Kelly, born 2007At Kelly’s 2-month well child visit I expressed a concern about how labored her breathing seemed. Previously, we had been told that she was a belly breather and that it is normal. Being our third child, I wasn’t inclined to believe that it was normal. Much to our shock and terror, Kelly was sent via ambulance to DeVos Children’s Hospital directly from the doctor’s office because her sats were low, she had fluid in her lungs, and the pediatrician could hear a heart murmur.
The next morning an echocardiogram was performed and we were told that our daughter had multiple heart defects. Kelly was diagnosed with Ventricular Septal Defect (VSD), Coarctation of the Aorta (COA), Mitral Valve Stenosis (MS), and Aortic Valve Stenosis (AS). Kelly was six months old when she had her first heart surgery at C.S. Mott Children’s hospital. The surgery was performed by the amazing Dr. Edward Bove. He repaired the VSD, COA, and dilated the mitral valve. She was in the hospital for seven days, with four of them being in the intensive care unit.
After the surgery she was like a new child! She began to grow, her color improved, and she was happy! Kelly continued to do well until she was nearly four years old. At her yearly cardiology check-up the pressure behind her mitral valve were very high. A heart cath was done and open heart surgery was recommended for repairs to the mitral valve. In March 2012 Kelly had her second open heart surgery at C.S. Mott, again by Dr. Bove. It was believed that they could dilate the valve again without having to replace it. The surgery went well, recovery went as well as expected, and discharge studies were ordered. The discharge studies showed that Kelly’s mitral valve was actually worse than before the surgery and now it definitely needed to be replaced. Kelly was ordered to stay at the hospital until they could get her in for another surgery. Luckily, we didn’t have to wait long and she had another open heart surgery nine days after the previous one. This time the mitral valve was replaced with a mechanical valve.
The surgery and recovery went well. However, because Kelly now had a mechanical valve she had to be on blood thinners. It took a while for her blood to be at the right therapeutic thinness (sometimes I make up medical terms). Her total stay at C.S. Mott in 2012 was 20 days.
Today Kelly is doing well with her mechanical valve. She takes a blood thinning medication (Coumadin) every day which requires frequent monitoring. Sometimes it is a battle to keep the medication levels under control because it is sensitive to diet and antibiotics. Kelly’s mechanical valve will need to be replaced in the future, but for now she has an annual checkup with a pediatric cardiologist.
Story by Kelly’s mom, Kristen – Michigan
Tobias, born 2016