Lions help family purchase much needed medical equipment
Shannon LeClair
Times Reporter
Having a new baby can be a big enough challenge but when the child is born with health problems, a whole new world of challenges can arise.
“Mia was born August 8, 2009 and right from day one it was troubles. She has what’s called Pierre Robin, and it’s a sequence not a syndrome,” said Cathy Rhodes, mother of Mia and five-year-old Wyatt.
“So she had a cleft palate and her jaw is quite a bit back farther then most kids so her actual tongue will close her airway off.”
Mia spent 109 days in hospital, not coming home until just before Christmas.
Rhodes said the first day she had a Nissen fundoplication, anytime Mia would eat she would aspirate, she would throw up, and it would go down her airway. Surgery was done so that the top of her stomach is wrapped around the bottom of her esophagus. Mia can’t throw up or burp, ever.
Rhodes said anytime someone eats they get gas buildup in their stomach so now Mia has a tube that’s connected to her, and there is a syringe that allows the air bubbles out, so it’s like burping.
“She’s 100 per cent tube fed, so we have a pump and she’s hooked up to a bag a few times a day. Overnight she’s fed all night long,” said Rhodes.
Mia has a little g-tube that connects to her stomach, which is how she is fed. The doctors thought she might have started eating now but she won’t take anything. Rhodes said there were some kids at the hospital who are 16-years-old and still tube fed overnight because they can’t ingest enough calories during the day. Rhodes said she thinks that may be where they are going with Mia.
Mia was on oxygen for a long time and Rhodes said she wasn’t growing; she was sweating heavily at night and snoring a lot. She thought something was wrong, so they had a sleep study done on Mia.
“We were told that she had severe obstructed sleep apnea,” said Rhodes.
She said most kids are given a number for how many times an hour they either obstruct or completely stop breathing. Twenty is considered a high number; Mia’s number was 100 times in one hour.
“They said really you’re quite lucky that she’s still here, because that’s pretty crazy and then they said that we needed a c-pap machine, which is a constant positive air pressure (machine). Then in the same breath they said she really, really needs it, its $2,500 and it’s not covered.”
It costs the Rhodes’ $900 a month just for formula, plus Mia needs the feedbags and medical supplies. To be told they needed to come up with $2,500 was news they couldn’t afford to hear.
Rhodes did some looking around and starting phoning different government organizations to see who would help, no one wanted to help.
She said she was told that if the c-pap were for herself or her husband it would be covered but because it was for a child it wouldn’t be. She decided to write the Red Cross and the Strathmore Lions Club to see if they may be able to help. The Red Cross met with the Rhodes, and began to phone all of their resources. After continuing to do research online Rhodes found a c-pap machine being sold in Toronto for half of the price.
“Albi Homes gave us $500 to put towards her c-pap machine and then the Lions Club actually gave us $1,500, so it paid for her whole machine,” said Rhodes.
“I think the most frustrating thing for me is, it’s so wonderful that we have those organizations that are able to help us, but we can’t be the only family.
It sucks already to have a small kid that is sick and it sucks even more to know that you can’t even afford the stuff that is going to keep them alive. We would have sold our house if it had come to that, but should it come to that? Should the government not say it’s a child and she’s going to die unless she has that machine?”
She said they were lucky to have the organizations step up to help that they did. Rhodes said she and her family are hugely thankful to the Lions for helping their family out the way they did. She had written a letter and asked them to help anyway they could, no matter the amount.
“It just seemed like the only people that were willing to help was the Lions, the Red Cross and Albi Homes,” said Rhodes.
The family still has a long journey ahead of them, but Rhodes said she has great family support, and Wyatt is the best big brother, intently looking out for his baby sister already.
“We have a fantastic little family, just a little more challenges than most.”