive season with my counsellor at the hospital. She asked me "what does Christmas mean to you?" - well for me, it is all about family. Spending time together. Making memories, keeping traditions. Maybe that is why I am finding it especially hard. The new part of our family that we were all looking forward to, is missing from our Christmas time. I feel angry about this. My son should be unwrapping his first presents, being utterly spoiled by family and friends, maybe even having a taste of his first Christmas dinner. Instead, we will be visiting his grave side and bringing small gifts to him there.

She said what about the baby Jesus? Do I find that reminder hard? For once, I don't find the baby association hard. I may do closer to Christmas when I go to church for the carol service and nativity plays. I remember in years gone by, finding the words of the readings about Mary giving birth and her pregnancy especially poignant after I had William. I felt the magic of motherhood in the Christmas story. Now I can't feel any magic. Just emptiness. My body betrayed me. My stupid body grew my placenta abnormally, and caused this horrific event. I like to attend church at Christmas to thank God for all I have in my life. But I don't know if I will this year. The church we held Harry's funeral. Thanking God? I don't feel like thanking God at the moment.  It all seems so wrong. Why did this happen to my family? Why is my little boy's body up in the cemetry and his spirit with the angels? Why is it my boy? What have I done to deserve this? All questions I struggle to get my head around. I believe everything happens for a reason, and can't fathom the reason behind all this grief. Not just mine, either. 

I decorated the Christmas tree yesterday, to try to encourage some festive cheer in myself. I always love it, and I did love it but with each decoration I faught back the tears. We have a huge part of our Christmas missing, and I almost feel wrong wanting to celebrate this time of year, when I should be missing Harry. Christmas focuses so much on the children and it is a reminder again that there is a child missing out on a wonderful day. I found William's special tree decoration; a blue one with "baby's first christmas" written on it. I found it so hard to place that one on the tree, as I couldn't help thinking that this should be for Harry this year. This is so much harder than I imagined it would be. I have seen a lovely silver Christmas tree decoration that you can use hand prints from your little one on, with their name on that I would like. Probably for next year as, being silver, they aren't cheap. I don't want Harry to be forgotten during Christmas, and he obviously won't be, but I think I would to include Harry in our Christmas traditions going forward. 

I haven't bought any presents yet and therefore haven't wrapped any. Mainly due to budget constraints, but also due to the fact that if I start Christmas shopping, then I will be accepting Christmas, and I feel odd about that. I have bought some cards but haven't found the motivation to write them. Usually my cards would have a little run down of my year, maybe some photographs. I don't really feel much like doing that this year. Everyone on my Christmas list knows about Harry, but I feel like this year has been so strange and bizarre, that I don't fancy writing about it, in a cheery way. 

I read a lovely blog called "Hello Grief" which has lots of really helpful ideas to those grieving. I read one idea about Christmas which helped me:

Find ways to acknowledge and remember the person who died. There are many ways to honor a person’s memory during the holidays, either by carrying on traditions or creating new ones. Here are some ideas to consider. What feels comforting is just as unique as grief, so choose the ones that feel right to you and your children.
  • Light a memorial candle. Consider their favorite color or scent when choosing a candle or decorate a votive. Invite children and other friends/family to share memories.
  • Write a card or letter to the person who died. You can also write a card to yourself from the person who died using the words or distinct phrases that are missed and loved.
  • On strips of paper write memories that family members have of the person who died or special gifts that person left with you. Loop the paper strips to create a chain.  Those who wish can read their memories out loud as they add them to the chain.
  • Wrap small empty boxes in holiday wrap. On each gift tag write a gift that person has left you with, i.e. courage, special stuffed animal, piece of jewelry, strength, a skill, etc.  Make a special pile, and add to it as you recall more “gifts” this person has left to each of you.
  • Hang a special decoration in memory of the person, such as a wreath or stocking. If a stocking is used, family members can place memories inside the stocking.
  • Buy a gift that the person would have liked to receive and donate it to a charity or social organization.
  • Wrap a big box in holiday wrap and make an opening in the top large enough to push paper notes through. Family members and friends can write memories and messages and place them in the box throughout the season. At a special time the box can be unwrapped and the memories/gifts shared with each other.
  • Keep a place setting at the table during a special holiday meal. Encourage each family member to decorate the place setting with something special, such as a flower, poem, card or memento.
  • Create a memorabilia table or corner where you can place photos, stuffed animals, toys, cards, foods, and any other kinds of mementos that remind you of your loved one.
  • Share a meal of the person’s favorite foods. If possible, involve your children in the preparation.  Food can be a great spark for talking about memories and stories.
In all of this, keep in mind that there is no right or wrong way to handle a holiday, only what feels right for your unique family.  Some people want to keep traditions while others prefer to do something completely out of the ordinary. Perhaps your family will choose something in between, a mixture of old and new.
I love all these ideas, and think that a lot of these will be really good ways of remembering Harry during our Christmas period.

I know that Christmas can be really hard at the best of times, but this year (along with thinking of Harry) my thoughts will be with all those families with an empty seat at the table, through death or separation. It is so hard but I hope that it will bring everyone closer, in everyone's journey through this painful time.

Friday, 16 November 2012

Supporting "World Prematurity Day"

When Harry was born and taken to the neonatal unit, I experienced some very strange emotions and feelings, that I had not experienced after having William.
I had gone from being pregnant and expecting a healthy baby to suddenly having my hopes and dreams shattered.
Being the "control freak" that I am, it was very strange to have my newborn baby taken away and be cared for in his early days by a) someone I'd never met, b) away from my watchful eyes, c) carrying out procedures I had never heard of and didn't understand.
It was very strange. I wanted to see my baby. To hold him. To take him in, his smell, his face, his sounds.
Not just that, but the fear of what the outcome might be. Waiting for those three hours to learn the prognosis for our son was a strange time. Hoping for the best. The not knowing.

This experience is not exclusive to parents who give birth to a baby who has experienced a birth trauma. Parents who are thrown in to the world of premature babies experience the same emotions.

So as a "neonatal user" I have become a member of a wonderful group of parent, SNUG, at Exeter's hospital. (Supporting Neonatal Users and Graduates). Since being a part of this group I have had my eyes opened to a new view on parenting: the premature baby parenting. Tomorrow is the World Prematurity Day and after meeting some wonderful parents of premature babies I thought I would do my bit by spreading the word about premature babies.

What a lot of pregnant women don't realise is that having a prem baby could quite easily happen to them. 15 million babies each year are born prematurely, and 60,000 of those are in the UK. That is a lot. Please take a look at the Bliss website with more information about World Prematurity Day and what they are trying to achieve.

