Wednesday, 19 September 2012

Leanne T: Aching Arms

Loss. I know a lot about loss.

I'm only 39 years old but when I look back on my life I see more than my fair share of chapters on loss. A counsellor once said to me that it must be so hard re-inventing yourself and learning to adjust to yet another new 'normal'. It is.

On Mother's Day two years ago I was walking in the Spring sunshine through my local cemetery, I was crying for my mother and my baby son. I felt angry, heartbroken and lonely. It was at that moment I finally realised that the universe was trying to tell me something. Quite simply instead of fighting against my grief I should use what I have experienced to help others. I am motherless, childless, divorced and now I battle with unexplained infertility. I think I can confidently say I know a bit about loss. So...

In the Spring sunshine that day I decided to set up my own charity called Aching Arms.

Aching Arms is a baby loss charity. Our aim is to support the mental health needs of bereaved mothers by providing them with a teddy bear as a comforter to hold in times of distress and loneliness.

This ache is not an imagined feeling. It is real and it can be frightening. My baby was diagnosed with a fatal condition at my 21 week anomaly scan. He died soon after and I delivered him by an induced natural labour at 23 weeks. My heart shattered into a million pieces that day. We named our son James, held him, touched him and talked to him. As he was our first baby we marvelled at the perfect little boy our love had created but we would never see him grow, never see him smile or laugh and he would never know us, his mummy and daddy. The devastation is hard to put into words. This was a loss like no other I had faced. Within days of coming home without my baby, my arms ached to hold him. I had crazy dreams of cradling pets and people, I clung to cushions and my partner to satisfy this upsetting urge, I didn't know what to do with my arms. When a friend gave me a beautiful soft throw rug, I found I could finally get to sleep if I cuddled it. It brought a little comfort.

In an effort to get help and support I found an Australian charity called Bears of Hope. They are a big charity but were started by two friends who had, like me lost their much wanted babies. Bears of Hope ask midwives to give out teddy bears to mothers who have lost their baby during pregnancy, labour or soon after. The teddy bear is given as acknowledgement of the loss and is dedicated in memory of another baby who has died. I finally realised I wasn't going crazy and the urge I had to cradle something was normal. I needed a teddy bear to hold.

I tried to find out if there were any charities here in the UK doing a similar thing and when my search found nothing I wondered if I could set it up myself. But, I was still grieving so intensely I wasn't sure it was something I could do on my own. I knew I wanted to make my son's brief life mean something. Some people, including some members of my family wish I would forget about James and move on, but it just isn't that simple. I am a mother, I nurtured my baby for 23 weeks, I loved him and dreamed of a future caring for him, playing with him and teaching him. I never expected to lose him. How do I just stop loving him and pretend his life didn't matter to me? It is not possible.

A year after losing James I felt I was just 'existing'. I was back at work, I was a functioning member of society on the surface, but my arms ached, my heart was shattered, a deep core of sadness ran through my soul, work seemed pointless and many friends just drifted away busy with their own children. Life seemed pointless, until...

Mother's Day 2010. I posted my idea on the ARC online forum. It had become my life line and the charity helped my partner and I survive those darkest of days. Within 2 days of posting my idea about Aching Arms, my inbox had 25 messages from other bereaved mother urging me to do it. I had offers of help and support. It was amazing! I met one mum, who lived locally to me and she said 'let's do it'. She was put in charge of fundraising. Another mum said she would build a website, another is a journalist and would do all the media and help with PR, another started buying teddy bears and posting them to me and another started researching ribbons. We were underway.

Finally, I was living again, not just existing.

Bears of Hope gave me their blessing and in just 2 years Aching Arms is growing stronger every day. If you visit our website you can read more about us. We all do the charity work in our spare time but hope one day to have enough funding to at least work part-time for our charity. We have recently delivered our first training session to midwives, it was really well received and we hope to do more of this work.

I will always be a bereaved mother, I can't change that. I will always miss my son, I can't change that. I will always talk about my son, no one can stop me. Breaking the taboo of baby loss is so important.

The only way to cope with loss is to talk to others who will listen. No words will make it better, but silence makes it worse.

If you, or someone you love, has experienced the loss of a much wanted baby, please make a donation and we will send them an Aching Arms teddy to hold. It will help them feel less alone, and will bring a little comfort to their aching arms.

Peace and comfort,

Aching Arms
Charity no. XT25650

Sunday, 16 September 2012

Clara: My Story

Inspired by the other parents who have shared their children's stories on here, I have finally decided to share the whole stories of Molly and Grace. Here goes...

