You may remember Renee Peerless from the ABC documentary Boston Med, which aired last summer and featured several Children’s families and clinicians. After Renee’s unborn son, Sam, was prenatally diagnosed with a congenital heart defect known as hypoplastic left heart syndrome (HLHS), an ABC camera crew followed Renee constantly, highlighting the care required to help a baby born with a heart defect survive the delicate first few days of life. In the following post Renee relives the experience and talks about how the fetal diagnosis of Sam’s condition made an extremely trying situation easier to deal with.
For Renee Peerless, the decision to have genetic testing done during a routine ultrasound had more to do with her husband Jake than her unborn child. Jake, a solider stationed in Iraq, was overseas for most of Renee’s pregnancy, so she initially saw the testing as a chance to have more images to share with him. “Jake felt like he was missing a lot so I wanted more pictures of Sam to send him,” she says. “I knew testing was a good precautionary measure, but my real motivation was getting a few extra ultrasound pictures.”
But as it turned out, the tests revealed that there was something seriously wrong with Sam’s heart. In a matter of minutes Renee went from giddy anticipation to the terror of learning that her unborn son’s health was in serious jeopardy. “It was like my whole world was falling apart,” she says.
The next week Renee met with a pediatric cardiologist in her home state of Connecticut and was told that Sam had a congenital heart defect called hypoplastic left heart syndrome (HLHS), where the left side of the heart is underdeveloped, limiting its ability to pump blood.
“It was so much to take in all at once,” she says. “I didn’t even know what a congenital heart defect was and all of the sudden it was all I could think about.”
After the shock wore off Renee realized she needed to be better informed about HLHS if she was going to get the best care for her baby. She spent the next three days researching the condition and its treatment, and was repeatedly directed to Children’s Fetal Cardiology Program. When it came time to pick a hospital to treat Sam, Renee felt the choice was clear. “Anywhere other than Children’s was not an option,” she says.
As her due date grew closer, Renee met with the Children’s doctors who would eventually become a big part of her family’s lives. She quickly formed a strong bond with former Children’s surgeon Emile Bacha, MD and Rahul Rathod, MD, the pediatric cardiologist who would follow Sam throughout his treatment.
“I knew immediately that I wanted Dr. Rathod to be one of my doctors because he was so down to earth,” she says. “At our first meeting he told me, ‘I don’t need to be the smartest person in the room, I just need to know who is so I can go to them for the answers we need.’ That straight-forward attitude was so refreshing, I knew he was the right doctor for me and my baby.”
Renee and her doctors weighed their options and decided that after Sam was born he would have a series of open-heart surgeries during his first few years of life. The idea of her child undergoing so many procedures at such a young age was emotionally draining, but Renee says Children’s staff kept her informed every step of the way, which made the process less intimidating.
At 39 weeks gestation Sam was born at Brigham and Women’s Hospital, just three days after Jake came home on leave to be by Renee’s side. After birth Sam was rushed to Children’s where a medical and surgical team was waiting. In the week that followed, Sam had two successful open-heart surgeries and near constant monitoring.
Obviously, having a baby born with a congenital heart defect presented challenges for a young couple separated by thousands of miles, but Renee says identifying Sam’s heart condition in-utero made the process easier to deal with. “I can’t imagine what it would be like to think everything was fine, only to be blindsided with the news that your newborn baby has a serious heart condition,” she says. “At least when it’s discovered during pregnancy you’re given time to process the information and prepare as much as possible.”
Sam is scheduled for his third open-heart surgery in April, just days before his second birthday. Naturally this creates some anxiety for Jake and Renee, but they’re optimistic about Sam’s continued success. “He’s doing so well lately that we almost forget that he’s going back to Children’s,” she says. “Assuming everything goes as well as planned, this will be his last open-heart surgery. That would be the best birthday present ever.”
Watch the Boston Med episode devoted to the Peerless family.