Our sweet Weslie Mae Zych was born at 40 weeks and 5 days on April 19th, 2023, weighing 7 lb. 11oz. and measuring 19 in. long. Just hours after she was born, her lips were turning blue and her oxygen dropped to 74%. Doctors noticed that she was super tense and had a hard time relaxing her joints and muscles, which caused issues with learning to suck, swallow, and breathe, so a feeding tube was needed. She spent 4 days in the NICU at Advent before she was transferred to Children's Mercy for further testing. After being evaluated by cardiology, neurology, physical and occupational therapists, among many other specialists, they ran a full gene panel to get to the root cause of everything.
After 11 days in the NICU, Weslie got to come home. A month later we received a call from the Children's Mercy Genetics team. We found out that she had 2 genetic mutations that cause heart problems. One causes issues with the electrical functions of her heart and the other affects the heart muscle itself, and can cause restrictive cardiomyopathy, or heart failure. At this time there were only 9 other cases in the world with these gene mutations and she was the youngest ever diagnosed.
Soon after, Weslie was diagnosed Long QT Type 3 (LQT3). In Long QT Syndrome the heart's electrical system takes longer than usual to recharge between beats. It can cause fatal episodes of arrhythmias if not properly treated. They also discovered that her BNP level, the protein that indicates heart failure, measured over 13,000. Normal range is around 150. A heart catheter was ordered to measure the pressures and blood flow in her heart. At this point, doctors told us Weslie would likely be a candidate for a heart transplant.
June 8th, 2023 at 7 weeks old, doctors performed her heart cath and we received the best news a parent could hope for. All of the pressures in her heart were normal. Her blood flow looked great and she was not considered to be in heart failure at this time. We could feel this immediate weight of relief rush over us and cried the happiest tears.
We are so grateful for all the amazing doctors, nurses, and staff that have taken care of our girl from the time she was born. They essentially saved her life by being proactive and checking every box possible. An early diagnosis is always the best path for a successful treatment. Today, she sees a Cardiac Electrophysiologist and the Heart Failure Team at Children's Mercy every 6 months to keep a close eye on her.
Weslie will be on heart medications the rest of her life and there is a chance she will need a heart transplant later on. We share Weslie’s story in hopes that we can help other families and continue research for those like her. She has a high likelihood of passing this condition on to her children one day. We will continue to fight for her and celebrate every milestone. Today, she is a happy, thriving little girl who loves reading, snuggling, talking, and playing. We are so lucky to be her parents and have the opportunity to advocate for her and others through the American Heart Association!
