By Beata Mostafavi / U-M Health Lab
Fearless, spitfire and daredevil – just a few of the words that come to mind when parents Allison and Leanne Mertzman talk about 23-month-old daughter Rosemary.
“If she ended up being a stunt double, we wouldn’t be surprised,” Leanne laughs about youngest daughter “Rosie” who is known to jump, dance and “climb on everything.”
No one would guess that at 13 days old, the brown-eyed, daring toddler had open heart surgery for a complex congenital heart condition.
“You’d never know she’s a heart patient,” Allison says. “Luckily she doesn’t have many physical limitations because if she did, they would be hard to follow.”
But it’s been a long journey for the family, who in 2018 completely rearranged their lives to temporarily move across the country from their home in Los Angeles to Ann Arbor for Rosie’s heart surgery and treatment at Michigan Medicine C.S. Mott Children’s Hospital.
“We had to figure out some things like work and leaving our apartment in L.A. But as a parent you do what’s best for your child, not what’s most convenient for you,” Allison says. “
“Our priority was getting the best care possible. Out of all of the decisions we made, coming to Michigan for her surgery was one of the easiest ones.”
An unexpected diagnosis
Allison’s pregnancy was already treated as high risk because the Mertzmans’ oldest daughter, Ruthie, 4, was born premature at 36 weeks.
In 2016, Allison underwent in vitro fertilization to get pregnant with Ruthie at Michigan Medicine where she was born. Reciprocal IVF, using Leanne’s egg, led to a second pregnancy with Rosie.
At the 19-week ultrasound for their youngest daughter, they learned that something was wrong with the fetus’ heart. An echo showed that the baby had transposition of the great arteries (TGA), which essentially means the great arteries are reversed from their normal connections. Left untreated, babies with this condition cannot survive.
“I was in denial,” Allison says. “She didn’t feel any different. Her growth was fine. Her development was fine. She was moving around. She was totally healthy otherwise. It just felt surreal.”
The couple immediately went into research mode, learning everything they could about the heart condition and about the most experienced children’s hospitals offering the repair surgery.
“We were still very scared but once we had gotten past the initial shock and panic, we moved into preparing and planning as much as possible,” Leanne says.
Their research led them to the Congenital Heart Center at Mott, which was not only renowned for pediatric heart care but also close to family.
Allison, a travel agent specializing in Disney vacations, grew up in Michigan and Leanne, an attorney, attended the University of Michigan Law School. Allison’s father, Mark Pearlman, M.D., is an obstetrician-gynecologist at Michigan Medicine’s Von Voigtlander Women’s Hospital.
The couple visited Mott in December 2017 to meet with pediatric cardiology providers. They toured the hospital, including the Mott pediatric cardiothoracic intensive care unit where their baby would recover after surgery.
In February, 2018, a 30-week pregnant Allison and daughter Ruthie returned to Michigan to prepare for the delivery and surgery. But just a few days later, when Allison was just 32 weeks pregnant, she showed signs of early labor, requiring intervention by the maternal-fetal team and bedrest.
The interventions worked to stop labor, but Leanne still decided to join her wife and daughter in Michigan a few weeks earlier than planned.
On March 6, 2018, Rosie was born at six pounds, 10 ounces. And at almost two weeks old, she underwent open heart surgery with a team led by pediatric cardiac surgeon Jennifer Romano, M.D.
It would take several complicated steps to fix Rosie’s heart, among which was an arterial switch operation to move the reversed great arteries to their correct locations, reattach her tiny coronary arteries to the new aorta, and close the holes between Rosie’s heart chambers. This would allow the red and blue blood to follow the normal paths within her heart without mixing anymore.
“Hopefully this will be a complete repair that will last her a lifetime,” Romano says.
Today, the Mertzmans are back home in their apartment in L.A. where they enjoy spending time with local family members, playing at the park and most of all – Disney outings. The family documents some of their adventures on their YouTube channel.
“I think about her heart all of the time,” Leanne says. “I think about it every time I put her on my chest and see her breathing. But we treat her the same.”
Sisters Ruthie and Rosie love spending time together, often watching Disney movies, jumping in their bounce house, reading books and dressing up in their favorite costumes.
“Leanne and I both have sisters that we are very close with. We are so grateful that the two of them are creating such a special relationship,” Allison says. “Ruthie is a spectacular older sister who takes such great care of Rosie. She is so patient with her. And Rosie is so eager to play with her sister and hop on board for whatever games she has in store.
“They have such a wonderful special bond and we are so lucky we get to watch it.”
Rosie is now down from the six medications she came home with to none.
“When we saw our cardiologist here, she said ‘well, you need to thank your surgeon because she made an absolutely perfect heart. See you in a year,’” Allison says. We are so grateful to our entire team at Mott. While our situation was hard, it was the best experience we could’ve possibly had.
“She has really exceeded all expectations,” she adds of Rosie. “The whole point is getting them to live as full of a life as possible and that’s what I feel like the doctors at Mott did for us.”