We found out we were pregnant with Molly in mid-December 2010, 5 months after our wedding. We were delighted but couldn't help worry as we had miscarried at 6 weeks just under 3 months earlier. At a scan on the 6th of January we saw Molly for the first time. A little bean with a flickering heartbeat. We were in love! We were delighted and let our parents in on the news early on.

Things were going well. I was being sick constantly. We started to relax and counted the days to our 12 week scan so that we could announce our happy news.  Valentine's Day arrived and with it my 12 week point. Our scan wasn't until the following week. My mother-in-law came with us and we were amazed to see our little jellybean waving away at us. All was well the sonographer said, things were progressing nicely.

We announced our happy news to friends and family. No-one was more excited than my 5 year old niece. She was so excited about being a big cousin and started having regular conversations with my growing bump. The 'morning' sickness continued morning, noon and night.

At 16 weeks I had a small bleed. A trip to the maternity unit showed I had a cervical erosion. Nothing to worry about at all. We also had the chance to hear Molly's heartbeat through the doppler. One of the most amazing sounds I have ever heard. In the next few weeks, I started feeling movement. Every time I sat down, I had flutters in my tummy.

At 19 weeks, another bleed. Again a trip to the hospital confirmed the erosion was the cause of the bleeding and we had another opportunity to hear the heartbeat. Perfect! We were looking forward to our 20 week scan the following week.

On the 12th April, at just over 20 weeks, we headed to the hospital for our scan. I hadn't felt any flutters for a couple of days but was waiting patiently for the real kicks to start. We were looking forward to seeing how our jellybean was coming on. We were shown into the usual room but this time the sonographer did not turn the screen round. All was quiet and I knew something was wrong. She took my hand and said 'I'm sorry but there is no heartbeat'. I will never forget that moment. She went to get someone to come and confirm that our baby had died.

We were shown to a tiny room and told a doctor would come and speak to us. We were in shock. The next couple of days are a blur. I was given tablets to take and told to come back in 2 days to be induced.

We arrived back at the hospital a couple of days later and were given a side room in the labour ward. All around us we could hear the cries of healthy newborns. At 10am, I was given the first pessary to induce labour and the contractions started soon after. That whole day is a blur to me.

Molly was born at 21 weeks on 14th April 2011 after a 12 hour labour. I didn't look straight away. The midwife took her away and brought her back to us all clean and wrapped up. I was scared to hold her, scared to touch her. But she was perfection in miniature and so beautiful. Her hands were perfect, complete with long fingers and tiny fingernails. She would have played the piano, I knew that.

We held her and spoke to her. I was scared to unwrap her and look at her. I was scared to keep her with me. We spent a few hours with her then the midwife took her away. I was in shock. I don't think I would have survived had it not been for my husband. He was there every moment with me, he kept me going. Leaving the hospital the next day, without Molly, was one of the hardest and most horrendous things I have ever done. Walking away that day was the worst part of the whole experience, I don't know how my legs carried me. We buried our beautiful girl 2 weeks later on a warm, sunny morning.

I have regrets...
...that I didn't look at her feet, that I didn't hold her for long enough... I just didn't know what we were allowed to do and I didn't have the presence of mind to ask. I look at her footprints and I wish I had looked at her tiny, perfect feet.

July brought results of the tests carried out on my placenta. Molly had been perfect, my body had let her down. Placental results showed that she had died due to a very rare condition called Massive Perivillous Fibrinoid Deposition (MPFD).  This basically meant that fibroids and clots had formed on the placenta, gradually taking over until it was no longer fit for purpose and unable to support a growing baby. You can read more about it here.

Consultants put in place a plan for future: daily aspirin tablets and daily self-administered heparin injections. It was hoped that this combination would stop clots forming and keep the blood moving through the cord. Time would tell.

We went on to have another early miscarriage at the end of July 2011 and then pregnancy test on New Year's Eve confirmed that we were pregnant for the fourth time and, with a treatment plan in place, we were hoping that finally this pregnancy would give us our take home baby. What a fantastic start to 2012! Our rainbow baby was on its way!

We were booked in with the midwife straight away as we needed a quick referral to our consultant and a early scan before we started on the medication. 6 weeks brought us to our first scan...

With a little bean appearing along with a heartbeat we began the medication. At night, I was taking my aspirin, folic acid and vitamin D. Also I began injecting the clexane. This was a bit strange at first but I got used to it quickly and a vast array of bruises began to decorate my tummy. I was not bothered, I would have injected myself a hundred times a day to keep my baby safe.

8 weeks showed us our little bean was coming on well and things continued to progress including my 24 hour morning sickness. I was losing weight and couldn't keep a thing down. Evenings were particularly bad but I didn't care. It was reassuring.

