GREAT FALLS — A Great Falls family has uprooted their lives to temporarily relocate to Florida after a heartbreaking diagnosis of their unborn son Maverick. Lindsey Stenger talked with the family about the rollercoaster their lives have been.
From the Maverick Strong website:
Our little boy was diagnosed with CDH (congenital diaphragmatic hernia). This means that his diaphragm was not developed properly allowing for his abdominal organs to rise into his chest with his heart and his lungs. This means that his lungs will not be able to develop properly, maybe not at all depending on the level of severity.
We were referred to Texas Children’s Hospital in Houston, as they are more experienced in CDH and we are not able to deliver our son here in Montana. After our visit there, we consulted with Seattle Children’s Hospital and John Hopkins All Children’s Hospital in St. Petersburg, Florida. There is not the proper equipment needed to care for him when he is born.
Ultimately it was decided that our baby would receive the best care at John Hopkins. Maverick will need very specialized care and it will require us to temporarily relocate to Florida, leaving behind our pets, our jobs, and our sense of normal.
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Imagine being a newlywed excited to expand your family. After receiving the exciting news that you were pregnant you go in for a regular checkup only to get the news no mother or father wants to hear.
“ it was just a regular checkup that turned into a nightmare pretty quickly because people are telling you something is wrong with your baby and the thing that’s wrong you’ve never even heard of.” Says Wes Ryan's father of Maverick Ryan an unborn baby diagnosed with a Congenital diaphragmatic hernia or CDH. A condition where the diaphragm isn’t developing the way it should leaving abdominal organs to be able to move and crowd the organs such as the lungs and heart.
Mother Stephanie Ryan says that although this is a rare case it’s not as rare as you may think.
I thought that this was a lot rarer of a condition because I had never heard of it before, and I didn't know what CDH was. But it affects a lot more babies than you would think, the same as spina bifida.”
Rare condition or not known mother or father ever wants to hear the words “somethings wrong with the baby.”
After their diagnosis, the couple travel to hospitals in Missoula and Texas trying to find anything and everything out about this condition they could.
“ There's really no Nic-Us that are capable of handling his condition in Montana.” Said Stephanie
So, after the two did the research they settled on packing their bags and heading to John Hopkins children’s Hospital in St. Petersburg Florida.
“ After some research we really believe that we are in the best place possible for this condition, and we really want to give him the best fighting chance.” Said father Wes.
So, the two pack their bags and left basically everything behind. Their jobs, their animals, their home friends and family and their oldest daughter.
“ I obviously miss my parents and I want them to come home as quickly as possible, but I also want to make sure that my brother is as healthy as he can be.” Says 11-year-old Rylee.
And while the two are focusing on doctor's appointments their families have been busy back here in Great Falls fundraising and raising awareness.
“ It's really hard to watch your kids go through something like this because you want to just help them and you can’t.” Said Stephanie is a stepmom, Dawn Kunkle.
In hopes of alleviating some financial stress their families here have set up a Venmo account, created a benefit and Will be raffling off some big-ticket items.
The Maverick benefit will be held on July 23 at 6 PM at Heritage inn. There will be a adore piano show followed by a raffle.
“ we are really hoping that the community gives back because they have done so much for their community and they’re just so selfless.” Says Dawn.