For the Millers of Silverdale, Wash., Valentine’s Day is extra special this year. For the first time in five years, their calendar is free of surgeries and hospital stays for siblings Tessa and Gabriel, who were both born with heart defects.
A complicated, changing diagnosis
The Millers’ complicated journey began in 2008, before Tessa was even born. Ariana and Chris learned that she had Down Syndrome and an atrioventricular septal defect (also known as an AV canal defect). The defect occurs when the heart doesn’t form properly before birth, leaving a hole in the middle of the upper and lower chambers.
Even while she was still pregnant, Ariana began seeing Seattle Children’s Heart Center team. Soon after Tessa’s birth, she met Terry Chun, MD, who has cared for Tessa since she was just a few days old.
“This family has been incredibly resilient,” Chun says. “Even before Tessa was born they’d gotten the news that she had heart disease, but then after she was born, it turned out that she had more complicated heart disease than was initially thought.”
Most babies with Tessa’s defect will need just one surgery when they’re between four and six months old. Instead, she has had five surgeries in less than four years – the first when she was just five months old.
Children’s surgeons had never seen anything like Tessa’s particular combination of heart problems.
In addition to the AV canal defect, Tessa has been treated for coarctation of the aorta, a collapsed lung, pleural effusion, and an arrhythmia – all complications that added complexity to her care. Ariana estimates that Tessa, now nearly five, has spent six months of her young life at Children’s. She’s also had three open-heart surgeries.
A second child, a second heart defect
When the Millers found out they were expecting a second child, they were elated, but also cautious.
“We’re going into this thinking, ok, here’s gonna be my healthy baby,” Ariana recalls. Just to be sure, she scheduled a fetal echocardiogram, which showed nothing out of the ordinary.
Gabriel was born on New Year’s Eve in 2010. When he was six weeks old, he contracted respiratory syncytial virus, a virus that can affect breathing. Doctors at a local hospital noticed a heart murmur.
“Nobody wanted to think that he would have a heart defect, because we’d been through so much with Tessa,” Ariana says, but an echocardiogram revealed that Gabriel had an atrial septal defect (ASD).
With no family history of heart disease, the Millers were stunned. “What are the odds? What are the possible odds that you would have two children and two heart defects like this?” Ariana says.
Gabriel was treated locally at first, but Ariana grew concerned when he didn’t gain weight or grow the way he should have. She decided to call Dr. Chun.
According to the American Heart Association, about 36,000 babies are born with heart defects in the United States each year – nine out of every 1,000 infants. Parents who have one baby with a heart defect are more likely to have a second child with a defect, though Chun says there’s not much commonality between Tessa and Gabriel’s conditions.
Where Tessa’s defect affected both the upper and lower chambers of the heart, Gabriel’s defect was a hole in the upper chamber of his heart. Typically, kids with his defect don’t need surgery until they’re old enough for preschool. But by the time he was a year old, Gabriel was starting to show signs of heart failure.
Meanwhile, Tessa was in need of a third open-heart surgery to finish the repairs to her heart.
“We knew that both of them needed surgery,” Chun says. “We had to figure out the timing of who needed surgery sooner – Tessa or her brother.”
Tessa’s AV canal defect was successfully repaired in July 2012, and Gabriel had his surgery in December, just before his second birthday.
A ‘completely new experience’
Chun and his team continue to monitor Tessa and Gabriel, but for now, the family is enjoying an unusual period of respite. Tessa’s heart is in great shape, and Chun hopes that “as she gets a bit older, she won’t be as much of a moving target as she was when she was younger.”
And Gabriel? “Immediately after going home following his surgery, he was a different child,” Chun says. “He was interested in eating, he was hungry, he was voracious, he was active – all of the things that he was never before.”
“I feel really lucky,” Ariana says. “I got trusted with two really amazing kids – heart defects or not.”
She’s grateful for the care and respect her family’s received at Children’s, especially from their “saint,” as they call him, Dr. Chun.
Chun says the feeling is mutual: “It’s incredibly rewarding to work with the same family for so long. Even though it’s hard to even imagine what the family is experiencing and how they’re processing all of the things that they’ve been through, it really feels like a journey that you’re going through together.”
3 tips for parents of kids with heart defects
- Make prenatal care a priority. “The world of prenatal care has become much more sophisticated over the last couple of decades,” Chun says. Prenatal screening can help identify heart problems in utero, and can help doctors develop a plan of care before the baby is even born.
- Trust your gut. Ariana encourages other families to be active members of their child’s care team and to speak up if something doesn’t seem right. Chun agrees that parents know their children best and may be the first to notice a new or changing symptom.
- Seek support. “It’s hard to not feel like their child has the rarest, most unusual thing in the world, because a lot of the diagnoses we give to families can be pretty scary and devastating,” Chun says. Connecting with other parents who are dealing with similar diagnoses can help families as they starting their journey.
- American Heart Association
- Congenital Heart Information Network
- The Children’s Heart Foundation
- “It’s My Heart” Online Book
To arrange an interview with the Millers or Dr. Chun, please contact Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.