Molly and Grace’s Stories.
Massive Perivillous Fibrinoid Deposition (MPFD).
We found out we were pregnant with Molly in mid-December 2010. We were delighted but couldn’t help worry as we had miscarried just 2 months earlier. A scan at 6 weeks showed a little bean, with a flickering heartbeat. We were in love! I spent the next few weeks mostly being sick.
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.
We also had the chance to hear baby’s heartbeat through the doppler. In the next few weeks, I started feeling movement. Just before 20 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.
At 21 weeks, we headed to the hospital for our routine scan. 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. 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. I was given medication 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 after 11 hours of 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.
We held her and spoke to her. I was scared to unwrap her and look at her properly. 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. 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.
We went on to have another early miscarriage at the end of July 2011 and then a 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 heparin. 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. Our next scan was booked in for 15 weeks. At this point, the baby was measuring slightly behind but the sonographer wasn’t worried and said it was normal to be out by a couple of days. We went round to see the consultant to make sure all was
going well with the medication. He offered extra scans for reassurance and we went 2 days later for the first of those scans. 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 hospital she said they were the same and
not to worry about it if the hospital hadn’t mentioned it.
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. It looked like the condition which had taken Molly from us had returned with a vengeance.
By 18 weeks, my bump was popping out and growing well, I was still being sick. The scan showed
our little star was continuing to fight hard. At 20 weeks our little one was still fighting. EDF was present but growth was minimal. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. 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 died. 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 Molly had been born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought. 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 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.
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 alloimmune 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 was aggressive and recurrent and they were struggling to find anyone else with as severe a condition. We were a unique oddity.
So… they agreed to the treatment plan we had researched that had been successful for people with a similar condition 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 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. 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. Even if the pregnancy had continued beyond 11 weeks, the placenta would never have lasted. 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. Surrogacy was such a positive experience for us.
My sister was amazing – she would phone us to come up when baby was moving around so that we could feel her moving. We did worry about how she would feel when baby arrived but the fact that the baby was biologically ours and not hers made that easier for her. We there in theatre when our little one arrived by c-section at 37 weeks. We all cried. My sister felt it was such a different experience to having her own. She said she loved her immediately but didn’t feel the rush of intense love she had experienced when her own daughter had been born. I think this was a relief for us both as we had both been worrying about it. Cara knows she grew in her auntie’s tummy because mine didn’t work. It’s just the way it is. What a fab auntie she has!
So MPFD 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. I also volunteer with SANDS Lothians – a fantastic charity who were a light for us during very dark times.
Despite everything, we are blessed. Every day our little girl brings us such joy – we are so lucky to have her.
You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested: