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Baby’s heart transplant allows her to come home

Mirror photo by J.D. Cavrich/Mirror photo illustration by Lindsey Shinn / Abby Levine and Eric Vey craddle Gwendolyn. Gwendolyn received a life-saving heart transplant at UPMC Children’s Hospital in Pittsburgh.

Mirror photo by J.D. Cavrich/Mirror photo illustration by Lindsey Shinn / Abby Levine and Eric Vey cradle Gwendolyn. Gwendolyn received a life-saving heart transplant at UPMC Children’s Hospital in Pittsburgh.

The nurses in the intensive care unit at UPMC Children’s Hospital in Pittsburgh were smiling as Abby Levine walked in.

Levine’s baby, Gwendolyn, was about to receive a new heart, which would help ensure her survival, after four touch-and-go months

following her birth in May 2016.

Levine, however, wasn’t smiling, because of what had happened on “the other end” — the traumatic death of a young girl in Philadelphia, whose heart was on the way to Pittsburgh.

“Someone else’s heartbreak is our, like, saving grace,” Levine said.

Now, five months later, baby Gwendolyn is home in Altoona and doing well, although that sobering thought remains.

Eventually, the families may talk about what happened.

“(But) I don’t know if I’m quite ready to reach out,” Levine said. “Or whether they’re ready to hear from us.”

Levine learned about her daughter’s heart defect — pulmonary atresia or blockage of the valve through which blood travels from the heart to the lungs for oxygenation — when she was 24 weeks pregnant.

“I didn’t handle it very well,” Levine said at her home in Westfall a few days ago, as her fiance, Eric Vey, cared for the baby, who was quiet, with occasional coos and murmurs and groans. “I was bawling hysterically.”

But a doctor from Children’s cardiac unit reassured her.

“He was like, ‘She’ll need a couple surgeries, but she’ll be OK,'” Levine said.

One of that doctor’s patients with a similar problem was by then 15 years old and rode an ATV.

The doctor didn’t mention abortion.

“I wasn’t given the option,” Levine said.

She’s not sure how she would have responded if she had been given that option. She was raised Catholic, and abortion runs counter to Catholic teaching.

But her own beliefs are “unorthodox,” she said.

Moreover, her pregnancy had been difficult and she was in “a bad state,” she said.

“I can’t speak for myself as I was then,” she said.

But she’s grateful it didn’t happen.

“I definitely believe someone was out there watching (Gwendolyn),” Levine said.

After the doctor’s initial reassurance, Levine grew worried after researching pulmonary atresia and discovering “awful stories.”

The antidote came from an acquaintance of her mother’s who connected Levine with a support group for the parents of children with heart problems.

Those parents told Levine to desist in her internet research.

They also told her how well their kids were doing.

“They gave me a lot of hope,” Levine said.

Shunt fails to work

Levine delivered Gwendolyn at UPMC’s Magee Women’s Hospital, after which medical workers took the baby to Children’s.

Doctors stabilized her there and put her on a breathing machine. They kept her in a state that mimicked conditions in the womb, using her umbilical cord as a central line for medication and giving her a drug that held open the blood vessel prior to birth that allows oxygenated blood to bypass the lungs.

They also performed the first of what is normally a series of three operations to rectify Gwendolyn’s condition, placing a shunt to bypass the defective valve, so blood could go from the heart to the lungs.

But because of twisted arteries that had developed in her body’s vain attempt to find a way to get blood to the lungs, the operation didn’t work, and her lungs collapsed several times.

So she wasn’t eligible for the two followup operations.

She would need a transplant, doctors told her.

“(That) was a scary day,” Levine said.

She resisted at first.

She thought about “the other end” — the necessary death for a donor heart to become available.

And she thought of the excruciating wait for that to happen.

She thought also about how her baby was being continually poked and prodded and tested in the hospital.

“I didn’t want (Gwendolyn) to have a life of surgeries,” Levine said. “I just wanted to take her home and let her pass.”

But as Levine learned more from the transplant team, she became more comfortable with the idea.

She learned that people can keep hearts for 20 or 30 years before they need another, she said.

She also met the mother of a boy who had received a transplant.

“I saw actual hope in that,” Levine said.

She also realized that because a transplant was a last-resort option, it was necessary to consent to one, if she was to “go down fighting.”

Baby remains hospitalized

Gwendolyn was in the hospital from May 5 to Nov. 15.

Levine stayed there continually for two months, then resumed work at Champs in Altoona on weekends, returning to the hospital during the week. Her parents came on weekends, her mom one week, her dad the next. Vey visited on his days off from Champs.

Gwendolyn wasn’t stable enough to go home to wait for a donor heart.

“She was pretty much in heart failure the whole time,” Vey said.

In August, they got an “offer,” but the lead surgeon who traveled to harvest the heart refused it, because it had been damaged by infection.

“It took me a while to recover (from that),” Levine said.

Two weeks later, however, on Sept. 8 — the birthday of the Blessed Mother, Levine’s mom, Lisa Levine, noted — another call came, while Levine was asleep in the hospital guest house.

She panicked when she saw she’d missed the call, but the transplant team member she spoke to informed her that they had news “you’ll appreciate.”

When Levine arrived at the ICU, all the nurses were smiling.

It took 12 hours for the transplant team to get back with the donor heart.

When they did, they were in a hurry.

“Give her a kiss: We’re taking her back,” someone said.

Levine felt conflicted.

She was relieved.

“(But) I didn’t feel right about getting joy out of someone else’s sadness,” she said.

She and Vey stayed up all that night.

“It was a blur,” she said.

Eventually, the transplant surgeon, Melita Viegas, returned with good news.

The baby “rocked it,” Viegas said.

Levine and Vey went to breakfast while the medical team finished its work, and when the couple got back, they could visit the baby.

The idea of replacing a heart on someone as small as Gwendolyn is “almost like science fiction,” Vey said.

There were complications afterward — repeated collapsed lungs and an infection of the baby’s central line — but the removal of superfluous blood vessels and antibiotics corrected those problems.

Gwendolyn comes home

They brought her home in mid-November.

They are finally getting into a routine at home, Levine said.

“She doesn’t require crazy amounts of medicine and care,” Levine said.

A feeding tube goes through her nose and into her stomach, providing an avenue for medicine — including two kinds of anti-rejection drugs — and supplementary formula.

One anti-rejection drug masks the foreignness of the heart cells, so her body’s immune system doesn’t attack, and the other targets immune system cells that attack despite that camouflage.

The drugs, which compromise the immune system, make it imperative they protect her from infection, which means limiting trips outside the house.

“She can catch anything so easily,” Levine said.

The hospital monitors Gwendolyn frequently.

At one point, doctors detected a “very, very mild” rejection, but they filtered the baby’s antibodies, quelling it, Levine said.

Gwendolyn’s most recent tests showed she was doing much better, Levine said.

As she gets older, contact sports are probably out, but otherwise “she can pretty much do whatever,” Vey said. The couple were “friends” before they found out about the unborn baby’s problem, they said.

After learning how serious it was, they became more serious about their commitment.

“It caused us to lean on each other,” Levine said.

Eventually, they would have made that kind of commitment, even without the pregnancy, they said.

The pregnancy and the heart defect accelerated things.

“It ended up being good for her and us,” Levine said.

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