Henry's Journey
Henry McRae was born 09/05/16 with suspected Autosomal Recessive Polycystic Kidney Disease with liver complications.
Southland
Henry McRae was born 09/05/16 with suspected Autosomal Recessive Polycystic Kidney Disease.
Since he was born he has had numerous blood tests, scans, and other investigative procedures/monitoring to try and gain a diagnosis.
With his kidneys estimated to be only functioning at 30% he will need a kidney transplant at some stage in his life, most likely by the age of 5. There is a possibility of needing a liver transplant as well. He needs to reach 9kg's before meeting transplant criteria, therefore has been monitored for his weight and has required a special feeding regime, including a nasogastric feeding tube. This has been a rollercoaster ride as each day tells a different tale.
Henry was initially born in Invercargill hospital spending his first 3 weeks in the neonatal unit before the specialists deciding a transfer to Starship was necessary due to liver complications. After 2 weeks in Starship Justine and Tim are hoping to be able to bring Henry home but due to complications the time frame is unknown.
Throughout Henry's first few years it is expected he will be in and out of hospital with regular blood tests and observations to ensure his kidney/liver function is stable.
With no definite answers at this stage, it is likely that there will be a lot of ongoing travelling involved to Starship and other specialist appointments etc in the future.
We have started this page to help keep Tim, Justine and their 2 boys together as a family as much as possible throughout this ongoing journey with baby Henry.
Julie Anderson's involvement (page creator)
Myself and Anna (Henry's aunties) and the rest of their families want to support them through this challenging time. This was one way we felt we could endeavour to do this.
Latest update
One year on (since this page was started) 18 June 2017
Henry was only two weeks away from transplant and the Renal team wanted an ultrasound of his heart.
We went in for this 10 days ago to be told that he was basically in heart failure (for the second time!).
So as a result transplant date (our second scheduled date) of the 26th June has now been cancelled. He has a pulmonary stenosis (tight valve) that has lead his heart to be severely thickened. This in turn has caused a part blockage where the aortic valve is...and this is where the seriousness lies that means he is in no fit state for any kind of surgery, let alone a massive transplant.
At this point in time, he is on a beta blocker medication to allow his heart a decrease in its workload to bring the thickening back down to normal.
If this is successful, there will be a next step (we are not sure exactly what this is). He will need both a kidney transplant and an operation on the pulmonary valve, and which way round these will happen will be discussed in greater depth over the next month with Cardiac, Renal and Liver Consultants. We have been told we will be in these meetings (as we need to fully understand the seriousness of the decisions that we will need to make) will be an hour or more longer and we will be well outnumbered by all the medical professionals that are involved with Henry's case.
A lot to process and once again another hurdle...we only hope that this kidney transplant is not off the cards for good!
We once again, thank everyone for all of their support! We only hope our next update has more positive news to be told!
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