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.