These mothers are thrown into a crazy world, and to help you understand a view point of how that feels I have selected a few birth stories from the blogs that I read for you to see the birth stories of a few premmie mums. I hope you will have a read, these women write so well and each of their stories is fascinating, emotive and they are so brave to share their stories with others:

A lot of people say to me "wow you are so strong", "you are so brave", "I couldn't do what you're doing".... well, the strength I have is similar to the strength required by premmie mums. Watching their baby, day after day, hoping for the best, and really taking a new perspective on life. I had to have strength for Harry and sadly he didn't make it, but there are many mothers who have to keep that strength going for their babies, day after day, week after week.

I admire these mothers so much. Motherhood isn't easy at the best of times, and most mums take for granted the wonderful feeling of being able to take their babies home, and to watch them sleep in their moses baskets and to feed them yourself and change them yourself, rather than watching someone else do those things or to have to ask permission to hold your baby.

Then, as these babies are born too soon, this often means the baby won't have fully developed, and that they might have ongoing health issues. I was shown this:
A great graphic that shows development of organs based on gestational age. Note that the brain, eyes, and lungs take the longest to develop.

When a baby is born prematurely, these processes are interrupted and must continue to develop in an unnatural environment; the wired world of the NICU. It can be so hard to comprehend but it's important to understand that even though the preemie may look like a smaller, perfectly formed little baby, there is a lot of development that still must happen.

So on World Prematurity Day: Give a thought to those many mothers whose baby are/have been on the NICU and have a completely different experience of being a new mum. I take my hat off to you all xx

Thursday, 15 November 2012

Tis the Season to be Jolly

Christmas always used to be one of my favourite times of year. Spending time together as a family, eating lots of mum's delicious cooking, watching Nanny drink too much by lunchtime ;-) watching everyone open the presents I'd spent ages picking and wrapping, having a lovely nap by the fire and watching rubbish on the TV.

Last year, we knew we were expecting another baby, and we spoke frequently about how next Christmas would be so different. More presents to buy, an extra seat at the table...

When we lost Harry I read a lot of "guides to grief" and one of the things that it mentioned was milestones, like Christmas, birthdays, anniversaries, etc. I could understand the birthdays and anniversaries thing... the birthday thing is going to be hard... Harry's special day... and every angel-versary of Harry's is hard... I remember him every Sunday morning, and every 10th of the month. The 10th June is also my Nan's birthday, but now it is Harry's angel-versary. I want to do something really special, each year, to mark that. But that's another story... What I couldn't understand was the Christmas thing. Why would Christmas be a hard time? Anyway, after I had tried to understand the Christmas thing I forgot about it.

Until, this weekend. We decided to take William to see Father Christmas at the local garden centre, where we had heard the grotto they had was "awesome". William was really excited. This is his first proper Christmas where he totally understands what is going on. The prospect of meeting Father Christmas, and telling him what presents he wanted was a bit overwhelming for him. Anyway, we got there, and had a wander around the Christmas decorations section which were amazing. I saw some lovely little baubles and said to Harry's Dad that I thought it would be nice to get a little wreath of baubles to put up at the "castle". He had a lovely idea which was how about decorating the tree that grows next to where Harry lies, or even getting a little Christmas tree to put up there. What a lovely idea. Then it hit me. This is what they meant.... Harry isn't with us for Christmas. This was meant to be his first Christmas. This is our first Christmas without him. Ugh. I felt awful, suddenly. I couldn't stop the warm tears just falling out of my eyes. I wasn't sobbing or  anything, but I couldn't stop the tears. But we were in the queue for Santa's Grotto so I needed to get a grip because little children, excited to meet Santa with their parents, don't need to see a grown woman crying in a garden centre. When William met Santa, it was so magical and so perfect. I was so pleased I could give William this wonderful experience, and make such a fantastic memory for him to treasure. I got very emotional, and then remembered Harry. William is very lucky to experience this wonderful moment. But Harry will never get to share this special moment with William, like brothers should do at Christmas. So, anyway, that was the beginning. Then, it struck me again, in Tescos, when I saw the poinsettia plants, and again with the advent calendars. 

William frequently asks us what we would like for Christmas. A lot of other people have also asked me what I would like. Well, what I would like is Harry back. Does that sound ridiculous? Out of anything I could possibly have I would like one more day with my little boy. Did you ever see that film, "A.I - Artificial Intelligence" ... well that scene at the end, when all he wants is to spend one whole day with his mother? Well that's what I would like.... with Harry. (Click here for the link to this scene)  But, as this is rather unlikely, I would like to be pregnant again, so that I can feel like my life has some kind of forward driving direction, as I feel like I am currently in limbo, so discovering that I am expecting another baby would be the best Christmas present that I could ask for. This month was another cruel month. I have been taking my metformin, which makes me feel so ill and means I have had to give up all sugar and carbs to get through each day that I take it without having a very upset tummy. We have been doing everything that was recommended. Then, my period was late! Every day that it was late, I felt more and more excited that my wish might be coming true. I started to notice symptom after symptom, but every test I took was negative. I thought perhaps I was testing too early, so went to the doctors for a blood test, and he really believed that I was pregnant and told me that he was keeping his fingers crossed for him. I started to think about parties I had been invited to, and I wouldn't be able to drink at, or planning out my due date etc. But then, I went to the bathroom, and there it was... what a huge disappointment. I felt absolutely deflated. Empty. And very, very sad. What a crash back down to earth. I had a massive hug from Harry's dad, while I cried, not knowing what else I could possibly do to achieve the dream I am clinging on to.

So, Santa, as I am trying so hard to be a good girl... I don't want a lot for Christmas................ All I want for Christmas is a lovely positive pregnancy test... please :-) xxx

Learning from "mistakes"

In my last post I spoke about the investigation carried out by the hospital, into the care that I received during my labour and birth of Harry.

I was really unsure about how I would feel about this meeting, but now as I have had to visit "The Centre for Women's Health" so frequently since having Harry, it wasn't the visiting the hospital that I was unsure about. Thankfully, I had taken wise advice and left super early so I could park easily as my appointment was in visiting hours, and I know from previous experience that parking at this time can be impossible. I was already relaxed from this, and felt fine going into the hospital. The security man on the desk was really smiley and happy and made me feel at ease, instead of the blank, unfriendly faces usually greeting your arrival. I waited in the lobby area watching all the pregnant ladies coming to be scanned, or those visiting newborns and their proud parents. I saw one man whose wife was on the labour ward. He was off to get a meal from the cafe and the nervousness and excitement was all over his face. Bless him, I thought. He has no idea of what lies ahead, I wonder how he would cope if things went wrong. I hate that I think like this now. But I can't seem to help it.

I was meeting the senior midwife and the "governance lead" at the hospital, and we held our meeting in the midwife's office, on the pre and post labour ward. The same part of the hospital that I spent the night on after having Wills, where I had stayed when I had a dreadful stomach bug early in my pregnancy with Harry and also where we stayed during Harry's short life. I wasn't saddened by where we held the meeting, as I felt like whilst this place holds a variety of memories for me, it is also where I need to come to have any future babies and the place where I can try to make a difference within.

