11 March 2015, you would think my baby brother’s 18 Birthday would be one of pure celebration, and it would of been had I not expected to get my autopsy results back on the same day. I had wanted to call him. My appointment wasn’t until 3pm, but I felt guilty, I didn’t want to bring down his day. So I didn’t call, I was selfish. I didn’t want any of my family to be upset on my brother’s special day.
Tap, tap, tap, tap my foot and the vinyl floor of KEMH (King Edward Memorial Hospital) seemed to have a rare connection that I couldn’t keep them apart. Maybe it was something to concentrate on maybe it was boredom, or just maybe it was pass the time away. Somehow I think it was a mixture of the three.
I had been squeezing Tim’s hand since we had been picked up by his Mum’s; the nerves had kicked in before we left the house. We were on one of our final ‘adventures’ to finding out what had gone wrong with our little boy, and why he had died before he had been birthed. I don’t know if you have ever been in this predicament or how your hospital handles it, but at KEMH you get to the main entrance head down a hallway labelled ‘West Wing’, it’s not a long hallway but it’s got pretty hand craft pictures on the walls, most likely created by the young children staying at the KEMH. When you reach the end of the hallway, you get a receptionist or as the clinic it’s self is called Perinatal Loss Services; this lady will point out a seating area specifically for parents with similar circumstances.
In this special waiting room was two other couples, and they looked as nervous as us. One of the couples reminded me why we needed to be strong for one another, as they looked so disconnected from each other that it reminds you that not every couple can deal with the pressure of losing a child.
We waited, and then waited some more and then finally we got shown to a room.
We first went through my results; I was a perfectly, unremarkably fine. Nothing showed up in any of my extensive blood test. I had normal glycated haemoglobin, normal thyroid function, negative TORCH screen and all bloods associated with pre-eclamptic changes were normal. My thrombophilia screen was negative and my acquired thrombophilia screen showed a decreased protein S which is most likely consistent with pregnancy and interesting an elevated protein C. Nothing out of the ordinary.
We then went through the events of the day when Ryker was born, the doctor asked me to explain in my own way what had happened. I don’t think I need to repeat what happened. Then we got to the part we had come for. What was wrong with my boy?
The post mortem examination of Ryker showed a slightly small baby, but what was more noticeable was an extremely small placenta at only 310gm and significant placenta infarction with areas of avascular villi and thrombosis in the chronic vessels, in English that all means that Ryker had blood clots to 5% of his placenta and that a ‘normal’ placenta size is anywhere between 500-600gm, and that his placenta had started to die. There was no evidence of infection. The small placenta was sadly unable to support Ryker through labour.
The specialist doctor then explained that the most likely cause of all this was that I had MTHFR gene (a blood clotting gene) which can be associated with hyperhomocysteinemia and thrombophilia. I was asked to go and get gene testing done the next day. And if my results come back positive for MTHFR, then my partner Tim will also be getting check as the combination of an abnormality on both sides can lead to fetal thrombophilia which can explain the thrombosis in the fetal vessels seen in my placenta.
After all this explaining and question asking of what could of caused it all and could it be detected earlier, and if so what would that mean. I got a shocking answer. My son was never really going to make it, and if he had he would have been severely brain damaged with a likely chance of Cerebral Palsy. Because through all that mumbo jumbo above I forgot to explain one main thing, Ryker was never getting enough oxygen to his brain and that my placenta didn’t fully attach to me. In some ways Ryker passing is a blessing in disguise, that doesn’t mean I don’t love him and that I wouldn’t have loved him had he survived. Because I would have put my life on hold to care for that little boy, what I mean by blessing is that he isn’t suffering now. He feels no pain. That is my one silver lining in my whole journey, is that my son is not suffering from something that nobody could have stopped.
The conversation then turned towards a different topic; the next pregnancy, whether or not Tim and I would try again, and how soon or how far away. I won’t tell you the answers to any of those questions, because quite frankly it’s no ones business, yet.
However I would like to point out that my next pregnancy I have been advised that I should wait 6 months after my c-section to try again (TTC) so around July if want too, my pregnancy will also be High Risk and the amount of drugs I will be taking through the pregnancy is astonishing, here are just some; High dose of Folate at 5mg a day, Pyridoxine 100mg a day, Clexane injections (blood thinners), baby Aspirin and the usual pregnancy vitamins, as well if needed I will have to go back onto Labetalol (High Blood Pressure Tablets, I had to take them through Ryker’s pregnancy) at 100mg. And then there are the extra ultrasounds (after the first trimester they will be every 2 weeks) and also throughout the pregnancy they will take samples of the cord blood which is basically a nice big needle in the stomach. I have also been advised it would be best to schedule a c-section between 37 and 38 weeks.
So all in all, Rykers autopsy results came back with something. That is more than some parent’s get. We were prepared for no answers and I think that is what helped the most. We where told that most stillbirths go unexplained. I am one of the very few lucky ones that have a reason that their child is not with them, I am thankful for that at least, I have some closure while some have nothing. My heart breaks for those who are told there was no reason or that they had a perfectly normal baby, I don’t know how I would cope knowing that my baby was perfect in every way except that he isn’t here with us.