This past Monday, a central Iowa couple was able to bring their twin babies home for the first time. One baby, the boy, was born healthy, but his sister has a serious heart defect that kept her hospitalized for nearly four months. In January, at 18 weeks of pregnancy Brad Weitl and Christina DeShaw discovered that one of their twins had hypoplastic left heart syndrome, in which the left side of the heart is severely underdeveloped. This was Ava, her brother Aidan’s heart was fine. After the diagnosis, Christina got on the internet to gather information about what to do next. “You know doing the research was good because I understood what it was, but it was also scary because it’s a very serious defect. And in doing the research I knew we had to find her the best possible care and that was going to increase her chance for survival.”
She and Brad contacted Dr. Ben Eidem, a pediatric cardiologist at the Mayo Clinic. He explained that babies with this syndrome typically require a series of very complex heart surgeries. He says “some of these children may go for intervention before birth, you can do that in some centers in United States and try to make hypoplasitc left heart syndrome better before the children are born. That’s not an option when you have twins because you have one child with a normal heart and one with a congenital heart defect and that’s not a situation where would have referred Ava.”
After several consultations at a number of facilities, it was decided that Ava and Aidan would be delivered by C-section at Mayo. On May 8th, a large surgical team was assembled in adjoining rooms. They were led by pediatric cardiovascular surgeon Dr. Harold Burkhart.
“We had probably 30 or 40 people involved all taking care of mom and Ava. I’d say it was a very rare event, I would also say most children would not survive the procedure, so it worked out well.”
With Ava’s first heart surgery complete, a sometimes rocky journey began, chest tubes and monitors and medication. Christina says she and Brad often felt pulled in opposite directions
She says,”It’s kind of a blur and in other ways you focus on each milestone. With twins we have Aidan who’s healthy and we have Ava who’s our little heart warrior, you have to not compare them because they each have their own schedule.’
Brad says from the earliest days, Aidan has had a special connection with his sister, “Being a guy you’re probably insensitive but once I saw it, he’d go in there and he’d skootch over and get his head against hers or put his hand on her hand or on her face. It was really unbelievable I really didn’t believe it, but once I saw it, the twin bonding was there.”
Christina, Brad, Aidan and Ava spent their first night under the same roof in Clive on Labor Day. They’ll be heading back to Minnesota for the second surgery in a few weeks. Dr. Burkhart says he’s optimistic about Ava’s recovery, “things look good for the second operation, we’ll just have to see how it goes, but we’ve set her up for a successful outcome.”
In the meantime, Christina and Brad happily have their hands full with Ava’s 12 medications, diaper changes for both babies and of course 4 a.m. feedings.
If you’d like to follow Ava and Aidan’s progress check out Christina’s blogs.