Anyway, I had met with the senior midwife before to discuss my complaint letter, and while I hadn't met the governance lead, we had held several telephone conversations and emails. Immediately, I felt at ease as they were really friendly and smiley and was offered a cup of tea. They told me that this meeting was to be led by me and any questions that I had. We talked about the report and how I had found it hard to learn about the number of issues raised. I spoke about how I think it is a huge step for the hospital to be so open and honest about where they feel they have fallen down and to willingly address areas for improvement.

We spoke about each point of failing by the team caring for me, and spoke about the steps being taken to resolve these. In the main, it appears the hospital are refining their existing policies and procedures inline with the care I received to improve care offered to other mothers, in labour. For example, as I was left without being monitored for four hours... it says in their  policies "a mother's vaginal loss should be monitored regularly" - now they have made a change which now say "a mother's vaginal loss should be monitored regularly, at least every 30 mins, especially when the mother had an epidural fitted". So that reassures me. Likewise for the placenta being examined. The policy says that "a placenta should be examined after birth" it doesn't give a time frame. But now it does and explains it should be checked so that the infant can receive "applicable care for example in the case of vasa previa". Seeing those words in their policy document made me proud to see, knowing that Harry's little life was now improving the care received by other mothers and babies. The other points where policies are already in place, but weren't adhered to, staff have been reminded of their responsibilities in newsletters, and in training environments. 

We then went on to talk about those who cared for me, and how they had been scrutinising their actions, as to whether they had anything to learn from this case, and have been given applicable supervision where necessary.

We talked about the work of the Trust and our donation to the Neonatal Unit, and how wonderful the doctors were. We also talked about the support group I had set up and how I wanted to help other mothers not feel so alone as I had done. We spoke about the National Screening Committee and how we are working together to change the way vasa previa is screened for.

I felt good leaving the meeting as I felt that all I could ask to be done was being done and that the hospital were trying to learn from their mistakes and things seemed to be going in the right direction.

I walked out the office and began to walk out towards the exit. There coming down the corridor was a mother in a bed being wheeled to the post natal ward. She looked ecstatic. I felt hugely envious. Behind her was the same Dad who I had seen in the lobby, pushing the tiny cot with their new baby in it. I felt like I had been punched when I looked down at this dear little baby boy. A beautiful baby. I smiled at the proud father, as I struggled to keep it together. I can't wait to be that mother being wheeled back to the ward with our newborn baby. I hate that the last time I was wheeled back from the theatre I was in total shock, after being told our baby may not survive. But as I said, this place holds lots of memories for me, good and bad. But it is now about making sure that Harry's short time makes a big difference to others, and I need to be strong to make sure that happens.

Thursday, 8 November 2012

Worse than we could've imagined....

Last week we received the official investigation back from the hospital, into what happened during my pregnancy and labour with Harry that ultimately cost him his life.

I had accepted the fact that Harry had died because I had the condition, vasa previa, and during labour my contracting uterus around his head had caused a major vessel to rupture as my placenta had grown his umbilical cord in an usual place and this was growing over the exit to my uterus. I had seen the blood but had always thought that blood was mine, and until Harry was born it appears that all the health care professionals had too.

After reading my notes and writing complaint letters, and meeting the senior midwife in the hospital, it started to become clear that there were a few points where things should and could have been done differently.
One of these points was this idiot doctor that I had. When he tried to break my waters, it was ridiculously painful and when he decided I needed an epidural he snapped off his gloves and walked out. Both him and the midwife examining me could feel something in front of Harry's head. We all know what this was, now... but why did he not pick this up when he scanned me in the labour ward? This is something that will plague me forever, but I understand this doctor is no longer employed at the hospital so that makes me feel a little more secure.
The other point was that I was left to bleed for four hours. I had a catheter fitted after my waters broke at 5.30pm and I was not checked again until 9.30pm when we discovered the bleed. Apparently, a labouring woman's "loss" should be checked every 30 mins, especially if she has an epidural fitted. That is a fair few checks missed. And it's not because she was rushed off her feet. We were her only patients.

When I received the investigation via email, I was feeling nauseous. What if the investigation said that nothing could have been done differently. What if there were huge findings that were ultimately the cause of Harry's death. How will I feel? What will I do? These thoughts rushing through my mind.

I open it. I scan read it for the "information". I find what I am looking for.... wow. So many more things that I was not aware of.

I have cut and paste this from the document I received:
Care and service delivery problems
  • Emergency bell not used to call for assistance in the room following vaginal (PV) bleed.
  • Midwife left the labour room following a significant PV bleed.
  • No ‘in room’ matron review or matron ‘fresh eyes’ on CTG.
  • No CTG sticker used by Registrar during review at 22.00.
  • Fetal scalp electrode (FSE) applied but abdominal transducer not unplugged resulting in fetal heart (FH) trace recording at 20bpm above the actual rate.
  •  The time, from decision to request a review by Specialist Registrar (SpR) following the PV bleed and VE, and his presence in LW room for the review, was 20 minutes.
  • ‘Category 1 caesarean section’ 2222 call not put out when changed in theatre from category 2. 
  •  Placenta not examined until HC transferred to NNU and NC out of theatre.

Contributory factors
Ruptured vessel from vasa praevia.

The decision to go to theatre was initially graded as category 2 and as such all appropriate people had been contacted to attend theatre, including a Paediatric F2 (junior doctor). Due to deterioration of the FH, as observed on the CTG, the operation was upgraded to a category 1 caesarean but the guidance, to call 2222 for a category 1 caesarean section, was not followed. Had this been done the neonatal registrar and a neonatal Matron would have responded and attended theatre as soon as they were able to. (The doctor arrived when Harry was approx 25 mins old)

It was thought that the earlier blood loss was maternal; most likely being due to a placental abruption yet, at surgery, there was no evidence to support this view. It may have helped the neonatologists in their treatment of HC to know that there was no evidence of an abruption, generally indicated by some shearing of the placenta from the uterus and a retro-placental clot. However, the Neonatal Registrar does not consider that this information, if provided within the first 25 minutes of HC’s life, would have made a significant difference to the resuscitation efforts being made without that information. (As he had already lost such a lot of blood already)

Although, as is usual practice following caesarean section, blood was taken from the cord for blood gas analysis (pH), the placenta was not examined until both NC and HC were out of theatre. While it is not unusual, in the absence of maternal bleeding, to postpone this examination for a short time, in this case the early recognition of vasa praevia, with a visibly torn vessel, may have influenced the treatment choices for the neonatologists. The Neonatal Registrar agreed that, had she been made explicitly aware of the vasa praevia and torn vessel, she may have considered giving blood earlier but is unsure that, if blood were administered sooner, this would have changed the outcome for HC, given the significant loss of blood that he had already experienced.

