Kestly and Alden: My pregnancy journey with adult congenital heart disease

December 4, 2019

In the fall of 1994, Kestly Tinklepaugh underwent her first heart surgery at Texas Children’s Heart Center. Her next heart surgery was an open heart preformed almost 2 years later. Throughout her life, she was seen by pediatric cardiologists and adult congenital heart disease (ACHD) cardiologists. Twenty-three years after her first heart surgery, she delivered her very own son, Alden, while still receiving treatment for her congenital heart defects. Here's a snippet of her journey from pediatric patient, to adult patient to mom all under the same roof at Texas Children's. 

What was it like to grow up with a chronic disease?

My twin, Karly, and I were born with Tetralogy of Fallot, a complex congenital heart condition that involves four defects in the heart’s structure. We had BT shunts put in at 1 month old and our full repairs at 2 years old. Life continued to be pretty normal for us until we turned 16 and found out we needed surgery to replace our pulmonary valves. From there, it was yearly follow-ups to check our hearts and I would say we led pretty normal lives once again.

When did you transition to the ACHD clinic?

It was actually very easy. At about 18 years old, we transferred from the pediatric side of the hospital to the adult clinic. It was seamless and I am glad we were able to do all of that in house and continue to receive care at Texas Children's.

Were you worried about being pregnant while living with a chronic heart condition? 

I became pregnant at 23 and, because it was not planned, I had not undergone any testing before that, but I also did not have time to be worried. I did know my doctors would be OK with me having a baby. They have always said good things about my health in general, so I was not scared about that part.

What did you have to do differently as a pregnant ACHD patient?

I called my cardiologist to let her know I was pregnant, I continued to see Dr. Angeline Opina, an adult congenital heart disease specialist, and, at 16 weeks pregnant, I started seeing Dr. Manisha Gandhi, a maternal-fetal medicine specialist. I had the same amount of checkups and non-high risk woman would have just with a lot more attention to detail on my part.

Dr. Gandhi followed up with me through the entirety of my pregnancy and I had an echocardiogram at each trimester to make sure my heart was OK. Toward the end, she cleared me for vaginal delivery since I was low risk from a cardiac standpoint. That was it! Nothing was complicated at all. I did not think they were going to allow me to push, but it turned out I was OK to do so.

I was exactly 40 weeks and 2 days when Alden was born after about 36 hours of labor. Dr. Christina Davidson, another maternal-fetal medicine expert at the Pavilion for Women, delivered him. Alden is now 10-months-old and is doing just fine. He had his heart scanned, an echo and all of the tests were clear. Alden is a perfectly healthy boy, probably too healthy because he keeps me exhausted all the time – which is an amazing thing!

When it comes down to delivering a baby while living with a heart defect what were you anxious about?

To be honest, my whole pregnancy went perfectly. The main thing I was anxious about was the delivery itself. Even though my doctors said I could do it, I was still very anxious about it. I experienced palpitations during my pregnancy -- especially when I had my Braxton Hicks contractions, so I was anxious about what might happen when I had real contractions. I thought my heart would go crazy when I had a real contraction, but it did not and there were people who monitored my heart throughout delivery. I also worried about regular OB things like preeclampsia, but I am a part of a Facebook community called "Zipper Sisters," a group for women with congenital heart defects, where some of the moms reassured me that people with heart defects can have safe deliveries. 

All in all, I am very grateful to my care team (pediatric heart specialists, adult congenital heart specialists, MFMs) at Texas Children's for the full spectrum of care they provide and that I received here since birth and now as a mother myself. My baby boy is now a patient at Texas Children's Pediatrics and I feel as if I have come full circle.

Photos courtesy of patient family 

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Kestly Tinklepaugh