Christie Simpson

I'm fundraising for the Children's Hospital Foundation

Our gorgeous baby boy Maverick was born with no complications and seemingly healthy. That was until a few days after birth we got results back confirming our bundle of joy had Trisomy 21 commonly known as Down Syndrome.  

He was such a beautiful surprise for us. We were truly blessed and somehow life just knew we needed him.

Unfortunately with having Trisomy 21 this comes with health concerns that he is more prone to having and our sweet baby ran into some of these very early on. 

24 hrs after being born they took Maverick into special care nursery at Ipswich Hospital and ran some tests and found he had low oxygen, low temperature, jaundice and did an ECG on his heart which he was referred to mater hospital for an echo scan as precaution as babies with Down Syndrome generally have some form of heart issues. 

As he was being transferred to the Mater we received a call from an oncologist Dr at Queensland Childrens Hospital saying plans have changed, Maverick had a high count of abnormal white cells and that the oncology team there were wanting to keep a close eye on him, so he ended up at that hospital instead and straight into the intensive care unit. They did the echo scan overnight and discovered a medium size hole in his heart that thankfully doesn’t require anything to be done at this point if at all.

Over the few days he had been there his blood tests appeared stable and they were comfortable transferring him back to Ipswich hospital to continue monitoring him. 

6 days old the same day the transfer was meant to happen Maverick took a sudden turn for the worse and his body indicated he needed help and quick action was required. He deteriorated rapidly his breathing had changed he was working really hard to breath. He wasn’t releasing any co2 from the oxygen he was on so they had to put him onto high flow oxygen to force that out.

They moved him back to PICU. It honestly seemed like one thing after another and something different happening with him every day that it was almost hard to keep track of what was going on exactly.

They ran numerous tests to work out what was going on, ultrasounds, X-rays and blood tests. These tests came back that he had fluid around his heart, his blood was gluggy and was having trouble pumping through his body, his potassium was high and started antibiotics for a chest infection. 

It was then the dr had told us that the quick onset of all of this was due to an increase in his white blood cells which is linked to what they call TAMS, a form of pre leukemia associated with Down Syndrome that normally presents itself within the first few years of life. 

Maverick's condition had become life threatening and so at just 7 days old he was undergoing a low dose of chemo to rid those nasty cells which helped clear everything up that was happening to him. He did require a blood transfusion after chemo as his red cells dropped to low.

Thankfully the treatment did what it was meant to and he is now home and doing well. The leukemia does have the potential to present itself again in years to come. Fingers crossed this isn’t the case.

Mavericks journey hasn’t been an easy start but he has overcome so much in such a short time. One thing we know for sure is our little man has a tremendous amount of strength.

The compassion, thoughtfulness and the generosity shown by the Dr's, Nurses and the support and assistance we received from the hospital foundation helped make our scary journey somewhat easier when our world was being turned upside down. It is because of this we want to  give back.