 * * *
So, along with the fact that I felt the Gynae doctor who scanned me in labour should've picked up the vasa previa/velamentous cord insertion, the midwife should've checked me more frequently, the CTG traces (in hindsight) show decelerations from the time my waters broke, and now the change of category for my c-section delivery and the non-diagnosis of the cause of the bleed until later... along with the clip they used on Harry's head to monitor his heart rate causing issues with the reading on the CTG monitor, to be incorrect by 20bpm as they didn't remove the monitor from around my bump.... 

Good Lord. How on earth am I ever going to be able to trust someone to deliver a baby again? So many errors. So many people not doing their jobs correctly. How did I feel? I felt numb. I didn't feel angry like I thought I would. I wasn't sad. I think I was shocked. But mainly I felt the feeling of being robbed all over again. If only, if only... I wish I could stop all these "if only"s... things can and won't ever change for my Harry. What has happened, has happened, and nothing can change the result for my little boy. But what can change, is to ensure this NEVER happens again to another family, waiting to meet their little boy.

At first I felt like meeting with the hospital would be a waste of time, what could I get out of it? I know what happened now... But after a few days of considering it, I have decided to go for the meeting. I want to know EXACTLY what is happening to ensure this never happens again. 

My meeting is next Tuesday. I will keep you all posted.

The Power of Music

Music has always had a profound effect on me. I can always relate to the lyrics and find singing along really powerful. I have always loved "love songs" and found them useful during difficult relationship times in the past.

Since learning to drive, one of my favourite things (when I am alone) is to turn up the volume on my favourite songs and sing my heart out. One of my favourites for William was Adele's "Make you feel my love" as I felt that I truly would do anything for my boy and I love him more than anything, a real unconditional love.

As I have mentioned previously in my blog, I spent a lot of time pouring over songs for Harry's memorial service. It was so important that I got the music right. We weren't having hymns as none seemed right and I wanted it to be perfect for my little man.
Here are the songs we used:

And, as I have mentioned before I find it incredibly hard to listen to these songs now, as when I hear the words I am transported back to that hideous day that we buried our little boy and I sit here now with tears down my face as I stupidly made myself listen to them. The power of music, it's so powerful and emotive.

But, yet I do do it to myself, and not infrequently. When I am on my own I find myself searching songs on YouTube to listen to, and to cry and to feel sad. It's like my private grieving time. And music helps me do that.

Here are some others that I have found, and find appropriate:

Celine Dion - Fly - it actually is too painful to listen to all the way through, for me

But a few weeks ago, while putting myself through this torture as I do, I found a song that was perfect. And as I listened to it, I saw a link on it's YouTube site dedicated to a baby. I watched the video montage this family had made and was curious about their story. I then saw a video that they had made for a TV show about their experience and as I watched I was saddened to hear their story. A family, with twin girls, and another girl were expecting another baby, another girl - Audrey Caroline. But during their pregnancy they learnt that this baby was too poorly to make it in the world after birth, if she made it to birth. They were advised to terminate, but as Christians they felt they couldn't go through with it and decided to leave it in God's hands. She wrote a blog about her experience as I have, and she talked openly about how sad it was to know her baby wasn't going to live. They gave birth a couple weeks early by planned C section and their baby lived for two hours and met all her family, giving them the chance to take some wonderful photographs, and create memories. Their experience has strengthened their faith and as a result she has found a career in writing about her faith and her experience as a bereaved parent, starting from her blog and now she has three published books.
The father is in a band and wrote a song about their loss and this is the beautiful song:

Please have a listen, it's amazing and this is my perfect song for Harry.... xxxxxxxxx

Tuesday, 6 November 2012

The impact of others...

I know I have said this before, but I really do feel like a different person since losing Harry. Perhaps I became a different person after having William. Perhaps motherhood (and impending motherhood) can change a person. And certainly, bereavement absolutely changes a person.

My personality has changed in that I can see so much good in people. I have been shown so much kindness and so much love and support that I want to be able to offer that back. On the flip side of that, however, is my patience. Boy did I have little patience before, I have a teenytiny amount now. I have realised that life is way too short. It can be taken just like that. So, why waste your very precious time on idiots? This is something I feel very strongly about but balance that with the seeing the good in people and you have a bit of a conundrum.

The Trust I have established in Harry's name is doing so well. We have been overwhelmed by the generosity of others, both in monetary terms but also in giving their time. On the other side though, I have seen some rather odd behaviour.
Now, I know that I can speak honestly here, and I have been highly praised for being so frank and open, and this really does help others work through their own troubles. I have been quite frankly shocked at the behaviour of some people since losing Harry. I won't mention any names as that would be ridiculous, but let me tell you a story. Harry's Dad was told about someone who had been bad mouthing me behind my back, saying that I am cold, unwelcoming and unfriendly and he was told about this because he was disgusted that someone would speak so ill about someone without saying it to their face. They went on to add that no one could possibly understand what I am going through and that they should keep their mouth shut until they have walked a mile in my shoes.
Other behaviour that has been shocking is when someone told me "perhaps we should try to forget about what happened so we can move on".... Forget?! Erm, I don't think I, or anyone else who has been affected by this, will be forgetting about what happened, ever. It is so strange to imagine how some people think.

At the Ball at the weekend, I met again with Harry's wonderful doctors, whom I absolutely adore. They were presented with a cheque for our first donation. An amazing £6,000. One doctor told us that when he was handing over to his colleague he said "you're in for a night of it here, but it's alright because the family are wonderful". I was shocked by this comment as I had given no thought about how to behave at the hospital when finding out what happened to Harry, my behaviour came naturally. I asked what he meant, and he told me that quite often in circumstances such as these, parents become aggressive and angry and the situation is very hard to manage. I honestly can't imagine how anyone could act any different when they're baby is ill, but then perhaps Harry had given me some strength to hold it together during that difficult time. The doctors also went on to tell me that they had been criticised by the nurses about the level of care they were providing to Harry. They were told that it was unfair to prolong Harry's life like they were, because he was clearly a very poorly baby that wasn't going to live for long. The doctors told me they did what they could, because they wanted to wait for us to decide when the time was right for Harry's treatment to be stopped, and for him to go peacefully with his Mummy and Daddy. How can I ever thank them for that? Truly amazing.

Like I mentioned earlier, I have been amazed by the kindness and generosity of others and this was reflected at the Ball as we were able to raise a further £3,000 for the Trust which smashed my target of £1,000 out of the water. Fantastic news, and it really spurs me on to hold another Ball next year and keep on raising lots and lots of money for the wonderful neonatal unit in Exeter.

I also heard about a lady who lives locally who recently had a baby in Exeter hospital. She, like me, went into labour that didn't progress. She, like me, had a transverse lie baby, whose head wouldn't engage. She, like me, was scanned to see what was happening during labour but THIS TIME, because staff at the hospital are so aware of what happened to Harry, they were able to diagnose vasa previa and give her an emergency c-section and the baby's life was saved. A wonderful story that encourages me to continue making others aware of the condition so that babies are able to live.

