CINCINNATI — A Bradford boy is starting the year off with a big change after he recently received a new heart.
Devin Miller, 14, of Bradford, is currently staying at the Ronald McDonald House near the Cincinnati Children’s Medical Center after undergoing a heart transplant at the end of last year.
“Devin was born with a condition called hypoplastic right heart syndrome,” Devin’s mother Tiffany Miller said. This meant that the right side of Devin’s heart was underdeveloped, so he only had use of the left side of his heart.
Due to that condition, Miller said that Devin has undergone a number of open heart surgeries.
“He had his first open heart surgery when he was seven days old,” Miller said. He had another at seven and a half months old, another when he was 3 years old, and a repair job when he was 8 years old.
“Devin had been doing well up until about three years ago,” Miller said.
Devin then developed a rare condition called plastic bronchitis, which causes severe respiratory issues. According to the Children’s Hospital of Philadelphia, in children with this condition, “lymph fluid builds in the airways and forms rubbery or caulk-like plugs (known as casts). These casts block the airways, making it difficult to breathe.”
“It looks like they are coughing up pieces of their lung,” Miller said. “The only cure to plastic bronchitis is a heart transplant.”
Devin treated his plastic bronchitis with a specialized therapy, nebulizer treatments, and inhalers, but they also sought help at the Children’s Hospital of Philadelphia for a specialized procedure to put off having to under a heart transplant.
“The first procedure worked for Devin for about two months. He didn’t cough anything up, but he still had to continue with that airway treatment,” Miller said.
Miller said that they went there twice in 2016, first in May and then again in December, but it came to a point where Devin would either have to receive that procedure once a month or move forward with the transplant process.
They tried to put off the transplant process for as long as possible to give Devin more time.
“Devin wasn’t ready. Devin didn’t like the idea of having to have that done. He was very scared, but ultimately we know that was what needed to be done,” Miller said.
Devin was listed on the transplant list on Jan. 18, 2017, and he was admitted to the hospital on Nov. 27 when his health started to decline even more and he began showing signs of heart failure.
“At that point, Devin was coughing up a lot of blood,” Miller said.
After that, Devin was placed at the top of the transplant list. He wasn’t in the hospital for a full seven days before there was a heart for him.
He and his family found out that there was a heart for him during the early morning of Dec. 3. The doctors took Devin to surgery at around 4 p.m. that day, and his heart arrived at the hospital at a little after 11 p.m. He was in surgery for about 14 hours before he got out the next morning and his family was able to see him.
“His heart has been doing very well,” Miller said. “He had a lot of issues with his lungs.”
He had to remain intubated longer than normal after his surgery — which is the insertion of a plastic tube into the trachea (windpipe) in order to keep his airway open — and he had to be re-intubated three other times after his surgery.
“He actually moved to the step down unit on Christmas Eve,” Miller said.
They are currently staying at the Ronald McDonald House, which is a living facility right next to the hospital for families to stay in if they are not from the area. As a transplant recipient, Devin needs to stay close to the hospital for a few months for testing and in case there are any issues with his heart.
“He’s feeling good,” Miller said. Medically, Devin has been doing well and is undergoing physical therapy to build his muscles back up.
“Mainly now we’re just working on his mental state,” Miller said.
Devin hasn’t been able to go to school for awhile and is missing home, Miller said. The stress of the procedures and the surgery also appear to have worn on him.
“He misses his animals and everybody back home,” Miller said. Miller added later, “He’s an animal lover.” Devin has a number of pets, including a cat, a dog, a bunny rabbit, and a hermit crab.
“He definitely missed going to school. He always loved going to school and seeing his friends,” Miller said. Devin is also a gamer, likes superheroes, and is interested in trains.
Devin also has recently become interested in wolves, and he hopes to visit a wolf sanctuary in Indiana once he is well enough to travel again.
“That’s kind of Devin’s goal for when he is able to get out of here,” Miller said.
Her husband Jack and their daughter Kaya, 6, spend time with them on the weekends.
“She has handled things very well for a 6 year old,” Miller said. “She spends a lot of time with my mom.” Other relatives visit them a few times a month. Miller said that they spend a lot of time video-chatting with family.
Going forward, Devin has another biopsy scheduled for Feb. 12 to test for levels of rejection with his new heart as well as for how the new heart is functioning. After his last biopsy, he had a mild case of rejection.
“He actually tested as a 1A, which is still good … there’s a little bit of rejection going on,” Miller said. Miller explained that levels of rejection break down from 1A and 1B as mild cases to more severe cases being 3A and 3B. Right now, Devin’s level of rejection may mean he might have to stay on medication a bit longer.
“We’ve had a lot of support from everyone in Bradford, a little bit more than what I thought we would have,” Miller said. She added that people from other states have also reached out to them with their thoughts and prayers.
“He’s had a lot of prayers and support from people we don’t know and have never met,” Miller said. “We’re thankful for everyone of them and everything they’ve done.”
They are also grateful to the donor and the donor family. Devin and his family do not know who they are as there is a year resting period before the donor family can learn more about Devin if they choose.
“We are very grateful to the donor family and appreciate what they have done for us,” Miller said.
As for the journey to improve Devin’s health, “We’re still in it,” Miller said. “We’re hoping that with the results of this biopsy that we may get to come home sometime in April.”
Miller asked that the community continue to keep Devin in their prayers.
“His heart’s doing well, but he still needs inspiration to keep his spirits,” Miller said.
For updates, people can follow the “TEAM DEVIN” Facebook page. They are currently not holding any fundraisers, but if anyone would like to donate to Devin’s medical expenses, they can contact his grandmother Christa Crick at (937) 573-7721. Miller also said that people can donate to the Ronald McDonald House to help other children and families in need.
Reach Sam Wildow at firstname.lastname@example.org or (937) 451-3336