A Heart Like Mine was formed after our daughter, Annabelle was born with a congenital heart defect called Hypoplastic Left Heart Syndrome; HLHS. We had prenatal care, but our obstetrician missed the diagnosis during Annabelle's anatomy scan. Three days after she was born, her little body crashed. A hectic emergency room visit, open heart surgery at ten days old, and 87 days at Arkansas Children's Hospital. We would return three short months later for her second open heart surgery; The Glenn.
Annabelle just had her 3rd open heart surgery the Fontan in September of 2021 and spent 64 days inpatient recovering at Arkansas Children's Hospital. She has since sought ought extra help for care at Texas Children's; just recently (Jan 2022) having a Cath procedure completed there by their top doctors in hopes of helping persistent pleural effusion post Fontan operation.
2023 is almost coming to a close. Annabelle just had her first Fontan Clinic/Single Ventricle Day at Arkansas Children's Hospital. During the visit, many different test and labs were done. We visited with neurology, cardiology, pulmonology, and hepatology. We will return before end of year for more in depth look at her liver & how it's been impacted by her circulation and medicine regimen.
What is HLHS?
Hypoplastic Left Heart Syndrome is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. HLHS is one type of congenital heart defect. Congenital means present at birth.
What is a CHD?
A Congenital Heart Defect present at birth. It is one of the most common types of birth defects. Fewer than 200,000 cases per year. Every 1/100 babies born.
Are CHD lifelong?
Some congenital heart defects are able to be completely repaired with surgery; some are not total repairs. HLHS is NOT a complete repair and will require lifelong care by medical professional.
What is survival rate of HLHS?
There are currently estimates of three-five year survival rates of 70% of infants who have had the stage 1 repair. For children who survive to age 12 months, long term survival is about 90%. The size and function of the right ventricle are important in determining the child's outcome after surgery.
CHD and Heart Transplant
Many children and adults with a CHD will at some point in their life require a heart transplant if the function with their heart diminishes. This is routinely checked at cardiology appointments by having an echo-cardiogram or under anesthesia in the Cath lab.
What is Echocardiogram?
An echocardiogram uses sound waves to produce images of your heart. This very common test allows doctors to see your heart beating and pumping blood. Your doctor can use these images to identify heart disease.
What is a Cath Lab?
The Cath lab is an examination room in a hospital or clinic with diagnostic imaging equipment used to visualize the arteries of the heart and chambers of the heart. Doctors are able to treat any stenosis(narrowing) or abnormalities found.