Our precious newborn, Lottie was the cutest bundle of joy we could have ever imagined. At just weeks old, our pediatrician noticed a heart murmur at her routine visit. We had no idea until a visit to the Nemours Children’s Cardiac Center in Delaware that she had any cardiac issues whatsoever. After an echocardiogram, Lottie was diagnosed with Tetralogy of Fallot (TOF). Her diagnosis included TOF with valvar and subvalvar pulmonary stenosis, with large secundum ASD and additional posterior muscular VSD.
After we received Lottie’s diagnosis, we were very anxious, knowing our child could have “TET spells” a condition where she would have had lack of oxygen and blood to her organs, including her brain. Constant monitoring and always watching for any signs, knowing that her condition was inevitably going to worsen. As a nurse, I knew immediately she would need open heart surgery and I felt like my whole world came crashing down. I couldn’t believe my baby would have to endure this, and I felt so helpless.
Lottie underwent open heart surgery in January 2023 by Dr. Christian Pizarro. She had three holes in her heart repaired, as well as the pathway between her heart and lung artery opened, her VSD repaired, as well as an additional large ASD repaired and a posterior muscular VSD repaired. She also had pulmonary valve valvotomy. Ten days later, she had to undergo another minor procedure to put in two additional chest tubes and a pericardial drain to alleviate fluid buildup around her lungs and heart.
The entire CICU staff are incredible. Their knowledge and expertise are unprecedented. A special thanks to Dr. Christopher Derby and Carol Craig, RN for their amazing care during a stressful time. If it were not for the Nemours Children’s Cardiac team, Lottie could’ve had a very different outcome and we are so thankful.
Lottie is doing incredibly well. Since the repair was completed in the newborn period of her life, it is possible she will need interventions in the future if the pathway between the hear and lung artery do not grow. But as of right now, she is doing so good. Her smile and giggles are so precious to us.
Our plans for the future include continuing to homeschool our four children and soaking up as much time with them as we can. We have a positive outlook for the future and are being intentional about not taking our family’s health and children for granted.
For families going through a similar situation, give yourself grace. This is one of the hardest things you will ever have to face. The unknown is scary, but your child will prove to you that you can be strong by watching them be strong. God is right there with you— He will never leave your side. Lean in and trust even when you don’t understand, and it doesn’t make sense.
To learn more about Tetralogy of Fallot, visit KidsHealth.org.
