Jaxon Jay

18 April 2008 – 17 July 2008

Jaxon’s life wasn’t the longest but it was a very full and loving one. Born by emergency caesarean on 18 April 2008, unknown to any of us that he was already sick, even though I had polyhydramnias.


He was air lifted to Flinders NNU in Adelaide, because the umbilical cord had wrapped around his neck during birth and he had stopped breathing afterwards.

They had suspected brain damage, so he had to have his body temperature chilled and was ventilated for the first couple of days. During this time he barely opened his eyes and barely moved. When they heated his body back up to a normal temperature, because they had ruled out brain damage he started opening his eyes more and started moving. He was put onto CPAP and after a few more days, the doctors said we could try and take him off ventilation. 

He was doing well but after a couple of hours the doctors said they could see signs of struggle and that we had to put him back on CPAP for his safety, so we did and he continued to do well. At ten days old, when I got my first cuddle, it was time to try again and this time he stayed off, just got some intra nasal oxygen and only had that for another week or two, then we started him on feeds by tpt and on a nasal gastric – he would just throw it back up.

We progressed and had lots of baths; when we had the first bath, I was so shocked, he kicked up such a fuss, I knew instantly he loved it. Meanwhile, doctors were still testing for what was wrong and when Jaxon and I were having one of our long warm cuddles, like we always had to have each day, a doctor pulled up a chair, the doctor Jaxon didn’t like and Jaxon instantly started crying. All I heard was that we had a diagnosis of Myotubular Myopathy and I started crying and said a friend had a child with x-linked Myotubular Myopathy and the doctor said that is what Jaxon had.

At maybe 7 weeks we were told he needed an operation, because a muscle in his stomach had closed over the entrance to his intestines, thus stopping his food from going anywhere. He did amazing through the operation and surprised the whole NNU.

Just after 8 weeks we were transferred to level 3, at this time Jaxon was almost too big for the baby bath. Jaxon had a lot of physio which I was shown how to do and was really starting to move. If I lent down to kiss him on his ear and he was grumpy he would push me away and he would try and catch the animals on his mobile. We had also started going to the family room on our own and I was doing his suction suddenly.

Just before 12 weeks he went down hill, he needed oxygen and wasn’t coping. Later that day his heart stopped – the doctors all gathered around and I asked them to help him. They gave him cardiac compressions and got him back. We were moved back into level 1 and the next day we were told he had had seizures over night and he wasn’t coping on the respirator, so we had to make a choice what to do if he didn’t cope when we took him off.

We took him off at lunch time on the 17th of July 2008 – he actually really picked up, it was amazing but later his stats dropped, his heart wasn’t coping. He passed away later that evening, in his father’s arms, with me reading his favourite book to him – Thomas the Tank Engine.