Sophie Conlon
Three months on from initial doctors appointments where he was told nothing was wrong, 15-year-old Dexter O’Dine is battling a life altering condition that has left him in need of a heart transplant.
Dexter’s mother Bianca Haggett said he had a puffy face and was complaining of being itchy and tired, but doctors put the symptoms down to puberty or allergies.
When symptoms worsened Dexter was taken to the Mount Gambier and Districts Hospital, which was the beginning of a whirlwind journey with no end in sight.
Ms Haggett said they did not know Dexter was suffering from a heart condition until they arrived in Melbourne three days later.
“We went to Mount Gambier Hospital on Wednesday,” she said.
“Dexter had been sleeping a lot, getting a puffy face, I took him to the doctors for blood tests and everything came back fine.
“Then we noticed on Wednesday he had a rather distended stomach so his stomach has ballooned to probably about three times its size.”
Locally Ms Haggett said doctors discovered Dexter’s heart was enlarged and was leaking fluid.
She said he was flown to Adelaide on the Thursday, where she was told her little boy would have the fluid drained and he could go home.
“We got to Adelaide and his father was informed it wasn’t that simple, and we were being transferred straight to The Royal Children’s Hospital in Melbourne.” she said.
“We were flown to Melbourne on the Friday and when we got here is when we found out the extent of where Dexter was actually at.”
Diagnosed with Dilated Cardiomyopathy, Ms Haggett said in simple terms the walls of Dexter’s heart walls had stretched to the point that they were too thin.
She said Dexter had been fitted with a left ventricular assist device (VAD) on September 29, which pumped the left side of his heart, and then on October 23 he was fitted with a Berlin Heart to assist the right side.
“Because he is so small for his age he can’t have two VADs, his chest isn’t big enough,” she said.
“One is connected to his heart on the left and the right one is actually on the outside of the heart and it does the pumping for him externally.”
It is hoped these devices will help Dexter heal enough until he is able to receive a heart transplant, which Ms Haggett said was his only option.
When he was fitted with the Berlin Heart, Dexter became a full time resident of the hospital, and it is expected he will have to permanently relocate there for at least the next 12 months.
Since leaving Adelaide on September 15, Dexter has remained in a medically induced coma, had 12 major surgeries and celebrated his 15th birthday.
Ms Haggett said they celebrated the day casually, and when Dexter wakes up they will share the memories with him.
“Dexter was in his induced coma… but the nurses decorated his room and we still had family members send him balloons and teddies,” she said.
“We took photos of everything so when he is awake and aware we can show him that it was his birthday and we celebrated for him.
“We’ll just celebrate again when he is awake.”
Six weeks after being admitted, Ms Haggett said doctors still had no clue what had caused the DCM.
“We have had a muscle biopsy done on his heart and we still do not know why this has happened,” she said.
“I’m a control freak, I like to have all the answers and realistically we don’t have any answers for Dexter.”
Ms Haggett said it was difficult to find peace while watching Dexter’s battle, but knew there was support around her.
“As a mum you don’t want to leave, you just want to be there and you would do anything to fix something, and there is nothing you can do, there is no way that you can help or make things better for them, as a parent that’s really hard,” she said.
“It’s a weird sensation, because you know you have so much support, people message you all the time, the phone doesn’t stop, but in reality you are just alone.
“Your family pops up and back, but in reality they can’t be here all the time.”
While her family had been facing its own battle, Ms Haggett said the support from the Mount Gambier/ Berrin community had been amazing.
“I am amazed, people we don’t know, people that don’t even know of us have offered support and assistance and this is for a complete stranger,” she said.
“It’s pretty overwhelming… this has been a completely different side of Mount Gambier that I didn’t know was there.”
She said it was great to feel the love and have the support keeping one side of her life afloat, while the other fell a part.
“It means that I can stay up here and I don’t have to worry about that other side of my life, I can just be here for Dexter,” she said.
“It made it that I can have a bit of normality for my older son, who’s 16, and my younger son, who is only four, they can go back to Mount Gambier and back to school, but then still have the resources that they can come up whenever they want to, rather than being stuck.
“I know from the enormous amount of people over here that not everyone gets that opportunity.”
The ongoing and undiagnosed DCM and multiple surgeries left Dexter’s body weak, and organs like his lungs struggling, but ultimately Ms Haggett said Dexter was in a good place.
She said doctors were planning to perform a tracheostomy on Dexter, which would see breathing tubes removed from his mouth and a trach tube put in to assist his breathing, and allow him to wake from the coma.
“That way we can wake him up and he can get the support he needs to communicate with us, but still have all the support he needs to get his lungs back to working on their own,” she said.
“He just needs time and no complications so everything can heal, and because there has been so much going on his little body hasn’t had time to rest.”
Ms Haggett said Dexter would be in for a shock when he woke up, but would take it all in his stride.
“There is a lot he is going to wake up to and be told has happened, because as far as I am aware the last thing he was told was that he was going to be put to sleep for a little while and they would see him on the other side,” she said.
“It might be a little difficult when he starts to grasp the concept of what this actually means for him, all the things that people with heart conditions aren’t allowed to do – it will change some of that.
“With Dexter’s personality and who he is he will just take it in his stride, he won’t complain, he never complained before all this that he was having issues.”
After going through this with her son, Ms Haggett said it was important parents trusted themselves and stuck up for their children in medical settings.
“With Dexter I was told it was hormonal, it was allergies, and I just knew it wasn’t, but I trusted them and this was a month worth of dealing with Dexter’s symptoms that to a normal person are not heart related,” she said.
“I knew something wasn’t right, but I just kept getting told it’s fine, and it makes me wonder where would we be if this had been picked up a month before it was.
“I didn’t fight for more answers and I should have.”
