Six-month-old Evansville boy born with hypoplastic left heart syndrome is on the transplant list.
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
Noah Meth looks up over his mom’s shoulder, eyes wide and curious.
After spending all but two days of his life in the hospital, he is used to seeing different people pop in and out of his room. He is alert yet comfortable in his mother’s arms.
Like most 6-month-olds, Noah is happiest when someone is holding him. Especially when that someone is his mom, Haley Engwer, who makes the 2½-hour drive from Evansville every Tuesday so she can spend a few days with her baby boy in the CVICU at Riley Hospital for Children.
On the weekends, she swaps places with her husband, Ryan Meth, who comes up to Riley, and she returns to Evansville to spend time with their older son, Levi.
It’s a season of life they never anticipated when Haley learned she was pregnant with Noah last year. Then came the diagnosis of a heart defect in their baby boy while he was still in utero.
Hypoplastic left heart syndrome, sometimes known as half a heart, is a serious congenital heart defect where the left side of the heart is underdeveloped, preventing it from pumping enough blood to the body.
It typically requires three surgeries over two years to repair. If reconstruction is not an option, a heart transplant is needed.
Getting that diagnosis was a blow, but the couple prepared for the birth and welcomed 8-pound 3-ounce Noah in Riley’s Maternity Tower back in September.
The first stage of the repair on Noah’s heart took place not long after he was born, with Drs. Mark Rodefeld and Jeremy Herrmann at his side in the operating room.
Noah required additional intervention, including ECMO (extracorporeal membrane oxygenation) to give his tiny heart a rest, but after 70-plus days, he was discharged home to the delight of his parents and his big brother.
“It was awesome … for a little bit,” Haley said.
That lasted all of two days before his oxygen levels began fluctuating too much. His parents took him to a hospital emergency department in Evansville, but after 11 hours he was transported to Riley, where eventually the decision was made to put him on the heart transplant list.
He was in heart failure.
It was a crushing blow for the family, who had prepared for one scary journey, only to be faced with another one, perhaps even scarier.
Still, they said, there’s no place they’d rather be than Riley for Noah’s sake.
Now on the heart transplant list for 61 days, Noah has made himself at home in the hospital, charming his care team with his smiles, wiggles and giggles.
He loves watching Ms. Rachel while he’s cuddling with his mom or entertaining nurses who drop in just to get their Noah fix.
“He has so many moms here and so many aunts and uncles,” Haley said about the Riley team.
As if on cue, two nurses stopped in to see Noah during their break.
Grace Huber and Tayah Irvin say he is their favorite part of coming to work, even when they are not his primary nurses. They just like to give him a little extra love.
That’s the thing that Haley and Ryan love about Riley – the way the team goes above and beyond to care for their baby in all the ways that matter.
“They treat him like family.”
While the couple wait for word of a heart that matches their little boy, they celebrate milestones in the hospital, like him rolling over for the first time or tasting pureed baby food, even as a G-tube provides most of his nutrition.
“I didn’t think it was possible to take more pictures with your second child, but I have managed it,” Haley said with a laugh. “There are so many things to document.”
There is no way to know how long the wait will be for their son to receive a hero heart, but Haley and Ryan do their best to stay upbeat.
“We have a really good support system at home, and we are so grateful,” Haley said.
But their mood depends on him.
“Some weeks are harder than others. He’s working on two teeth right now (another milestone), so last week was rough, but we just go with the flow.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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