Saturday, 27 October 2012

How my life has changed in motherhood

I can vaguely remember life before motherhood and to be honest I am a very different person now. Motherhood really has changed me.

I remember discovering I was pregnant with William and what a whirlwind that was. I remember worrying myself about every single niggle and pain wondering what was happening to my body! I felt strange watching my belly grow bigger and bigger after years of trying to keep it flat I was watching with wonder as it grew and grew. Feeling the horror when I first discovered my stretch marks and how many came to follow those first few. The nervousness and the excitement of those final weeks waiting for labour to come along. I think as a first time mum it is all new and exciting and it does overtake your life a bit, especially when you've not got much else going on around you!

I remember the day we went into hospital to have William. I was so unsure of what to expect, but after a long, drawn out labour, we were whisked to theatre for a forceps delivery and little William had his cord around his neck, so was a bit of an odd colour. He also needed a bit of resuscitation but was soon shown to me, my little boy. Bless him. Then the most amazing feeling of contentment and love and adoration consumes you as you gaze at their beautiful face. I know everyone feels this way about their own baby, but he was beautiful. I remember him opening his dark eyes to peer at us and just feeling so emotional, happy and elated. I remember being so proud to show him to my mum when we were taken back to our room, and when my dad saw him for the first time, and we told him we had called him William Lawrence (William after my great grandad, on both sides coincidentally and Lawrence after my Dad). He burst into tears and it was something I will never forget. I remember the drive home from the hospital the next day, we drove so slowly as we had such precious cargo on board.

But then as I was breastfeeding William, I felt as though my own life was now put on hold. I felt like I always needed to be close by incase he needed a feed. Breastfeeding William was something I had felt so so passionate about. I had wanted the very best for my new baby, and what could be better for your baby than mummy's own special milk made just for him. We had been taught all about the benefits of breastfeeding and to be honest, I didn't give it a second thought. That was what I was going to do. I am always one to think "if you're going to do something, do it 100% or don't bother" and I initally found breastfeeding very hard work. William wouldn't latch properly and he seemed to be constantly hungry. It turned out that William had tongue tie and needed to see a specialist to give it a snip, but it was quickly fixed and he began to feed well.

You can ask anyone who visited me in the first few weeks, I was not myself. I didn't want to see anyone. I felt horrible due to gaining so much weight, not having any money to sort out my hair or buy new clothes, I was tired and irritable from a serious lack of sleep and on top of that I didn't want to allow anyone else to look after William as he was my precious baby and I didn't want to let him out of my sight.

This wonderful vision of motherhood you have when you are first pregnant is nothing like the reality. You envisage lovely sunny days with nice strolls with your pram, the lovely baby smell, buying new outfits, you know what I mean. The reality is very different: colicky baby, screaming all night, no sleep, bags under your eyes, no energy, no money to buy those new outfits for the baby and not feeling much like taking the baby out incase you see someone you know and you look so hideous. It makes me smile now to listen to first time mums spilling out their hopes for their babies, we have all done it. We think that we have all the answers to baby/child problems, and the reality is you will do anything that makes your life easier or quieter. I know, as I have done it myself, watching badly behaved children in shops or restaurants thinking "my children will never do that because I will do this" but when it is actually your children you will feel very different. Nothing can prepare you for having your own, I did a bit of nannying in Australia and helped my auntie when I was just a kid, take care of my cousins when they were babies, I thought I knew it all... how wrong I was!

I was finding motherhood exhausting, challenging and relentless. I loved my baby but I was finding everything very hard. It was during a routine health visitor appointment that we were discussing an upcoming visit from some family members who were to be staying in our house, that I burst into tears and realised I was finding it all too much. She felt I might be suffering from postnatal depression and she started to help me find a way out a dark time.

This is not to say that I don't enjoy motherhood because I do, it is such a rewarding job. I love watching William learn something new and seeing him grow into a proper little boy. It is wonderful but exhausting. Now I can see the joy that motherhood brings, the lessons it teaches and the happiness your children bring to so many. The immense sense of pride when you see them learn and achieve, and how content you feel watching them sleep.

But, given the difficult labour and the postnatal depression, it is no surprise really that when I discovered I was having Harry I went into a bit of a meltdown. Things had started to find a bit of normality and I was beginning to feel a bit more like myself. We had gotten pregnant very quickly and when I started to imagine myself with a newborn AND a crazy, active toddler I started to suffer with anxiety. I started to get panic attacks quite regular and had my health visitor come and try to put things into perspective.

Can you imagine the guilt I now feel that I was worrying myself about how my life would be with two children. There I was wondering how I would struggle to manage life with two children and yet now I am struggling to manage life without one of them. I would say things like "two? what am I thinking", others would say "you will have your hands full" and I honestly used to feel so panicked and really not prepared for life with two children. Now it makes me feel physically sick to recall those feelings, as obviously I would give anything to have my Harry here now with my William, playing together nicely.

This week I met with a friend who has two children: one the same age as William and one the same age that Harry would be. It was interesting to see her manage with ease and show me that all my worry was for nothing and that life with two children is a challenge, and even more tiring and consuming but it is something that can be done and enjoyed.  I thought I would find it hard to see a baby who is the age Harry should be, but it wasn't. I had been worrying myself about seeing babies and how I might feel, but in actual fact I feel that I am at a place on my "journey" where I have accepted what has happened and now I feel like these little babies are all precious in their own way, and they aren't Harry or reminders that Harry is not here. They are little lives of their own making people smile and I could actually enjoy watching her and spending time with her.

It was seeing her that made me consider how I would have coped with two, and all the little things that I have missed out on as a second time mother. How different my life would be if I had Harry with me. But at the same time it made me realise how my life has changed because I don't have Harry with me. All the interesting, wonderful and kind people that I have met because of my loss, and all the new variety and responsibilites in my life that have come about because I have lost Harry and wouldn't have done otherwise. So I must feel grateful as all these changes and new experiences are little gifts from Harry, my life is very different and while I obviously still miss Harry I am glad that while I don't have him here with me every day, his name is going on to give little gifts in their own little ways.

Additional note:

This week I have lost a very sweet, kind and beautiful friend of mine. Very sadly and very suddenly she passed away, only months after having her first baby. Here I am months on, mourning the loss of my baby, and now a baby is mourning the loss of her mother. The exact flip side to my experience.
I have been thinking so much about that little baby and how her life must have changed. Her mother was a huge part of her life and now she has gone, it must be so confusing.
My thoughts are with her family at the moment and I hope Kate's spirit can rest in peace.

You will be missed xxxxxx look after Harry for me, hun xxx

Saturday, 20 October 2012

Taking Me Back

I think that in life, there are many times that you want to shut away and not think about too often. But sometimes there are things that transport you right back to those moments, sometimes without warning.

