4-year-old who received new heart after waiting 1,025 days goes home from hospital

(NEW YORK) — A 4-year-old girl was discharged from Texas Children’s Hospital on Thursday after waiting on the organ transplant waiting list for 1,025 days, or nearly 3 years.

The staff at Texas Children’s Hospital in Houston lined the halls on April 18 to give 4-year-old Arctura, who received a donor heart on March 29, a celebratory send-off parade.

“I like my new heart,” Arctura said ahead of her discharge, adding that she was looking forward to seeing “the ducks and the turtles” at the local park.

Arctura’s journey has been a long one. According to her parents and doctor, the 4-year-old was born with a congenital heart defect, which the Centers for Disease Control and Prevention notes is the most common type of birth defect.

In Arctura’s case, her heart’s tricuspid valve didn’t form as it should, causing issues with blood flow through the heart. Her heart was also dilated, causing it to be enlarged and impacting her lungs.

Arctura’s parents Madelyn and Joshua Nowak told “Good Morning America” that learning of their daughter’s condition at their 20-week anatomy scan was completely “devastating.”

“That moment when they said something might be wrong with her heart, I knew immediately that this wasn’t a little thing,” Madelyn Nowak recalled. “The world slowed down and dropped out from under me. My entire reality changed in a matter of a minute.”

Arctura was born April 1, 2020, in Tennessee, but after a couple of days, she was flown to Texas Children’s for further treatment, and she spent the first seven months of her life in the hospital. She received surgery to try to repair her heart and was able to be discharged in time for her first Christmas at home.

After a while, however, the Nowaks said they noticed Arctura’s health declining: She started vomiting more, showed signs of tiredness and had trouble breathing, they said.

In 2021, Arctura was re-admitted to Texas Children’s after she went into heart failure.

Dr. William J. Dreyer, a medical director at Texas Children’s, whose clinical interests include heart failure, cardio myopathy and cardiac transplantation, has been seeing Arctura since she was listed for a pediatric heart transplant.

“In her case, attempting to repair her heart didn’t go well and it resulted in her developing heart failure,” Dreyer explained to “GMA.” “And given the symptoms that she had and the condition of her heart, it was really necessary to move forward with a heart transplant plan.”

According to Dreyer, looking for a new heart for Arctura was complicated by the fact that she had developed HLA sensitization, where high levels of a certain antibody can lead to organ rejection.

“Part of what we had to do was look for a donor to which she was not sensitive to before transplant, which would have affected our ability to maintain immunosuppression in her and keep her from rejecting the new heart that she received,” Dreyer said.

After nearly 3 years, Arctura qualified to receive a donor heart.

On March 29, she underwent an orthotopic heart transplant, where her old heart was removed and replaced with a full donor heart in a transplant surgery at Texas Children’s that took about eight to ten hours.

Since her transplant, Arctura has been making steady progress and taking multiple medications that her care team hope to reduce over time.

“I think her prognosis is good,” Dreyer said. “She will need to recover, of course, from her surgery and adapt a bit to the medicines that she’s taking, which will diminish over the course of time, but at three months after transplant, I would expect her to be fully operational, if you will.”

With April being National Donate Life Month, the Nowaks and Dreyer hope to encourage others to consider organ donation.

“When you look at Arctura and you see how well she’s doing, I hope that people will think about the possibility of organ donation, should the circumstance occur, because it can be a very meaningful thing not only for the patient that receives the organ, but even for the donor family,” Dreyer said. “At a time of tragedy, it can really can make a tremendous difference.”

Madelyn Nowak, who called Arctura “the strongest person” she has ever had the privilege of meeting, also said she hopes her daughter’s story will also boost awareness about congenital heart defects.

“I had not heard of congenital heart defects or fully understood them until my 20-week ultrasound, and if you go to the 5,000 foot view, that’s scary that it is so common and never talked about,” the mom of two said. “How many people do you know that you don’t realize are affected?”