When most people meet Maeve they see a fun loving, beautiful and very active 3 ½ yearold little girl. Except for family and friends, what most do not know is that she was bornwith DiGeorge Syndrome. DiGeorge Syndrome is a chromosome defect which has many medical issues, congenital heart defects being one of them.
Maeve’s congenital heart defect is Pulmonary Atresia. This means Maeve was born
without a pulmonary artery and pulmonary valve to take blood from her heart to her
lungs. Instead Maeve was born with multiple collateral arteries, known as MAPCAS,
which emerged from her aorta and supplied the lungs with limited circulation. She also had a ventricular septal defect (a hole between her two ventricles) and an atrial septal defect (a hole between her atria).
Maeve has undergone four cardiac catheterizations and four heart surgeries performed at Hope Children’s Hospital in Oak Lawn, IL. At 4 months and 9 months of age, the first two surgeries performed were the right and left unifocalization. During these surgeries the MAPCAS were brought together forming single right and left branch pulmonary arteries. At 2 and 2 ½ years of age Maeve had open heart surgery. During her first open heart they installed a pulmonary valve and pulmonary artery. In her second open heart they repaired her septal defects. What doctors used to create both the pulmonary valve and pulmonary artery will not grow with Maeve, therefore, as she gets older and bigger she will require further operations throughout her lifetime.
We sometimes wonder how Maeve would have fared if she were born 25 years ago. The surgical techniques and medical procedures available today were likely not available then. These advancements were only made possible by the medical research and development enabled by not just government funding, but by charitable donations from generous people across our country. That is one reason why we believe so much in the efforts of the Children’s Heart Foundation.
Although Maeve has endured so much and still has a long road ahead of her, we have been truly blessed with how well she has done through all of this. She is a daughter, sister, granddaughter niece and friend who is loved by all. We pray and hope that she will continue to do well so she will have a long, happy, and healthy life. All Children who have to endure difficult health problems have become true inspirations to us. We are especially inspired by our beautiful, strong little girl Maeve Kathryn.
Written by Maeve’s proud Mom Sandy