Yesterday when I wrote my blog I was transported back to the difficult times in our relationship and felt all those angry feelings again, but unnecessarily because those times were in the past and have been discussed, dealt with and we have moved on. On reflection, I probably shouldn't have gone into as much detail as I did, as dragging it all up again doesn't really help anyone and doesn't make Harry's Dad feel great either. So forgive me, I should have engaged my brain before letting my fingers type out my very personal tales... It is funny how when I was writing it, I felt like I was back in that time all over again.

The same thing happened this week when I heard the very sad news that a friend of a friend gave birth to her little boy, and sadly he was born asleep. How awful to know that someone else is now experiencing that sharp, horrible pain that I did on that very sad day. I felt like I should get in touch with this mother and wrote her a letter as I was writing it I was remembering the feelings and emotions I felt on those very early days and it was strange to re-experience them again. I was taken back to the hospital room, remembering looking out of the window at the people coming and going in the car park, wondering what on earth has just happened.... I remember a nurse coming into my room offering cups of tea and asking when I was due or if I knew what I was having and feeling very strange.... not knowing how to respond to that question as I had given birth and it not turned out the way we had all planned. The first of many awkward moments.

I remember having to start making funeral arrangements and wanting the best for our little boy. I remembered sitting at the computer with my mum playing music and trying to decide what was right. Strangely, this evening I was caught off guard when Strictly Come Dancing played one of those songs "Somewhere Over the Rainbow". Immediately, I was transported back to the church. Stood there in the doorway, clutching onto Harry's Dad's arm, as he was carrying Harry in his tiny white casket. As the song played, I was there in the church, slowly walking down the aisle bringing our son into the church where William was christened, but instead we were there to say our goodbyes. Seeing my family in floods of tears and knowing nothing anyone could do would make it better.

When I visited the neonatal unit and were discussing improvements to palliative care on the ward, we talked about taking footprints and handprints. When we talked about this, I was transported back to being in my hospital bed, high on morphine, in this surreal experience of seeing my newborn hooked up to all this equipment and having nurses help my husband and my mum paint Harry's hands and feet to make keepsakes. I was, at that time, clinging on to the 50% chance that Harry would be ok and couldn't understand why we were doing this as Harry was going to be fine and pull through. The nurses also gave us a beautiful blue knitted bag that they put his name tags and a tiny piece of his hair in. These things I have kept in a special box, of my tiny treasures from Harry's short time. I have also kept the babygro he was dressed in when we held him for the one and only time and the smell on this piece of clothing takes me back to seeing him so peaceful in the funeral parlour.

All these times are so painful so it is no wonder my brain has shut these memories away, but I try to smile through the tears as while it hurts, they are my few precious memories of my little boy and are things I want to hold onto forever.

Friday, 19 October 2012

"You need to work on your marriage"...

When I went into hospital to be induced after my waters breaking days before, Harry's Dad was very keen for me to give birth quickly as it was the beginning of the Euro football tournament. Obviously I couldn't care less, I was just so excited that today was the day I would be meeting my baby, and as I knew how long it took to have William (I was in hospital for 3 days before he arrived!) I wasn't holding out any hope that Harry's Dad would be watching the opening game holding his baby!

Harry's Dad and I have a bit of a funny relationship. We have known each other for many years through various friends as he went to college with a bunch of people I house-shared with when I was a teenager. We knew of each other but didn't really KNOW each other, and were friends on FaceBook etc. I was living in London and just coming out of a long term relationship when I started to chat with Harry's Dad on FaceBook chat now and again as his status updates were always really amusing. Anyway, I was planning a visit to Devon and decided to meet up and we were texting about that for a while. Then he announced he had some annual leave to use up from work and that he would come and visit me in London for the evening. We met up, had some dinner and drinks and had a really great night together and spent the next day wondering around Greenwich. I always felt very comfortable around him and we always felt like we could be completely honest with each other.

Everything happened very fast, suddenly I was leaving London to move back home to Devon, we were moving in together, getting a puppy and then before we knew it we were engaged! He asked me to marry him at a lovely picnic on a sunny day on Dartmoor. We had planned a fabulous destination wedding in the Dominican Republic and in the very same week that it was booked and paid for, I got a positive pregnancy test and discovered our little William was on his way. Obviously, it was a shock, especially as I had been informed by my consultant that I "would never conceive naturally".

In the coming months, we moved to a bigger house and Harry's Dad began working away. I had to quit my job as I was unbelievably sick with the pregnancy and as I was temping it became impossible for me to keep my job open as I just couldn't ever make it in to the office. Things became hard. The honeymoon period had well and truly ended. Harry's Dad was either working away, or out playing football when he was home. I was home alone, unable to drive and with no money, waiting for the arrival of our first baby. I became a bit of a hermit. I lost all my self esteem and confidence, gained a tonne of weight and stayed indoors most of the time. I missed my London lifestyle and my friends, and resented Harry's Dad for going out drinking, and spending lots of time with his friends and leaving me at home by myself. He began misbehaving and things were really as bad as they could get.

After Christmas had passed, I thought that maybe it would be a good idea to get married before the baby came along, so that we were a "proper family" and maybe that would change the behaviour of Harry's Dad. As things were so tight financially, we planned a very small, low key wedding for just close family and a few friends and I was really unsure if Harry's Dad was going to turn up as I honestly felt he didn't want this path. He surprised me, and was there, and we were married. It was a happy day but it wasn't the big day I had always planned, I was an absolute elephant being nearly 8 months pregnant and Harry's Dad was hungover from the night before....!

Anyway, William came along and made the world a very happy place. I felt closer to Harry's Dad as we had the bond of a new little life, who we loved so very much. But, things began to get difficult again when he went back to work, William had horrendous colic, and I was breastfeeding him so there was very little he could do to help with my sleepless nights. I still couldn't drive and felt very housebound, so just before I knew the long weeks away were about to start I decided we would move house again, closer to my nan and to a place where everything was within walking distance. Life became much happier. I had my little boy and I was near to my nan and we were able to do things and see people rather than just the same four walls.

Things between Harry's Dad and I were strained as we rarely spent time together and he was still going out drinking and acting like a teenager. I had learnt to accept how he was, how he would speak to me and make me feel rubbish for not working and not contributing to the household finances, and also that in terms of housework, nothing was shared and I was responsible for everything as well as William.

I was very pleased to pass my driving test and I thought it would be a good idea if I went back to work, to feel as though I was contributing and also to get out of the house and be someone other than William's mummy. After many tearful occassions, I found a fantastic new nursery for William that I felt confident leaving him at. I got a job in a ladies clothes shop in the little town we live in and enjoyed spending two or three days a week being me again. Things between us started to pick up, I felt my confidence returning and our life seemed to be much happier. We decided to try for another baby to give William a sibling and we got caught very quickly. My work were less than impressed that I was pregnant so soon after starting and after some rather strained conversations I decided it was not worth the grief to stay working there.

