‘We don’t know what to do’: Quincy family facing financial crunch as son needs medical care in Pittsburgh hospital

QUINCY — Staying in St. Louis for the past nine months to be bedside with her hospitalized son has been a drain mentally and financially for Abby and Cody Deming of Quincy.

What it also means, though, is their son is still fighting.

Emmett Deming was born Sept. 20, 2023, with severe Ebstein anomaly, a congenital heart defect that’s present at birth. One in 200,000 children is diagnosed with Ebstein anomaly, and only five percent of those cases are diagnosed as severe. 

The Mayo Clinic says the tricuspid valve that separates the top and bottom right heart chambers did not form correctly and doesn’t close as it should. Blood moves backward from the bottom to top chamber, making it more difficult for the heart to work. In people with Ebstein anomaly, the heart can grow larger. The condition can lead to heart failure.

“We were told so many times that Emmett was not going to make it,” Abby said. “Our whole pregnancy, (the doctors) really prepared us for him to not make it. Then that first month was really hard. His surgeon came to us many times and said that none of the team thought he would make it to a month.

“That’s why we never saved for more than that. We kind of saved as much as we could in the short time that we had. We thought we were going to have a 30-day stay, and I even thought maybe 60 days, but they really just didn’t think he would make it.”

Emmett has been a patient at St. Louis Children’s Hospital since birth, and he had his first open-heart surgery at five weeks old. He since has undergone another open-heart surgery and several cardiac catheterization procedures. He also was diagnosed with Abernethy malformation, a rare deformity of the blood vessels in the abdomen. Emmett also recently began battling cellulitis under the skin in his neck and face. It is painful and causes quite swelling.

Nine months later, Emmett is hanging in there.

However, Abby says the past 13 weeks have been particularly difficult. Emmett underwent a Glenn procedure on April 1 that sent blood from the upper body directly to the lungs. Emmett’s single ventricle only had to pump blood to the body (and not to the lungs) so it didn’t have to work as hard. However, Emmett had breathing issues that required intubation, and he never truly recovered.

A cath lab procedure on April 23 to coil collateral vessels helped Emmett progress. However, his respiratory status has since deteriorated, and he is back on a ventilator. 

The team of doctors in St. Louis believes the care Emmett now needs is available at Children’s Hospital in Pittsburgh. However, finances are a concern.

Abby is a stay-at-home mom. Cody worked in the warehouse at Farm and Home Supply until Emmett’s delivery, and he hasn’t returned to work. Their 2-year-old son, Oliver, has stayed with them occasionally in St. Louis. The family stayed in Emmett’s hospital room for 2½ months before they finally got a room at the Ronald McDonald House.

“We’ve been fortunate enough that our family has helped us out a lot, and we’ve had money put away to get us to now,” Abby said. “But with the transfer, we don’t know what to do.”

Emmett will be on an intensive care unit (ICU) flight to Pittsburgh, which could lead to out-of-pocket costs for the family. The Demings will be on their own for gas to get to Pittsburgh, then food and lodging until they can get a room at another Ronald McDonald House.

“It’s just hard to acknowledge that, if our insurance decides they don’t want to cover (some of their expenses), we’ll have to … I don’t know what our options are,” Abby said. “The hospital here doesn’t really have a lot of options. It’s very stressful to think about the possibility. It’s just been a big waiting game, and that’s been the hardest.

“But today, (Emmett) was smiling. That is not something that’s always been happening, so that was so nice.”

Haley Welty, Abby’s sister, recently started a GoFundMe page for the family with a goal of $10,000. Abby remains hopeful.

“We will always remain optimistic because he has proven everybody wrong every single time,” she said. “Emmett is so happy, even when he’s trying to wean off those sedation beds and he’s having a hard day. He’s still smiling and laughing. Just getting to hear his cry after being intubated for so long is a miracle in itself.

“All we want is for him to get the help he needs. I know there’ll be a day when he comes home, and we can all just be home together.”

Follow Emmett’s journey on Facebook at “Emmett’s Cardiac Quest.”

EDITOR’S NOTE: The Deming family learned on Friday that Emmett’s medical bills will be covered by insurance. However, the family still needs financial help to make the trip to Pittsburgh and pay for food and lodging there.