A Question of the Heart: Congenital Heart Defect Complications Endanger Life of Unborn Baby
By Cari McCoy, mom to Channing Joy
Physicians will tell you that the normal fetal heart rate, after about the ninth or tenth week of pregnancy, should average around 120 to 180 beats per minute (bpm). Of course, just like an adult heart, this can vary during periods of sleep or movement. But at 17 weeks, my daughter’s heart was racing at around 250 bpm. It was as if she was running a race – with no stopping.
The day after my husband’s birthday, we had gone to our obstetrician to find out the gender. In addition, we found what’s known as supraventricular tachycardia (or SVT), a congenital heart defect in which the heart muscles are working overtime and, often, uncontrollably. It was the worst day of my life. What was supposed to be a happy day turned to fright and fear. We were referred to a perinatologist with an appointment that afternoon. Time, it turned out, was critical.
I killed the hours until the appointment by scouring online for information, but all I got was more fear: stories of hydrops fetalis (dangerous excess fluid buildup) and failed organs. The perinatologist didn’t offer much comfort. He confirmed our baby’s heart rate was obscenely fast. The only solace he could offer was that we opted for the extra ultrasound to find out the gender three weeks early. If we hadn’t, there was no guarantee we’d have heard a heartbeat at all by 20 weeks.
The fetal cardiology team takes action
We were stunned and desperate for answers. He sent us straight to Children’s Hospital Colorado’s fetal cardiology unit, where we met fetal heart coordinator Carey Rafferty. She immediately arranged an echocardiogram (ECHO) to review the baby’s heart structure. After a few minutes (that felt like decades), we met Dr. Lisa Howley and Dr. Bettina Cuneo, fetal cardiologists with the Colorado Institute for Maternal and Fetal Health – which combines the maternal know-how of Children’s Colorado and the University of Colorado Hospital. Dr. Cuneo held my hand as Dr. Howley explained the diagnosis. She drew a diagram depicting the heart and how it was affected by SVT. After the terrifying online descriptions and harsh words of the perinatologist, their simple and relatable explanation was a relief.
I began to understand that this was treatable. And they wanted to start right away.
I was admitted to the adjacent University of Colorado Hospital, and Dr. Howley visited me that evening. For the eight longest days of my life we tested and waited to see how my baby would react to different drug combinations. At only 17 weeks and too tiny for a heart rate monitor, my baby’s heart was checked by nurses via Doppler monitoring every two hours — with at least two ECHOs a day. Because my husband ran his business and took on full-time care of our 2-year-old daughter, I spent much of those eight days alone and in fear. But not always alone. Dr. Howley or Dr. Cuneo saw me every day to review the ECHOs and Dopplers and make adjustments to the medications. Still, it eventually became too much.
One day after my husband and daughter left, I was overcome with an inconsolable feeling of loneliness and helplessness. When Dr. Howley saw me she knew something was wrong. She inquired sweetly but persistently until I broke down and told her of my feelings of desperation and frustration. She hugged me while I sobbed uncontrollably on her shoulder. That small act of empathy made me trust her, mother to mother, rather than just doctor to patient. That gesture helped me form a bond with the hospital, Dr. Howley specifically, that allowed me brief moments of solace.
On the eighth day, the baby was stable enough that the doctors agreed to release me under the condition I purchase an at-home Doppler and return in two days for a follow up appointment. I was only four months pregnant, which left many months to worry as we tried different drug therapies in different combinations. Medicines would work before starting to fail. There was a point at around six months when the baby was nearly always at an elevated heart rate and I was driving to Children’s Hospital every day for ECHOs. But the heart team was always there for me: They high-fived me on days when the baby looked good and hugged me tightly on the bad days. They reassured me they would do everything they could to keep the baby healthy.
Months passed and my belly grew. The drugs and monitoring were paying off. One day (at around 24 weeks), my daughter’s heart rate was 180 bpm and never accelerated. Gradually, her heart rate fell well within a normal range. At this point, I was nearly eight months pregnant. Once born, a maternal fetal medicine team would monitor my baby as the medications left her system. Then, a few scenarios could play out. Option 1: She would go into SVT and need to stay in the hospital until stabile. Option 2: She would seem fine but go into fast heart rates periodically. Option 3: She would be perfectly fine and released after 72 hours.
We would have to wait and see what happened; it was entirely up to baby.
Our bundle of ‘Joy’
The day finally came. Channing Joy was born quickly, naturally and beautifully on October 24, 2014, at Children’s Colorado, with a team ready should any heart issues begin. Dr. Howley and Carey both marveled with me at the perfect little thing that had given us so much heartache. She was admitted to the cardiac neonatal intensive care unit for monitoring. We watched and waited. Tests revealed nothing out of the ordinary. Three days passed with her heart rate normal. It was the end, and the time for a beautiful beginning. After five months of ECHOs, EKGs, multiple medications, two hospital stays, and countless sleepless nights, the never-ending commitment of the fetal cardiology staff allowed my baby girl to be sent home with no medications -- and a fully functioning heart.
Today, Channing Joy is over eight months old and has had no evidence of SVT. I am thankful every day for the fetal heart team for their passionate commitment. As a parent, the most terrifying thing you can hear is that your baby could be sick or in pain. What you read online is even more frightening. Through constant worry, vigil and barely any sleep, we emerged on the other side of this condition safe and healthy. And, we even came out of this with some new friends. Dr. Howley and fetal cardiology coordinator Carey Rafferty both attended my baby shower.
From the staff at the front desk to the sonographers, from the EKG techs to the cardiologists, we were known, loved and cared for by the Children’s Hospital team and the team at the Colorado Institute for Maternal and Fetal Health. My heart goes out to them – and I know my daughter's perfect little heart does, too.