Molly 14.4.11 & Grace 4.5.12

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 2 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! I spent the next few weeks mostly being sick and then Valentine’s Day arrived and, with it, my 12 week milestone. Our scan wasn’t until the following week and we were amazed to see our little jellybean waving away at us. All was well and the Sonographer said things were progressing nicely.

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 which we were told was nothing to worry about at all. We also had the chance to hear baby’s heartbeat through the Doppler. It was 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, I had 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. We were looking forward to our 20 week scan the following week.

On the 12th of April, at 21 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 was gone. 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 at 9:04pm. 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.

We held her and spoke to her. I was scared to unwrap her and look at her properly. I was scared to keep her with me. We spent a few hours with her then the Midwife took her away. I was in complete shock. I don’t think I would have survived had it not been for my husband. 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 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. Consultants put in place a plan for the 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. At night, I was taking my aspirin, folic acid and vitamin D. Also I began injecting the Clexane. After a small bleed, we were scanned at 10 weeks for reassurance and all was well. The 12 week scan came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.

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 came and 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.

A few days later, I had a major bleed. We went 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.

The 17 week scan showed baby still had a 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. I also began taking steroids to see if it would help halt the damage to the placenta, which was assumed to be the cause rather than loss of waters. It looked like the condition which had taken Molly from us had returned with a vengeance.

By 18 weeks, y bump was popping out and growing well, I was still being sick.  The 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.

At 19 weeks our little fighter continued to baffle the doctors and the heartbeat was still going strong. The growth was minimal and EDF still present but the bump was still growing and the baby kicking regularly.

20 weeks: Our little one still not giving up without a fight. The EDF was still present but 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.

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

I woke up a few days later on the 2nd of May and knew our little one was gone. I had movement the night before but I knew when I woke up that something was wrong.  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 at 3:15pm in the same room where 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.

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.

Tests on the placenta confirmed that, like Molly, the placenta was again attacked due to the condition Massive Perivillous Fibrinoid Deposition. They were still not 100% certain of what causes the MPFD to happen, possibly an immune response, possibly an as-yet undiagnosed Thrombophilia issue. They did not commit to either school of thought. What they did say was 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 agreed to the treatment plan we had researched as long as we went into it with eyes open and accept that we were now sailing in unchartered waters with no guarantees. The treatment would include aspirin, high dose folic acid, heparin, steroids and Intralipids.

I became pregnant for the 5th time in Autumn 2012. All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks on Tuesday showed the heartbeat had stopped. This had been so completely unexpected and I felt completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I had been taking all my myriad of medications, focusing on getting to that point and then taking it from there.

Since finding out we were pregnant again, I had injected myself with heparin over 100 times. I had taken over 200 steroid tablets as well as the daily aspirin tablets. I had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.

Placental tests came back to show that MPFD had returned with a  vengeance despite the extensive treatment plan. We were told that I would highly likely never carry a living child to term and we should start to look into other ways of having a family.

Following our 5th loss, our consultant mentioned surrogacy to us. He felt it would be a good idea for us as our babies were perfectly healthy, it was just my body that was the issue. My sister offered to be our surrogate and kept offering until we decided we would give it a go. We used our own embryos and my sister was the oven! We became parents to a healthy baby girl in Spring 2014 and we feel so blessed. MPFD did not make an appearance at all.

This is a condition I still research and blog about. It is so rare, it is important to me that others find some support. When I initially googled it, all that appeared was a bunch of medical papers that made no sense to me. I want others to be able to find a human face to this and also so have instant access to research and treatment plans which I have collated along with another mum who has the same condition.

In the October after losing Molly, I became aware of the West Lothian Support group, run by a colleague of my mum. I began attending the monthly support meetings and it has been a huge source of support for me. The girls in the group were also a fantastic support through our journey with Grace. I also attend the mother and toddler group now and it is so nice to be in a place where you can be yourself and not worry about all the awkward questions that seem to come up at other groups. Held In Our Hearts has been a lifeline for me and I have made many new friends. I have been very lucky to have this and also to have a supportive family network behind us. You have to take every positive you can, some days these little positives are the only thing that keep me going.

You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested:

http://lossthroughthelookingglass.blogspot.co.uk/2012/08/clara-massive-perivillous-fibrinoid.html

Claire