If you observed baby Aurora Vander Vennen at home today, perched in the crook of her father’s arm as winter sunlight washes over her, you’d never guess she had anything but a perfect start at life.
A relaxed 9-pound bundle dressed in peachy-pink overalls, Aurora shows no signs of the rocky road she and her parents, Alyssa and Justin, have navigated together from Day 1.
Yet this tiny, tough, treasured child has traveled a path perhaps no other baby has.
Aurora’s doctors at Spectrum Health Helen DeVos Children’s Hospital weren’t sure Aurora would survive delivery, let alone persevere through an untested treatment plan to recovery.
“Was she going to be able to be born? Would she need ECMO? What kind of surgeries would she need right away, and could they support her?” These were the kinds of questions he and Alyssa faced as expectant parents, Justin said.
“She was a pretty unique case.”
Congenital heart disease
Halfway through her pregnancy, Alyssa caught the first hints that something might be wrong.
Her 20-week ultrasound had to be repeated two weeks later because Alyssa’s doctor wanted better pictures of her baby’s heart. A third ultrasound, at 26 weeks, followed by a fetal echocardiogram, brought devastating news: The baby had a narrowed aortic valve and an enlarged left ventricle.
“Then it started,” Justin said. “It was just a whirlwind.”
On their doctor’s advice, the Vander Vennens, first-time parents from Caledonia, Michigan, consulted with specialists two hours away about a procedure to expand the aortic valve in utero. Learning about the risks this procedure would pose to both mother and fetus, and anticipating the stress of pursuing care so far from home, they closed the door on that option.
But what to do next?
Taking the advice of friends, family members and doctors, they made appointments with the Congenital Heart Center at Helen DeVos Children’s Hospital and the Spectrum Health maternal-fetal medicine team.
At their initial meeting, Heather Sowinski, DO, a pediatric and fetal cardiologist, did a fetal echocardiogram and confirmed the diagnosis of critical aortic valve stenosis, causing left-sided heart failure.
She brought in the co-directors of the Congenital Heart Center, Marcus Haw, MD, FRCS, a pediatric cardiothoracic surgeon, and Joseph Vettukattil, MD, MBBS, a pediatric interventional cardiologist.
Reviewing the case, the doctors recognized it as a rare and perilous scenario with “no accepted treatment pathway,” Dr. Haw said. “In a working lifetime, you have a handful of (similar) cases, so you have no data” to show the best course of treatment.
With input from colleagues, Drs. Vettukattil and Haw discussed the pros and cons of various treatment options—including placing the baby on mechanical support at birth and listing her for a heart transplant—and mapped out what they believed to be the most promising plan.
“I said, ‘There is a reasonable chance we can do something for this baby,’ and we set a plan for how to manage as soon as the baby was born,” Dr. Vettukattil said. “It was one of the more organized deliveries I’ve come across anywhere.”
A coordinated plan
Though for the Vander Vennens and their maternal-fetal medicine doctors the marathon began before Aurora’s birth, the intense part of the journey kicked off the day of Alyssa’s scheduled cesarean section at 37 weeks.
No fewer than 30 obstetric, neonatal and pediatric specialists and support staff met beforehand to review the detailed treatment plan. They would all be on hand the morning of Aurora’s delivery to respond to any contingency.
“We organized the birth to happen so everybody who might be needed was available,” Dr. Haw said.
Because Dr. Vettukattil hoped to do a catheter procedure to widen the baby’s aortic valve immediately after birth, the delivery took place in a children’s hospital operating room, right next door to the pediatric catherization lab.
“It’s the first time my scrub techs have seen a baby come out,” Dr. Haw recalled.
From the moment the couple arrived for the Oct. 29 delivery, every step was orchestrated.
“People knew what to do. Everyone was excited,” Alyssa said. “You could tell that this was a bigger deal than what we thought it was going to be.”
Plan A was to deliver the baby, evaluate whether she was stable enough for a balloon valvuloplasty of the aortic valve and, if so, take her straight to the cath lab for the procedure.
