Our patients' stories: my baby’s congenital heart defect

February is National Heart Month. Over the new few weeks Thrive will be sharing stories about pediatric cardiology, its treatment at Children’s Hospital Boston and all the amazing clinicians, patients and their families that make Children’s Cardiovascular programs among the best in the world. In the following story, mother Robin Lee remembers how her daughter Lindsay battled a serious heart condition just a few hours after birth.

Lindsay had open-heart surgery as a week-old infant

Ten years ago I was pregnant with my third child. A month before my due date my husband Joe and I took a surprise trip to the hospital when my contractions started. Seeing as this was my third pregnancy, I thought I was an old pro. I figured we’d get to the hospital, a nurse would ask me a few questions and they’d monitor me for an hour or two and then send us on our way. No big deal. But as the clinicians studied my ultrasound, I knew from their intent looks and hushed tones that something was wrong. When they finally broke their unbearable silence, they told me my baby had stopped growing and that they were going to deliver her that night via C-section.

The operation went smoothly, and in no time I was happy and feeling good. They took my husband and I into a separate room while they ran some tests on our new daughter Lindsay. After a while I grew anxious to see her, so I sent Joe to see if he could sneak some pictures. He tried four times to get to the part of the hospital where they had taken her, but every time he got close someone said he couldn’t go in because the doctors were tending to a very sick baby and couldn’t be disturbed. Feeling hungry (and in no rush to come back to me empty-handed), Joe called and said he was going to hit the cafeteria while waiting out the emergency.

Lindsay cheers on marathon runners, raising money for Children's Hospital Boston
Just then two nurses came rushing into my room. From the look on their faces, I knew it was serious, and suddenly it hit me: The emergency people had been shooing Joe away from was our emergency; it was our baby all those doctors and nurses were trying to keep alive. They put a call out for Joe and he was at my side within seconds, the cafeteria tray still griped tightly in his hands. Once we were together, the nurses told us there was something wrong with Lindsay’s heart and she would need surgery very soon if she was going to survive.

In a few hours, the Transport Team from Children’s Hospital Boston arrived in an ambulance to take my little Lindsay away. She was just a few hours old and already being carried off for major surgery; I hadn’t even held her yet— barely had a chance to see her— and suddenly we were being separated, possibly forever. It was devastating. Tears filled my eyes as they whisked her away in a big incubator.

A heart with transposition of the great arteries. Click to enlarge.

En route to Children’s her health got so bad they had to balloon her heart to keep her alive. Once in Boston the doctors confirmed Lindsay had transposition of the great arteries, a congenital heart defect that occurs when the large vessels in the heart aren’t connected properly, preventing normal blood flow to the rest of the body. Joe got to Children’s shortly after the ambulance, and was quickly introduced to Lindsay’s surgeon, Dr. Forbess. He was very kind and assured Joe that this was a routine surgery in his world, but for us it seemed overwhelming. How could anyone, no matter how skilled, possibly fix all those tiny imperfections in such a small heart?

Lindsay today

Lindsay was scheduled to have her surgery the next week. The next seven days felt like an eternity, but as we waited for her to get well enough to undergo the procedure we got to tour Children’s Pediatric Intensive Care Unit (PICU). We met with great doctors and nurses and saw so many babies who had survived open-heart surgeries that we began to feel a little better. We were still scared to death of course, but the fact that we could relax during the worst time in our lives, even if it was just for a little bit, speaks volumes about what we saw at Children’s.

The following week, Lindsay’s surgical team took her from her room to the operating table. We watched in disbelief as they rolled her to the elevator, but just as the doors opened she cocked her little head to the left and opened her eyes wide as if to say, “Don’t worry, I’ll be fine.” It wasn’t a guarantee she’d be OK, but it was enough of sign for me to know she was a fighter.

And that fighter’s spirit paid off. Lindsay made it through the surgery with flying colors, but she didn’t do it alone. From the waiting room to the operating room, from her first week at the PICU to the 14 days she spent recovering on the Cardiology floor, everyone at Children’s who took care of Lindsay was amazing.

Thanks to Children's Hospital Boston Lindsay has a much brighter future.

It’s been almost a decade since Children’s saved our daughter, but the hospital is still a big part of our lives. Lindsay is still treated by a cardiac specialist at Children’s, Dr. David Fulton, and we donate time and money to the MIX Cares for Kids Radiothon, an annual fundraiser that benefits Children’s. As a big family we’ve got plenty of expenses, and as a busy mom of three I’m pretty strapped for time, but we still manage to do everything we can to raise money and awareness for the hospital that gave our family everything. Considering how traumatic her first few days were, we feel so lucky to have been able to watch Lindsay grow and thrive all these years and want to do what we can so other families can have that same shot at happiness. Like my husband says, you never truly know what goes on behind Children’s big revolving doors, until you HAVE to be on the other side of them. We’ve seen what’s it’s like firsthand, and are so thankful that one of the world’s best hospitals is right in our backyard.

For more great stories about cardiovascular conditions, treatment and survival, check out Children’s Facebook page dedicated to our heart center. For a PDF questionnaire on questions every expectant mom should ask of her ultrasound technician in regards to her unborn baby’s heart health,  click here.