January Heart Hero of the month ~ AMELIA
written by, Heart Mom Laurie
Amelia and her twin sister Eloise were born on August 18, 2016 exactly one minute apart. Aside from having twins, the pregnancy was easy and the girls were born healthy and were released from the hospital three days after being born. While Eloise grew like a typical baby, Amelia struggled with her growth for an unknown reason. In January 2017, both girls caught RSV. Amelia really struggled, but wasn’t hospitalized and got better after about two weeks. At a doctor’s appointment for her RSV, the pediatrician ordered an X-Ray of her lungs to make sure she didn’t have any lingering effects from the RSV. The X-Ray results showed that she had a bit of lingering pneumonia, but also showed that her heart was enlarged. We were then referred to Omaha Children’s Hospital’s Cardiology Department.
On February 28th, 2017 Amelia had her first echocardiogram. The echo showed that she had a Patent Ductus Arteriosus, which the doctor said was pretty common. We scheduled a Heart Catherization for March 15 to close her PDA. During the Cath, the nurse called and to let us know that they had found an underlying condition. Amelia’s right pulmonary artery was attached to her lung, but not to her heart. One of her lungs was not functioning very well and her other lung was taking 8 times the amount of blood that it should have been getting. Since this was unattached, she would have to have Open Heart Surgery. My husband Derick and I were terrified. We went from having a quick procedure to scheduling a major surgery for our baby and the doctor told us we were now part of Children’s Cardiology Family. On March 31, 2017, Dr. Hammel performed the operation to close her PDA, ASD, and reattach her artery. Her disconnected artery was caused by having a bilateral ductus arteriosus. When this closed at birth, it isolated her pulmonary artery. This is a very rare condition that the surgeon had only seen 6-8 times in his 12 years of handling surgery.
When Amelia was in the hospital, I started looking at CHD organizations and came across Heart Heroes.
I loved that she was able to get a cape and that awareness is brought to Congenital Heart Defects. Until I had a child with a CHD, I had no idea that they were so prevalent.
Her sisters are a little jealous of her cape. Each year we participate in the Super Hero Heart Run and activities through Heart Heroes. We love to see all of the special kids and honor the Heart Heroes and Heart Angels.
Today Amelia is a thriving three year old. We are extremely fortunate in that she will have no long-term effects and will be able to live an active life. She will continue to have to see Cardiologists for the rest of her life to make sure that her Pulmonary Artery stays attached and that she won’t need any more surgeries. We are so blessed and thankful to the doctors and nurses and that she is so healthy.