William six month update
Yay we made it. Yay for William our strong and courageous little man.
Six months and one day ago our little boy William Bradley Martens was born and Bec and I were thrilled to complete our little family with such a delightful little boy. But from the moment he entered this world we knew something was wrong. We were not greeted by a child screaming his head off saying put me back in my nice cosy incubator but one of total silence. Now this silence wasn't scary per se but even his dr was like “he is a bit quiet”.
During the pregnancy Bec had gestational diabetes so the natural assumption was low blood sugars which were confirmed but we expected this.
Williams journey was starting just like most babies by adjusting to this big world we live in, learning to feed and the usual stuff parents expect.
After about 48hrs Bec and I were getting concerned, William was struggling to feed and becoming distressed and while feeding our boy would just go rigid which was the first sign, but it didn’t really click in our minds that this was a seizure. We persisted with feeds as after all, not all kids just pick it up, but it was not improving like we hoped. One thing William has in his corner is his ever vigilant and smart mother.
Bec was noticing things and challenging the drs but the signs were not being seen. Every time something happened no one was around us, we were hidden behind a curtain or the drs and nurses were helping others. This is not a dig at the medical staff just the reality we were in.
Five days in and Bec and I were a little stressed but I did all I could to reassure her that all would be ok. When drs were rounding in the evening Bec happened to be trying to feed him and again it just wasn’t happening, she put him back to bed, hooked him up to his monitors and prepared him to be tube fed and his monitors went a little nuts. Our boy was desatting and in great distress.
Side note: whenever he was fed he was always taken off his monitors which to us is maybe one of the reasons we didn’t pick up things a couple of days earlier.
Our doctor saw what was happening and sprung into action and before we knew it William was being transported by NETS to Westmead NICU.
Who would have thought we would be in NICU and I have never been more scared in my life, even sitting here writing this I cannot help but cry.
One thing very evident was William was struggling, he was hooked up to every machine possible and the dreaded word was said “seizures”. I cannot express how confronting this is, I appreciate perhaps not as confronting as some other conditions but close your eyes and imagine your child having seizures, it’s a horrible image isn’t it.
As you can imagine steps were taken to reduce seizures and test after test was run. Epilepsy was spoken of but confirmation was needed. Other diseases were spoken of too and some were confronting and you cannot help but think “you cannot be serious we cannot live with a child like this”, “why our boy “, but little did we know the worst was yet to come.
Due to the seizures William had some genetic tests done and his markers for epilepsy came back positive and this put us on the radar of the genetics team. They came to visit us and went through their usual assessment but one thing that stood out was the comment which seemed so off the cuff at the time was that his eyes were further apart. To me he looked normal but now I see it and my gut was saying I don’t like this, I don’t like these drs but shit be strong Bec needs me.
One thing about being in NICU is it’s their goal to get you out as soon as possible (which is what we all want), beds cost money and they earn money by getting someone else in quickly. I know that sounds bad and trust me it feels like shit when drs say you are going home and you know your child ready. We were battling with our rostered on dr that something was very wrong and he needed to listen. This dr was not listening, why we don’t know, but we raised our voices and cried on more than one occasion.
Being at the adults NICU we needed to get over to the children’s hospital as soon as we could so more tests can be run but beds were hard to come by.
Back to genetics, the drs asked for a meeting they wanted us to be part of a study and by being part of this study we could get results back in a week or so rather than 4-6 weeks. They were not suggesting anything would be found but we all knew something was yet to be confirmed. Bec and I discussed it and agreed we needed answers and gave the go ahead. Bec, William and I got our blood taken and we waited.
A few days after this test was taken we finally got shipped over to Westmead Children’s NICU aka Grace. The teams went next level and every team you could think of became involved.
I won’t forget this day, it was a Friday and we were exhausted, William wasn’t great but doing ok and we were preparing to head home when genetics team called and asked to meet with us as they had some news.
We were ushered into a room with our drs, the genetics team and the head of the genetics team came to deliver us the news. I won’t forget her face it was one of fear and distress, she was uncomfortable being in the position she was in. She spoke it in simple terms that William had a rare genetic disease. I keep hearing those words and cannot help but think why? just why? it’s just not fair. Our dr was emotional but the next words stung the most. William is 1 of 20 known cases and has a life expectancy of 6 months to two years. What do you mean life expectancy? You mean our boy could die one day. This is fucking bullshit. I cry now like I did that day driving home it’s uncontrolled, it leaves you shaking. How are we going to get through this with this black cloud hanging over our heads? This genetic disease is called SPTAN1.
Bec stepped up another gear which I guess you would expect. She researched, she joined groups, she yelled and screamed and she cried. Oh boy have we cried a lot during this first six months.
William continues to battle, his life may never be easy like you and me but he soldiers on. He has spent over half his life in hospital, at times very sick but yet he battles. My boy is a warrior like no other! I could not endure what he has but he takes it with barely a whimper and strives forward.
I hold faith that whilst the road ahead will have challenges we will be ok, William will be ok. We just don’t want him to suffer. We understand he isn’t normal but his normal is perfectly fine with us.
As you have read, a lot has happened but we are so grateful that William has fought so hard. We are equally as grateful for all the love and support from our family and friends.
Here’s to hoping the next 6 months is easier than the first.
With love Brad, Bec, Sophie & William.