Kaylee Litman shares her daughter’s story as part of her involvement with the 2025 Mid-Ohio Valley Heart Walk.
When I was pregnant, I found out that Klara was going to have heart issues when she was born. At that time, I was only aware of her having an extra hole in her heart (ASD). However, when she was born, I was only able to hold her for one hour before she was taken to the NICU to be monitored and get an echocardiogram completed. After the echocardiogram was completed, I got a call that Klara would need surgery very soon – at only six days old.
The nurses took her to the Cardiac ICU for further monitoring, testing and care. Klara’s aortic arch was too narrow (coarctation of the aorta) and needed extra support to keep it widened before surgery. The proper terminology would be “complete AV canal, hypoplastic aortic arch and PDA (patent ductus arteriosus).” I was not able to hold my sweet baby for four days.
Klara was taken to surgery around 6 a.m. Fortunately, I received a call from the nurse every hour to receive updates. During this procedure, the surgeon widened her arch and closed the ASD. After the surgery was completed, Klara’s chest remained open for two days. She came up with a breathing tube, chest tubes and an EEG. Klara had two small seizures post-surgery which were contained by seizure medication. Klara had the breathing tube removed and eventually was put on high flow oxygen.
The nurses and doctors noticed that she was struggling to keep up with her breathing. It was found that her valves were severely leaking, which was causing poor blood flow which, in turn, affected her breathing. So, Klara had to get the breathing tube put back in. The doctors told me that Klara would have to undergo a second surgery to fix her leaking valves – bilateral AV valvuloplasty. This surgery took place three weeks later and her chest was closed the next day.
After this surgery, Klara was doing much better with breathing on her own and was removed from all breathing support. Klara developed chylothorax so she had to immediately be switched to a fat-free formula diet for 4 to 8 weeks. She had a hard time learning to eat from a bottle again as she only had a few days in the beginning of her life to try it. Between her last surgery and her discharge date, her biggest struggle was feeding and gaining weight. Klara was discharged from WVU Medicine Children’s Hospital after a 72-day stint.
Once we arrived home, Klara was doing wonderfully! She started eating with her bottles with no issues. Her follow-up appointments were going great, and she was doing well with development. Unfortunately, nine months later Klara’s echocardiogram showed that she had a severe left ventricular outflow tract obstruction. She developed a discrete subaortic membrane, which caused severe subaortic stenosis. Her cardiologist and surgeon recommended that she get surgery very soon – making three open-heart surgeries in such a short time.
Klara got scheduled for a resection of a discrete subaortic membrane. Klara was brought up after surgery with her chest closed and no breathing tube, with only had a nasal cannula for minimal support. Our plan was to only be in the hospital for four days as Klara was doing great; however, the day before discharge an echocardiogram was completed which showed that her left atrium was inflamed and that there was fluid around her heart. She was taken to the cath lab to get a pericardial drain to remove the fluid. The drain was removed with minimal traces of fluid and Klara was discharged.
Since that last surgery, Klara has been better than ever! Her recent echocardiograms have looked great, and the cardiologist is slowly weaning her off medications as she grows. She is crawling around and moving around just fine! You would never know she would have gone through all of this. She is the strongest and happiest baby I have ever seen! I am so proud to be her mom.
We hope you’ll join us in helping the American Heart Association save more lives like Klara’s at the 2025 Mid-Ohio Valley Heart Walk! My family and I look forward to seeing you there!
