baby loss · down syndrome · Uncategorized

Post Mortem

The following months after Jason’s death was excruciating, I didn’t want to wake up let alone face the world and so many people wanted to offer their sympathies. I had to stay strong for my husband and my family, I was never forced to be the stronger person, I wanted to be. I’ve always wanted to protect and care for those I love and this way I could maintain that.

We planned Jason’s funeral, deciding to have him cremated with a very small service only asking our parents and grandparents to come if they wished. I’m not someone who is openly emotional and knew with others there I would have remained stone-faced and unable to grieve for my son properly. With that said, I also decided I did not want my brother there as again, I would not have been able to grieve. Selfish? Probably but it was MY son’s funeral and I wanted to show him how loved he was. I remember the day as clear as anything, yet I can not remember the date, nor do I particularly want to.

I felt like the support we received since our loss was awful. I heard  from no services and when I went for my 6 week check up I was told that I didn’t need it seeing as my baby was not alive. I gave birth, why is my right less than anyone with a living child? I was shocked and appalled but carried on surviving (not living) until the date for our post mortem results came through the post. We chose to have a post mortem done as we knew it would help find closure in some way and hopefully give us the answers we desperately needed. This was not the case.

During Jason’s post mortem we found that the main reason for his death was the birth itself. To this day this haunts me knowing I should have been able to save him and bring him in to the world. His breech delivery along with a home birth and lack of oxygen meant my beautiful boy died. We also found out that Jason had a hole in the heart which prevented the doctors from getting his heartbeat strong enough to survive without support and he had tissue on his brain that shouldn’t have been there. To look at him you’d have never guessed such a tiny, gorgeous baby would have so many health problems. We don’t know the damage the tissue on the brain would have caused him and I want to believe that him dying prevented him from being unable to live his life to the full like he deserved. Would I have wished for him to carry on living to ease my desire and my selfishness if his health would have caused him so much pain? Never. I would give ANYTHING to bring him back but not like that, seeing him suffer would inevitably kill me.

We also found out that Jason had Down Syndrome, which came as a complete surprise to myself and my husband. I did not see the signs on his face, the eyes, the mouth. Nothing told me that he had Down Syndrome. Now, you see, I have a brother who also has Downs and he is my world, I would never change him and I love the man he has become so Jason having DS meant nothing to us. We had the quad-test while pregnant which came back as low risk and was unlikely our unborn child would carry the disorder. To show just how special Jason was, his form of Downs Syndrome was extremely rare, and is known to be passed down through genetics unlike regular DS such as Trisomy 21 which is not genetic. Jason had Translocation Down Syndrome meaning one chromosome attached itself to another pair. I was convinced that due to my brother having a type of DS I was obviously the carrier and I’d passed this on to Jason. I never imagined that the gene had come from my husband but we both had to have a blood test to see whether we were carriers. If a parent is a carrier of Translocation DS it means there is a higher chance of passing it on to future children and having trouble getting pregnant. I spent the next few weeks doing lots of research in to ways I could help us in future pregnancies and how this would have affected Jason and our family. It changed nothing, my boy was perfect and nothing the doctors could tell us would change that and still hasn’t to this day. When I look at pictures I don’t see the DS I see him, the double of my husband, his hair, nose. He looked so much like his Daddy that it makes me love his Daddy more than I could ever have imagined.

When the results came back I was positive I already knew the answer, what were the chances of my brother and my son having DS if it wasn’t though genetics? Yet the results were in and neither myself or hubby were carriers of the gene and Jason’s DS was just one of those things, there were no answers or reasons why, it just was. In a way I love that my first born shared something with his uncle that none of us would understand, I like to imagine what they’d have both been like while he grew up, would he have been like Zack or would he have been different? These are questions I ask myself regularly but will never find out the answers. I just hope that he never knew any suffering while he was growing inside me or while he was fighting for his life for those short 37 minutes after he was born.

I want to spread the word and tell people about DS, the different types and how it can affect people, families, those that care for them. There are so many varities of the disorder and while my brother is a huge success story, along with so many others, Jason unfortunately didn’t get to live to find out how his DS would affect him. I will spend the rest of my life correcting peoples ignorance, raising awareness and sharing my love for my son, my first child every moment that I am alive.

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