BY NANCY GAGNET | MIRROR REPORTER — Josh and Stacie Aultman were filled with joy when they learned that Stacie was pregnant with twins.
The Maumee couple planned that soon they would welcome the new bundles into their home, where older brothers Cody, 10, and A.J., 7, were also eagerly awaiting their arrival.
Then, at 27 weeks gestation, an ultrasound revealed that one of the twins, Brady, had a serious heart defect. The other twin, Elliot, was healthy. Further examination determined that Brady had truncus arteriosus, a rare type of heart disease in which a single blood vessel, a truncus arteriosus, comes out of the right and left ventricles instead of the normal two vessels, or the pulmonary artery and aorta.
In utero, Brady was fine, but as soon as he was born, doctors would begin working to repair his heart. The couple had made arrangements to take Brady to the University of Michigan C.S. Mott Children’s Hospital, where he would receive surgical repairs from the world-renowned pediatric heart surgeon Edward Bove and his assistant surgeon, Peter Sassalos.
“It was important for Brady to go full term,” Josh said. “And Stacie was determined to make sure he did.”
The twins were born on October 7, 2017 at Toledo Hospital, and after three days in the neonatal intensive care unit, Brady was transported by air ambulance to the University of Michigan.
He had his first surgery at 6 days old and the initial prognosis looked promising, but later tests determined that his heart wasn’t pumping properly and Brady would need a second heart surgery.
“We were devastated,” said Josh. “They told us that it is another big surgery and not every kid comes back from it.”
Working to repair a tiny valve the size of a pencil eraser required another eight-hour surgery. After two weeks, the couple received more bad news – the valve was leaking. In addition, there was a vascular ring around his trachea, so he couldn’t breathe without a tube, which meant he needed a third surgery to correct that issue.
“We were beside ourselves and we kind of got the feeling that they were getting to the point where they didn’t know how to proceed to do any more for him,” Josh said.
Brady survived the third surgery to correct the trachea, but was still experiencing severe truncal valve regurgitation, so the couple began exploring every option. They were preparing to move Brady to Boston to undergo a new technique developed in Japan – one that had only been performed on 20 kids – in which a graft of his heart tissue would be used to make a new valve. Just before they were ready to have him transported, the doctors at Mott offered a different solution.
Surgeons and doctors from all different fields of medicine gathered to discuss Brady’s situation and the best course of action to help him. In the end, they decided to implant a mechanical valve into his heart.
“There were not great options, but we had a lot of faith in Michigan. They had gotten us so far and we had seen the stuff they did and how amazing they were – so we decided to trust them to do it,” Josh said.
After the surgery, Brady was alert and looking around. Two weeks later, the tube came out and he started making a full recovery.
“We learned later that Brady is one of the smallest children in the United States to receive a mechanical aortic valve and survive more than 30 days,” said Josh.
While Brady spent his first six months in the hospital and had to undergo major surgeries, including his last surgery to implant the valve in February 2018, today Brady is home and doing well.
Josh and Stacie are grateful for the care their son received, especially from their nurses, Jackie Peiffer and Kim Zaleski – whom they specifically requested to be on Brady’s care team. At Mott’s, the care team takes care of the patient for the entire duration of their hospital stay as well as all return visits.
“So it’s a lifetime commitment,” Josh said. “We saw them as the perfect team.”
The Aultmans also learned that Jackie lives in Maumee.
“She’s a very special person,” said Josh.
While the care Brady received has been exceptional, so have the medical expenses, which reached more than $3 million. Fortunately for the Aultmans, who are both self-employed, Josh purchased critical illness insurance for their family, which covered Brady’s heart surgery and his other medical expenses.
Brady, who is approaching his first birthday, relies on a feeding pump and regular medication. In addition, a home health nurse visits him three times weekly and an occupational therapist sees him regularly. He continues to return to the University of Michigan Mott Children’s Hospital to see a variety of doctors, including kidney doctors and cardiologists.
“Our hope right now is to get to age 4 before he needs another surgery,” Josh said.
Before he reaches adulthood, Brady will also need three to four more surgeries to replace the mechanical valve and pulmonary conduit.
For now, the couple remains hopeful and grateful.
“It’s hard, obviously. Even now, every day is not guaranteed,” said Josh. “He’s got a heart that’s like patched together with bubble gum. We just enjoy every day and look at every day as a gift.”