Anyway, the months seemed to fly by and Harry's Dad and I had our ups and downs. We had a wonderful first family holiday to Spain and things were really great while we were away. Then we came back, things returned to normal and we were arguing again. Mothers Day was a disaster. It had not been planned on the part of Harry's Dad and he had spent the little bit of money we had on a stag do he had planned (for the weekend before I was due to give birth). I was given a lovely card that William had made me at nursery but there was no thoughtful card or gift from my husband, and off he went, and took the car to play football, leaving me and William at home on our own. Luckily I managed to spend the day with my mum as she knew how upset I was and it wasn't so bad after all.

As we got closer to the due date, I started to have pregnancy problems. I was in a lot of pain or very uncomfortable most of the time, I was bleeding and losing fluid on a regular basis and had to make several visits to the labour ward for checks. I always wanted to make sure that the baby was ok but I think Harry's Dad felt like I was putting it on, most of the time.

I will never forget my birthday. I was in so much discomfort, I was crying. I had a lovely day with my good friend who visited from London and my family came over for cake and cards. No present from Harry's Dad, but the promise of a meal at the restaurant where we had our wedding reception. Sadly things were too painful for me to go out for a meal so it was cancelled and then the next day my waters broke.

I had always felt like our relationship was held together for William and if it hadn't have been for him, then I am not sure that our relationship would have made it this long.

Anyway, you know the story of Harry's birth and for the first time in a really long time, I saw some emotion on Harry's Dad's face. I felt so sad that not only was I enduring this hideous experience but he was too. I wanted to protect him. The day we spent with Harry bought us so close and we were able to speak openly and cry together and hold each other. He helped me with my wheelchair that I needed due to my c-section and was very kind and very caring. A side that I had not seen in him for so long.

When we were staying at my parents house and planning Harry's funeral, I felt closer than ever. Like a real team. Things between us were great.

Over the coming weeks life got back into it's old routine of him leaving for work early and me spending the days with William. We became distant. We stopped talking. The arguments started again. Trying to conceive again put us under more strain. My patience with him was wearing thin. I was getting agitated by his laziness and his moods.

It wasn't until one of my counsellors raised the question of how our relationship was going that I said that he was annoying me a lot, and he had said to me "nothing I do is ever good enough". My counsellor said "you need to work on your marriage" I was shocked by her honesty. "Such a high percentage of couples split after the loss of a baby. You don't want to be in that percentage do you?" and I really, truly didn't. And I felt like I wanted to fight for our marriage and not let it go to the rocks. Harry's Dad was working night shifts and I went upstairs and hugged him and said that I don't want to get divorced so we have a lot of work to do!

I have to remember that whilst I can talk about what happened, he doesn't want to or doesn't feel he can. But he still feels the way I do. He has still lost his son, that he loved, as much as I did. The thing that bought us closer will also drive us apart if we let it. So making time to talk and to spend quality time together is so important.

Things are definitely getting better now we are both making a conscious effort to be more thoughtful, and caring, and trying to share responsibilities. To act as a team/united front on decisions or difficult scenarios. And to try to remember what it was that bought us together in the first place.

Because there was a time when I felt like he really was the best thing ever... and deep down, I still do.

Love you Hammy xx

I would like to add a note at the end of this blog as it seems to be causing some controversy.
This is an account from MY perspective. This blog is written as an account from my side of the story.

If it seems as though this is a personal attack on Harry's Dad, then it is not. It is how my marriage has been, for me. So if that is upsetting for you, then perhaps you should try being me. The whole point of this blog is to highlight the "grief journey" and one of the points on this journey is that you need to work at your relationships. And as ours was not perfect to begin with, I felt it important to highlight that fact.

I will add, however, that as ever things are never one sided. I will admit that along the way I have been snappy and had to become a bit of a nag or slightly controlling, but I can hold my hands up and say that I am prepared to address that. As I wrote above, we are working TOGETHER to get things back on track and we BOTH have work to do to make our marriage work.

And just to confirm, I love my husband. He has his moments, but I have written above that I want to work at this and not to let it go. If I didn't, things would be very different right now.

Tuesday, 16 October 2012


So yesterday was International Baby Loss Awareness & Remembrance Day It was a funny day for me.

I spent a lot of the day thinking about Harry, but also about the babies of the mothers who have also lost, that I have come to meet since losing Harry. I was thinking about their tiny lives, some that had barely lived outside of their mother's wombs and some that were born asleep. I was thinking about how sad it is that they didn't get to experience some of life's joys and precious moments, how they will never feel the love of their families and how they have missed out on such a lot. This is something I am currently struggling with on my "grief journey". As I mentioned in my previous entry, I have accepted "my loss" - what I am finding very hard to accept is Harry's loss, and I think that is something I will struggle with for quite some time, as it is something very deep.

 I have always believed that everything happens for a reason and I have questioned why on earth this has happened to me? What kind of lesson am I being taught by losing my son? And what kind of lesson did Harry have to learn from this tragedy? I spoke about this, today, with my counsellor. She put this into a wonderful perspective for me, that I wanted to share with you. She said "what if during Harry's time with you in your womb, he learnt everything he needed to, as he was already pretty perfect?" I like that. I like to think that Harry experienced what he needed to from us while he was still growing and that he can now watch from afar, until he is ready to return in whatever way he will.

 I was thinking yesterday about Harry and about his short time with us and remembering those precious few hours that we spent together, and was thinking about all the other mother's that go through "baby loss" as I met with my consultant obstetrician, I asked him how many babies are lost each year, and to give me some kind of perspective he said he was one of eight consultants at that hospital, and he sees probably one a week (we are talking about pregnancy loss and neonatal deaths here). Wow. That is 52 a year just seeing my consultant, that's not counting the other seven consultants, or any of the other mothers losing their babies that are not under consultant care. And there was me thinking it was only me who knew what baby loss felt like. How wrong I was. So when I lit my candles last night, I lit a big candle for my darling boy, and twenty little candles in rememberance of all those babies - and that is an awful lot of angel babies, and grieving families. It makes me a bit sad that baby loss is such a taboo subject, and I feel like there are probably a lot of ignorant people who will close their eyes to my blog and to my FaceBook posts about it, but I hope that in some way, by my discussing Harry and my loss, that it might become more acceptable to discuss openly, as one would discuss the loss of say a grandparent or parent.

 It isn't just on days like yesterday, when we set aside days of rememberance, that I am reminded of my loss. I was recently reminded when I least expected to, whilst combing my hair. How cruel nature is... I found clumps and clumps of my hair falling out. This, apparently, is hormonal and happens in the months after giving birth as your hormones adjust to no longer carrying a baby. This happened when I had William, and I found bald patches! Lovely. I have actually got a lot of new hair growing around my hairline and seeing the hair falling out was another reminder that I had given birth, but had no baby here to make these dreadful circumstances bearable. Obviously, I have my scar to remind me of this loss too and sometimes get a rather nasty sharp pain in it, just as another cruel dig, and also many, many stretch marks across my stomach. How nice.

