Imagine spending every hour of the day knowing you need to keep a close eye on your child in case he stops breathing.
Then also imagine not knowing what his physical and mental development will be as he celebrates each birthday.
This is the reality for Jayne and Cory Mitchell and their baby boy, Elliott.
After having two healthy girls, Charlie (5) and Jemimah (3), Cory and Jayne Mitchell were surprised, but over-the-moon, to find out they would be having a baby boy. By the third pregnancy Jayne felt like a pro and imagined this time would be relatively normal and ‘easy’ having gone through two already.
That was until Elliott surprised them, again, by deciding it was time to enter the world nine weeks early.
The ‘normal’ life Jayne and Cory had known was thrown into the unknown from that moment on as, after a relatively normal pregnancy, Elliott was born by emergency c-section and rushed to another hospital where it was discovered something wasn’t quite normal. Elliott was struggling to breathe without support and, at a glance, doctors thought it was due to Elliott having a smaller jaw and larger tongue but as he, and his jaw, grew the breathing difficulty continued and specialists quickly uncovered he had a genetic disorder known as 22q11 deletion syndrome also known as DiGeorge Syndrome.
DiGeorge is caused by the deletion of a small segment of chromosome 22, and can result in the poor development of several bodily systems, and has no cure. But the discovery of the syndrome didn’t solve Elliott’s breathing difficulty so cameras were sent down into his respiratory system and that’s when Jayne and Cory learned Elliott has Tracheobronchomalacia.
Tracheobronchomalacia is a condition that causes the wall of the airways to become weak and in Elliott’s case, would require him to have a tracheostomy – a tube in the windpipe – in order to be able to breathe, be less dependent on equipment in order to continue to develop and grow physically and mentally.
“It was the trache that got us, having to put a hole in his throat. Being told he basically needed life-support to breathe was pretty full on but there was no other option,” says Jayne.
Now at 17-months, Elliott is sitting on the mild spectrum of DiGeorge, and both Jayne and Cory have been trained by The Royal Children’s Hospital to manage his developmental support and all the equipment he needs to keep him breathing. “He needs eyes on him all the time. At night, he’s got a monitor on him to track his breathing but that doesn’t mean we sleep, it’s a constant worry,” Jayne says.
It was the Royal Children’s Hospital complex care team who first told the Mitchells about Very Special Kids, as they could see the couple might benefit from its respite service for ongoing support and a much-needed break.
At a similar time to when the hospice nurses were being trained to provide the medical, ventilation and suction care, to respiratory patients, like Elliott, Cory was offered, and wondering how he could take on, an educational trip to the US.
With Cory away, Jayne would be left with the difficult task of managing two busy little girls under five and Elliott, who needs constant eyes on him.
That’s when Very Special Kids stepped in.
“We booked into the hospice’s family accommodation for three nights and it was a lifeline. I was able to get a good night’s sleep for the first time in years, because I usually get up 5-10 times per night to Elliott, and just focus on my girls knowing Elliott was in the best care. I could check in on him when I wanted to, the staff just loved him, he was so happy – it was just phenomenal,” Jayne said.
Elliott recently had another stay in the hospice giving Cory and Jayne a few nights away, as a couple, and they continue to be supported by their Very Special Kids family support practitioner, Damienne. “I don’t know how families survive without the hospice, it was a lifesaver, a god-send. I’m excited about the rebuild because as Elliott grows, I know he will need different equipment and therapies so it’s wonderful, and comforting, to know we will have access to a modern facility,” Jayne said.
The couple add that the hospice is more than just a physical building to them; “We can already see that Very Special Kids is very much a community and we are excited to be involved for many years to come.”
“My biggest hope for Elliott is that when he grows up, he sees his differences as beautiful and important, the biggest tragedy is that he might not ever see that. Very Special Kids is so important to us, we are now part of a community where children are different, but they are all included and celebrated,” Cory said.
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Categories: Family News