We had our post-mortem results meeting last week. It was a horrendous experience from start to finish. Even going back to the maternity hospital was such a trauma trigger. We were directed to the Day Obstetric Unit where I had been for my 20 week scan and indeed there were several couples waiting eagerly to see their little babas. The receptionist who had clearly not been informed that we were coming loudly asked what our appointment was for, forcing us to reply in front of everyone that we were there for postmortem results. I kept my head down but could only imagine the look of horror on the faces of the parents waiting for their scans. The receptionist then went on to ask me where my notes were! How I wish I was there with my notes, with a growing baby inside me. We were then put in a side room and promptly forgotten about for 30 agonising minutes! It was only when I sent my husband out to find out what was going on that they actually let the consultant know we were there. No thought at all seemed to have been given to the fact that being there was excruciating for us and every minute waiting felt like an hour.
The consultant was less than personable but by that stage we just wanted the results. Contrary to what I was expecting, we did get an answer. Our baby Isobel was absolutely perfect. All her little organs perfectly formed and well grown. The placenta however had grown with ‘fibrinoid material’ throughout. Apparently a certain amount of this material is normal but for some reason my placenta had too much – giving a diagnosis of Massive Perivillous Fibrin Deposition (MPFD). This is a rare condition, affecting only around 0.005% of pregnancies. Usually it makes itself known by causing growth restriction throughout pregnancy however for an unknown reason with Isobel this did not happen and it had an acute effect. When it began to have an effect it starved Isobel of oxygen and they estimated that she was dead within six hours. They told us that MPFD can’t be seen on a scan and aside from monitoring growth, there is no way to test for it. It also has a significant recurrence rate of 15-40% depending on the study.
How do you process information like this? In some ways I’m glad to know that Isobel herself was perfectly developed and had everything that a baby needs in order to be healthy. However to know that if she had been born even the day before she died, she would have been perfectly fine is just so painful to think about. I feel that I created a perfect baby but then let her down, killed her in fact, at the last minute. We also know that she died at some point in the 14 hours before I went to the hospital with concern over the lack of movement. I keep running over that morning in my mind thinking how my baby was being starved of oxygen, dying, as I was happily pottering around the house, so impatient to meet my darling girl. How could I not have known she was in trouble? What sort of mother am I?
My grief for Isobel has intensified so much since finding the results of the post-mortem. I’m not sure if I had improved a little and it’s been a set back to how I was before, or if it’s worse than its ever been -but it feels worse. I’ve cried and cried until I can’t breathe and my head aches. I’ve lost all my motivation and for the first time since Isobel died, I’ve cancelled plans with people due to not feeling like going anywhere (usually I just make myself go regardless of how I’m feeling) and I haven’t been out walking or running since the appointment. Today I’ve cancelled plans with my friend and I’m still in my pjs on the sofa at 3pm. I want my perfect little girl here with me, what is the point of anything without her?
I’m also so scared for the future. The idea of this happening again if I ever even manage to get pregnant again is too much to contemplate. I could not survive this loss a second time. It seems so unfair to even have a full term stillbirth, never mind to have such an unusual condition that they don’t know the cause of, how to test for it during pregnancy, or how to treat it! It’s like I’ve won the anti-lottery! The consultant at the hospital was so unhelpful, she just said she’d never come across the condition before and I would be treated with aspirin in my next pregnancy. Even a rudimentary Google search reveals that aspirin is not a successful treatment for this condition. Due to the rarity there is very little information available but there is one case study online documenting successful treatment with an anticholesterol drug. However there are more failure than success stories so it all feels very hopeless at the minute. My little flicker of hope that one day Isobel will have a little sibling and that Simon and I will have a baby to care for has been extinguished!
I know at some point I will move from wallowing mode to action mode. In action mode I will research and become the worlds leading expert on MPFD! I will find a consultant who knows something about something and who will look after me should I ever become pregnant again. In action mode I will have hope that something I can do will actually make a difference. For now though it’s pure wallowing: it’s crying and pjs and ice cream and day time TV and above all missing my baby girl with every part of my mind, body, and soul.