 I also receive lots of emails from companies telling me what Harry should be doing at this time in his life. What a wonderful reminder when I check my inbox! "What your 15 week old should be doing!" .... no, he isn't doing those things, thank you - I was constantly emailling these companies to unsubscribe to these kind reminders but sadly my requests fall on deaf ears so I have learnt to turn a blind eye to these and just select the delete option.

 I had my six monthly check up with the dentist this week, and as I am still under a maternity certificate (up to 12 months after giving birth you receive free dental care) I was signing the forms and the lady asked me to complete my baby's date of birth. Ugh, a blow to the stomach. I filled it in, holding back the tears that once again I had been caught off guard.

 I have just got home from a meeting at the hospital regarding Harry's Trust where I met with the senior matron on the neonatal ward to discuss how the money the Trust has raised will be spent, and returning to the ward was a very strange one. The last time I was there was when I was saying goodbye to the little man. Pressing the security buzzer to be granted access was a weird feeling of dread, nausea and intrigue. Half of me kind of expected to walk down the corridor to see Harry there on the unit, hooked up to all the monitors. "Don't be so ridiculous" I had to keep telling myself. "You have said goodbye, and you have buried him, he is not here on the unit". But I actually think that he was... For the very first time since losing Harry, today I felt his presence. Like he was with me. And now, when I think about him, I feel like he is giving me a hug around my shoulders. Strange, but very lovely.

 Thank you for finding me Harry, I feel much better knowing your spirit is with me, at last. xxx

Monday, 8 October 2012


Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.
Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

Taken from the 5 Stages of Grief (Kubler-Ross)

So this is where I am in my "journey" right now. I hate what has happened and it still makes me very sad, but I have "accepted" this as a reality now, and that it is something that will never change.

I have accepted that in the past four months since losing Harry I have experienced all the stages of grief, at many levels, but I have now accepted that my Harry has gone. And that what I need to do now, and try to make my life better and the lives of my family, and also for Harry to not have died in vain, and to have a great deal of good come out of his very short life.

As most of you know, Harry's Trust has been my lifeline. Working on the many events we have held or have coming up, has kept my mind busy and focussed and all the while raising lots of money to help other families in our situation. I have now set up a group, that I am liaising with the hospital about, to support local mothers who lose their babies. I found it very hard to discover that 5 - 10 babies die each year in Exeter's neonatal ward, and found myself asking how on earth I came to be part of that very small number. Anyway, I want to be there to help other mother's on the ward at this crucial time, but after the Saying Goodbye service, I also want to support those suffering stillbirths and miscarriages, as, when all is said and done, we have all lost a child, that was so wanted and so loved. No matter what stage in our journey, we have all felt that sadness. I have enrolled myself on a counselling course so that I might be able to support others encountering a sad stage in their life, and also a reiki course to allow me to "heal" those people who need healing.

So, yes, my life has changed dramatically. I have changed. I think I am more confident, more able to talk about things I wouldn't have usually wanted to discuss openly, I am stronger and I feel more focussed. All that being said, I have to remember that not everyone else is at the same stage in their journey in their loss of Harry. For example, my Mum was shocked when I told her I thought I had now accepted what had happened, she felt a long way off. She always tells me how I have changed since losing Harry and that she believes I can now achieve anything I set my mind to. I hope that she can now see that she too can do whatever she choses, and can feel that Harry has given her that inner strength and that she should believe in herself a bit more. Harry's Dad also said he doesn't feel close to accepting what has happened, as he feels there are still a lot of unanwered questions. Whilst I agree, a lot remains "open", while we await the report from the hospital investigation, I don't think that should prevent your own personal journey. I will feel a variety of emotions when I read that report, however the report is not going to ever change what happened to our little boy, and probably isn't going to change much for our lives - but hopefully will change a lot for the lives of other people dealing with that hospital, as they will take a lot of learning points from our case.

I still feel the sadness though, and as today marks four months on from the day that Harry was bought into the world for his short stay with us, it has been another hard day. It has been a day of reflecting on the past four months, and reliving that fateful day. But now I can accept what happened - I am unable to change what happened to us, or to Harry, and while that saddens me, it is the reality and of course I miss him terribly, but now we have to look to the future, and try and improve experiences for parents going forward and focus on making our lives stronger and happier.

Tuesday, 2 October 2012

I'm not going to steal your baby!!

Back in March, where I live, I was overjoyed to have a really miserable late-middle aged American couple move out of our row of four townhouses, I was even more excited to find a couple around our age moving in who were also expecting!

I spoke to the lady and she told me that she was due in May and I told her I was due on 1st July. We were both excited to be new mummys together and we would speak most days about how we were getting on and how uncomfortable we were both getting.
May came and when I didn't see her I would check to see if her husband's work van was around or if her car had been away from their drive for any length of time, wondering if they had gone to have their baby yet.

When my waters broke on 6th June and I was then booking my induction, I was amazed that I might be having our baby before they had theirs.
In actual fact, we both had our babies that weekend, she had a little girl and I had my Harry. Obviously, my baby was not to come home with us, but their baby was completely healthy and happy, and they were able to bring their baby home straight away.

Since coming home, I have spoken very briefly to her husband to ask how they are getting on, and he diverted the conversation towards William and talked about his watering can. I tried to make conversation with her, but she, like her husband, diverted the conversation towards William and made comments about his "beautiful hair". But several times, I would come home in the car and park up, only to see her stop her conversation with a neighbour, run inside the house and close the door.

I was worried for a while that perhaps they didn't know we had lost our baby, as neither one of them had raised the issue or said they were sorry for our loss or ask how we were doing... But they must know as they haven't seen me with a pram or carrying a newborn, but after speaking with a few neighbours, they do know... We have decided they feel awkward for the situation.
I want to fix this, as it is incredibly awkward for me too. I don't want for anyone to feel weird or odd, after all, it didn't happen to them.

I haven't yet seen their baby, but there have been several times that I have been out in the garden and heard their baby crying and it felt like I had been stabbed in the chest. I can bear it now, and I know from speaking to a neighbour that their baby has colic and reflux, like William did, so I understand how much hard work that can be.

Today, I was in the kitchen, folding some laundry by my kitchen window and looked out to see this lady pushing her pram up the path outside my window. We made eye contact, I smiled and waved... She walked on.... What do I do?
I spoke to Harry's Dad about this. He said "perhaps they feel strange, you know, they probably watched Eastenders and worry that you might "do a Ronnie" and want to steal their baby!"

Are they mental? Is that really what people think? I don't have my baby (that I gave birth to, and grew in my womb for 9 months) so I am going to steal yours (that I did not give birth to or have any hormonal attachment or similarity to).... Really? No. That is most certainly not the case.

Yes, I find it hard seeing new babies, and yes I am not in a place where I am going to be ready to hold anyone's new born, but that is not because I think I might want to steal their baby! Haha. Good Lord... I think I will have to be the "bigger person" and try and approach the situation, but have no idea how, or what to do if she shuts the door the second she sees me... Awkward!