In a new WMBD segment titled “What’s Your Story,” we take a dart, throw it at a map of Central Illinois, and find a special story in the town where it lands.
Our first stop was Washington, Illinois where we followed the story of a little girl with a rare birth defect.
“I mean, she’s amazing. She’s been through so much. She’s had to fight her whole life just to live. It hasn’t been easy.” Amy Beintum said about her two-year-old daughter, Hannah.
“Hannah is living with a rare condition called Heterotaxy which is a unique arrangement of organs that many times leads to complex heart defects. She has a hole in the upper and lower chambers of her heart.. and the connections to her lungs are on the incorrect sides and they are crisscrossed.”
Hannah’s been living with this condition her whole life, including an immune disorder due to not having a spleen.
“When your child is diagnosed with something that you’ve never heard of before and hearing about the heart.. It is scary.” said Beintum.
She says many children with Heterotaxy don’t make it. But for those who do, there isn’t currently enough information to know the possible lifespan.
“If you Google ‘Heterotaxy,’ it’ll say maybe a year because they don’t know.”
But that statistic wasn’t going to stop little Hannah from fighting the fight. From her first week in the NICU, to then going home after positive results, things were looking up.
“But then we brought her in for her first cardiology appointment when she was three weeks old.”
Amy’s family learned Hannah had 50 percent oxygen and needed to be admitted for her first open heart surgery.
“At that time I was handing my baby over to people who I just met. Like here you go, here’s my baby.”
But those strangers quickly became family to Hannah, Amy, her husband, Jason, and her other children, Maya and Ethan.
“After she had her first surgery she had a lot of complications,” said Beintum.
From a very rapid heart rate, to a feeding tube, Amy said it’s been a difficult journey, and their lives have been forever changed.
“I was a working mom. I was teaching and so was my husband. We had a larger house that was more expensive in Morton.”
But, a house isn’t necessarily forever– family is. And Amy says they wouldn’t change anything for the world.
“Hannah loves princesses. She loves to dress up and be a princess.”
Reality sets in Nov. 13, when Hannah has her second open-heart surgery.
“This one is the big one. She hasn’t had her full heart repair surgery yet so this one is going to fix the hole as well as they can.” said Beintum.
It’ll allow Hannah to hopefully get oxygen saturation in the 90s. And while she’s expected to recover within a few weeks, the scars will last a lifetime.
“Her scars have caused her to live, and have shown her courage and bravery.”