Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
Three year old Brax’s giggle is infectious and his eyes sparkle. He plays happily with playdoh while he has dialysis.
He has VACTERL association, a rare disorder that affects multiple organ systems, including the heart and kidneys. In Brax’s case, he was born with only one kidney, a heart murmur and a number of other birth defects.
His parents, Brooke and Gary, weren’t aware that there was anything severely amiss when Brax was born. He was transferred to PMH when routine tests revealed problems with his blood sugar levels.
Once at the hospital, it was discovered that Brax had been born without an anal opening and he was sent straight to surgery to begin the process of correcting this. He spent over twelve months with a colostomy bag while his body healed and to date, has had 11 surgeries.
Brax was able to go home after the surgery but a staph infection at the age of 13 months sent him back to the hospital, where staff discovered that the infection had affected his one remaining kidney, putting him into renal failure.
He currently undergoes dialysis three times a week, a machine performing the job of his kidney, until he weighs enough to cope with a kidney transplant. His mother Brooke is going to be his live donor.“Hopefully it’ll happen in the next few months,” Brooke explains.
The transplant will mean that they will no longer have to drive the 100 minute round trip to PMH for Brax’s dialysis, although Brooke and Gary don’t begrudge the time they spend travelling for treatment.
We are just so grateful that we have such a good hospital. All of the teams we have seen and all of the nurses take great care of Brax.
There has been a period of adjustment for the whole family.“Brax can’t do all the things regular kids do, like swimming, going to playgroup and playing with other kids because of the risk of him picking up a bug or infection are too high. I hope that I can take him out to do stuff in the future,” says dad Gary.
Despite all that he has been through, Brax is an affectionate, cuddly little boy, full of energy and always on the go. He loves playing with his cars and building things, and charms all who meet him. He is due to begin Kindergarten next year and Brooke is sure he will do well.
I believe that once he has his transplant he is going to develop so quickly. I think he might run me into the ground though – it’s going to be amazing!