When the time came, events unfolded exactly as planned.
First, the division chief of maternal-fetal medicine, David Colombo, MD, completed the C-section. Alyssa and Justin saw their 5-pound, 12-ounce daughter ever so briefly before she was whisked next door.
After an echocardiogram confirmed the prenatal diagnosis, an anesthesiologist prepped Aurora for the balloon procedure. Dr. Vettukattil then ran a catheter to her heart and successfully opened the valve, relieving the obstruction. Her left ventricle, however, sat static.
“It was baggy and just twitching—no real contraction,” Dr. Vettukattil said.
So Dr. Vettukattil and his team carried out a complex maneuver to balance Aurora’s circulation. This involved creating a small hole in her heart to decompress the left chambers and allow some blood to flow from the left side to the right. They hoped that this procedure, combined with the valve expansion, would help her heart recover.
And slowly but surely, with around-the-clock intensive care, Aurora did recover, proving that her heart could manage on its own.
Repairing a leak
Aurora’s closely monitored recovery plateaued, however, just after Thanksgiving. A leak had formed in her aortic valve.
Her doctors, having half-expected this issue, revisited the possible solutions. One option: a lengthy, high-risk surgery that would include replacing Aurora’s aortic valve with her pulmonary valve. A second option: a shorter, simpler surgery to repair the leaky valve—one rarely performed in newborns.
Because Dr. Haw was fairly confident he could complete the repair successfully, the team chose the simpler option. Still, it would be an invasive surgery, so they wanted to hold off as long as possible and let Aurora grow. The bigger she was, the more resilient she might be; perhaps she could live with a leaky valve for months.
The doctors could live with the uncertainty of the time frame, but for the parents, it proved grueling.
“The hardest part was just waiting,” Alyssa said.
One of Aurora’s nurses likened the experience to a card game.
“He said, ‘She’s gonna play the hand, and we’ve just got to be ready to make a move when she’s gonna do it,’” Justin said. “And that’s what it was for weeks.”
At 6 weeks, Aurora let everyone know the time had come. Her heart function took a downturn, so Dr. Haw set the surgery for Dec. 8, a Saturday.
That turned out to be the worst day of all for her parents. While in pre-op, Aurora reacted to the anesthesia and went into cardiac arrest.
The team immediately hooked her up to the heart-lung bypass machine and stabilized her so Dr. Haw could begin operating. Meanwhile the family held their breath. They feared she wouldn’t make it.
But Aurora, their sweet little fighter, pulled through, and Dr. Haw’s intricate repair of her 4-millimeter-wide valve held.
After a three-day stint on an ECMO machine to give her heart a rest, Aurora emerged on the road to recovery. Her pace of recovery picked up so quickly that she went home earlier than expected—on the day after Christmas.
At home after 58 straight days in the hospital, Aurora’s parents are establishing new routines as they watch their daughter grow. Though it will take time for her heart to fully recover, everything is moving in the right direction.
“She should be able to play and be like a normal child,” Dr. Vettukattil said. “And we expect her life expectancy to be normal.”
It’s an “exceptional” outcome, Dr. Haw said, especially given her heart’s extreme dysfunction before birth. Looking back, he attributes their success to teamwork, specialized expertise and careful decision-making.
“If we had gone down any other pathway, we would not have such a good result—there’s no way,” Dr. Haw said.
Aurora’s doctors expect her to need valve replacement surgery someday, because her aortic valve isn’t likely to behave perfectly over time. Exactly how things will play out is anyone’s guess.
“Is it going to leak, is it going to become narrow, is it going to grow with her and function nicely?” Dr. Haw said. “Those are the three things that can happen.”
In these early months, the Vander Vennens have already discovered the truth in what other parents of children with heart conditions have told them: They will always be on the lookout for signs of decline in Aurora while at the same time delighting in her life and growth.
“You’re always going to wonder if something’s wrong, but I think so far, since we’ve been home, we just take it day by day—enjoy it,” Justin said.
“I just want to see her grow, and I think she will. I think she’s tough. I know she’s tough.”