When Hayze Hart was born, he was five weeks early.
According to WWLTV, the infant was also born with a rare birth defect called gastroschisis. His intestines were formed outside of his body through a hole in the stomach.
The Centers for Disease Control and Prevention (CDC) reports that an estimated 1,871 babies are born with gastroschisis in the U.S. every year.
Babies with gastroschisis need surgery after birth to move the intestines inside of the body and repair the hole in the stomach.
Hayze has been through five surgeries since April. Unfortunately, the surgeries have been unsuccessful in closing the hole that would allow Hayze to properly process digest food.
According to the family’s GoFundMe page, the baby hasn’t left the NICU yet.
But his family is fighting to get him the care he needs.
His mom, Catherine Consolini, told Dearly she was fortunate to find a hospital that specializes in gastroschisis:
“I did a ton of research and also have a very close friend who is a NICU nurse in Houston that recommended Children’s. I was also put in connection with a gastroschisis support group called Avery’s Angels. They are an amazing organization and have gone above and beyond in helping me!”
Hayze was accepted to a program at the Children’s Hospital in Boston that specializes in his condition. But a few weeks later, his insurance company denied the family’s request for transportation to leave the hospital in Metairie, Louisiana.
Catherine told Dearly it’s up to her family to pay for her son to see the specialists he needs to get better:
“The insurance denied my initial request and all appeals because they felt the transfer was not medically necessary and specialized care was not needed.
Now it’s up to the family to raise $28,000 needed to airlift the baby to Boston.”
Catherine is currently in Boston to fill out the necessary paperwork to move Hayze to Children’s.
She told Dearly:
“Once admission is approved, we will need to pay for his transport flight and also have him released from his current hospital. Once both of those are completed, he will be on his way to Boston.”
She wanted to share her story to raise awareness of gastroschisis and to encourage parents to advocate for their children in times of need.
“If I could tell them anything, I would say never give up. You are your child’s biggest advocate and if something doesn’t feel right, go with your gut. Don’t accept any less than the best for your child, no matter what anyone else says! If you get tired or feel defeated, take a break. Take a day to recoup and then come back swinging. And if there are any gastroschisis parents that need help or advice or just need a place to vent, I am happy to be there for them.”
The mom is hopeful she will be able to bring her son to Boston soon. She can’t wait for the day when she’ll finally be able to bring her baby boy home.