Posted in 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.

Posted in baby loss, Uncategorized

Jason <3

Right, now, here goes. This post is by far the hardest one I will ever write, yet it is the one I am most sure about.

I felt like Jason’s story needed to be shared with the world. Whether anyone ever reads it or not, it is just nice to feel like someone, somewhere might feel something when they hear of him.

Jason was born on the 29th March 2015 at 35 weeks and 3 days. It was a traumatic birth and one that I was not expecting, especially as it was my first pregnancy and everything had gone so well previously. We had no inclination that on that Sunday morning we would have to go through what we did to bring him in to this world. I had been ill on the previous Friday and had the day off work, which I assumed was just a stomach bug as it only lasted 24 hours and I was pretty much better the next day. Throughout the Saturday night and early Sunday morning I awoke regularly every hour with a few niggling pains which I again put down to constipation however by 6:45am Sunday morning these pains got worse and my husband decided we should get checked out. He rang the hospital but whilst dialling the number I started to give birth (very quickly). It seems that the pains were in fact contractions but nothing as painful as I’d imagined so I didn’t think it would be with 5 weeks left to go in our pregnancy. This meant Jason was to be born at home, my waters did not break, there was no show, nothing. Zilch. Nada. The first sign that I was in labour was seeing my boys legs hanging. This is where the story becomes traumatic. My husband (who has a major blood phobia) had to try and deliver our baby whilst we waited for the ambulance to arrive. It took a long time for me to deliver Jason’s head as he was breech (unknown to us that he had turned before his birth). Jason was born at 7:36am and quickly rushed to our local hospital while I followed a few minutes later in another ambulance.
While we waited I was told there would be a very small chance that my baby would survive but I didn’t/couldn’t process this, I just gave birth and I didn’t even know if I had a girl or a boy! My husband was amazing throughout everything, supporting me in ways I never imagined he could.

Jason lived for 37 minutes before the doctors decided there was nothing else they could do for him. He was a tiny baby weighing in at just 3lbs 6ozs, which didn’t seem unusual as I was only 3lbs 13ozs born so I never believed he would be a big baby. There was no explanation as to what happened other than the fact that he was starved of oxygen and therefore his little heart couldn’t get its beats back up. I was lucky to spend the entire day with him, I cuddled him, looked over every speck of him, gave him kisses, spoke to him. Did all the things I always wanted to. My family got to meet him, they were able to spend time with him and we all felt strong together. I never quite grasped that my baby was no longer alive, it felt so weird to hug a baby that should be crying yet lay lifeless in my arms.

I felt useless, no longer able to protect my brother, my husband, my son. Unable to be strong, I wanted to just hear him cry, hours later I still hoped they were all wrong and he was just asleep. I wriggled him, cried on him, dared him to move just slightly. To make the nightmare just that, a nightmare, but no, this was it. My life had truly ended that day. The day I said hello and goodbye to my son. I never saw him again, 29th March 2015 was the last day I saw him, got to hold him. But I never stopped loving him from the moment we found out about him to this very day, I love him unconditionally with my whole heart, begging that he was here with us now.

Jason’s story does not end there, I made sure his memory has lived on in the past 15 months and I’m sure I will tell you all about it soon.

Always my special little boy, Jason. Mummy and Daddy love you always.

A x

Posted in baby loss, Uncategorized

I never wanted to wear these shoes…

Welcome to my first blog post.

I thought it was only fair to tell you a bit about myself, the writer, before I indulge you deep in to the story of how my life got turned upside down.

My name is Amy, I am 25 and live in Shropshire, England. I am a daughter, big sister, wife, friend, cousin, acquaintance and most recently mum. I got married in August 2014 after being with my husband for 8 years and this August we will have been together for 10 amazingly wonderful years, he is my rock and I am lucky to have him by my side. As soon as we got married I found out I was pregnant with our first child. I had only come off the pill 2 months previous and we hadn’t planned on actually trying for a baby until after our wedding, however our first had other plans and was actually already starting to take form on my wedding day. He made sure he was there to see his mummy and daddy tie the knot finally!

I’ve had a good life, my childhood was a happy one, with a loving family around me. I have grown up with a little brother who has Downs Syndrome and it has meant I have become a very strong person. He has shown me that although life can be wonderful it can also be cruel, brutal sometimes and he helped me become the person I am today. I spent my childhood looking after him, protecting him. Making sure that no harm will ever come to him while I am around. My brother, Zack (as i’m sure you’ll read lots about him in upcoming posts) has a wonderful way of thinking, of living his life to the full and making every day count. He doesn’t give up and he is such an inspiration to everyone who knows him. He makes me a very proud big sister.

When I met my husband, my brother had a huge influence on whether I pursued a relationship with this man. You see I was 15 years old and I had a Myspace account. I added a man from my town who was interested in similar music to me and we seemed to have a lot in common, we started talking regularly and quickly became friends. I would talk to him every day without fail. A few months later we decided to meet up with friends and see what would happen. To this day I do NOT condone meeting a stranger online however if I hadn’t have been so stupid myself I might not have ever met my soul mate and became his wife. We were going out for about 6 months (in secret) before I had mentioned him to my family, he was my first boyfriend and I was scared of what they would think of me dating someone older than me but I was ready to face that and deal with whatever consequences that meant. It so happened my family were welcoming and lovely however if Zack had not liked anyone I brought home they wouldn’t be around too long! Him and Zack hit it off straight away and I soon realised I was the third-wheel in our relationship. Even 10 years later, my husband and my brother have a fantastic relationship and again, I know I am lucky to find a man who would take on a brother with Down Syndrome as well as mine has ❤

3 weeks after our wedding I found out we were expecting a baby. It was completely a shock and I remember hubby having to swig some whiskey straight from the bottle as it was so soon. Our wedding day quickly became a haze while we prepared for our little player 3. On 29th March 2015, our special boy was born and unfortunately also died that day.

The day, I became a mum. The day I became a bereaved mum.
The happiest and the worst day of my whole life.

A x