After a small bleed, we were scanned at 10 weeks for reassurance and our little teddy bear made a spectacular appearance. Possible future gymnast perhaps? They were twirling and turning the whole time.

Things quietened down and we waited patiently for our 12 week scan. It came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.

Things were going well and baby was coming on a treat. We were delighted but still very apprehensive. Molly had also been measuring perfectly at this stage so we knew we had a long way to go. Our next scan was booked in for 15 weeks.

15 weeks arrived (it was a Wednesday). Baby was measuring slightly behind but the sonographer wasn't worried and said it was normal to be out by a few days. The worry was in the back of my mind though. We went round to see the consultant to make sure all was going well with the medication. He offered extra scans for reassurance at a community clinic every Friday which we gratefully accepted. We went 2 days later for the first of those scans and a registrar scanned us on a very old machine. She was concerned about the fluid level but, after looking at our scan photos from the big machine from the Wednesday she said they were the same and not to worry about it if the hospital hadn't mentioned it. So we tried to put it out of our minds.

On the Sunday I had a major bleed so we went down to the hospital. A doppler let us hear a nice strong heartbeat and put my mind at rest a bit. A scan was also arranged for the coming Wednesday when I would be 16 weeks. This was when our world started to crumble all over again.

The scan on Wednesday showed that there was no amniotic fluid and the blood flow through the cord (EDF) was absent. We were devastated and could not believe that it was happening all over again. The doctors advised us that our baby would die within days and that they would scan us weekly until the inevitable happened. We met with our consultant the following day. He thought it was the same thing again and told us that this was the first time the hospital had dealt with anyone with MPFD. In fact, they hadn't heard of it before and the treatment we were on had been their best guess.

17 weeks: Scan showed baby still had strong heartbeat although growth had majorly slowed down. However, some small pockets of fluid had appeared and EDF was present. This gave us a tiny sliver of hope and the doctors doubled the amount of clexane I was taking.

By this time I was in contact with a fellow silent mum in England who had also experienced multiple loss in practically identical circumstances. We realised we had the same condition! This wonderful person had already done so much research and gave us hope that whilst it might be too late for this little one, we still had a future. There were treatments available - we provided our doctors with all the research.

18 weeks: My bump was popping out and growing well, I was still being sick. Scan showed our little star was continuing to fight hard. There had been some growth but the small pockets of amniotic fluid were gone although the EDF was still present.

19 weeks: Little fighter continuing to baffle the doctors and heartbeat still going strong. Growth minimal, EDF still present. Bump growing, baby kicking regularly.

20 weeks: Our little one still not giving up without a fight. EDF still present, no growth. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. We still couldn't believe we were going to lose our rainbow baby and we had such a horrendous sense of déjà vu as it was all happening at the same time of year again.

21 weeks: Heartbeat still there but EDF now absent again. I was advised to stop all the medication.

I woke up a few days later on 2nd May and knew our little one was gone. I had movement the night before but I knew when I woke up. A scan later that morning confirmed our little one had finally lost their battle. I was booked in for induction 2 days later.

4th May 2012, 22 weeks pregnant: After 6 hours of labour, Grace came silently into the world in the same room as her big sister was born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought in her forever sleep. She would have been our little thinker.

I wasn't so scared this time. I held her. I looked at every part of her, including her tiny feet. I didn't want the same regrets as I had the last time. We had little clothes for her and teddies and blankets. We cuddled her for hours.

We kept Grace with us all night and her grandparents came to meet her. A bright, lone star also appeared in the sky outside the window. I think Molly had come for her sister.

The next day, we said our goodbyes. It took us a long time to walk away. Once again, I found this the hardest thing to do. There is nothing worse than walking away and leaving your child behind. It is the most horrendous thing I have ever experienced. I don't know how I did it either time. I don't know how my legs carried me out. I know that each time I did it I left a piece of my heart behind. I'll never get those pieces back.

Tests on the placenta have confirmed that, like Molly, the placenta was again attacked due to the condition MPFD. They are still not 100% certain of what causes the MPFD to happen, possibly an immune response, possibly an as-yet undiagnosed thrombophilia issue. They are not committing to either school of thought. What they have said is that the condition is aggressive and recurrent and they are struggling to find anyone else with as severe a condition. We are a unique oddity.

So... they have agreed to the treatment plan we have researched as long as we go into this with eyes open and accept that we are now sailing in unchartered waters with no guarantees. This treatment will include aspirin, high dose folic acid, heparin, steroids and Intralipids.

So we move forward with a quiet optimism and a realistic pessimism.

Update Jan 2013: Despite the new treatment plan, we went on to lose another baby at 11 weeks in December 2012. You can read more about this in my blog post 'Clara: When loss keeps on happening.'