Rebel Rita's Riders

On March 15, 2021 our lives were forever changed. During a routine 20-week anatomy ultrasound doctors saw that Rita had a cystic hygroma in her neck, her hands and feet were swollen and they could not get a clear enough picture of her heart, but there were some anomalies. We were immediately referred to The Wood Center for Fetal Diagnosis and Treatment at CHOP. After an amniocentesis, it was confirmed that Rita had Turner Syndrome and further ultrasounds confirmed that she had a severe hypoplastic aortic arch and small left sided structures of her heart. From that moment on, all prenatal appointments were at CHOP, delivery would be in the Special Delivery Unit at CHOP, and Rita would be immediately taken to the Cardiac Intensive Care Unit (CICU) at CHOP. We began to prepare as best we could for the journey that lay ahead for our miracle baby.

Rita is truly a miracle because it is estimated that 98% of Turner syndrome pregnancies end in miscarriage, many even before diagnosis. Rita has been fighting to live before she was even born! It is that rebel attitude that has gotten her through more than many adults can say they have overcome in a lifetime! Rita had a hybrid open heart surgery at 6 days old, a VAD (ventricular assist device) placed through open heart surgery at 6 months old, a tracheotomy at 7 months old, a heart transplant at 10 months old, was on ecmo for 5 days and dialysis for a month after her transplant, has had 8 cardiac caths, numerous MRIs and CT scans (head, abdominal, chest) and more ultrasounds, X-rays, IVs and blood draws than one could even imagine! 

The name Rita means pearl. And one of the definitions of pearl is a person of great rarity and worth. Her heart journey has not been "typical" and some of the many doctors and nurses have called her unique because she does things in her own way and in her own time. Rita has called CHOP home since she was born there 17 months ago, and most of her time there has been spent in the Cardiac Intensive Care Unit (CICU). Without the CICU team of doctors and nurses Rita would not be alive today! We are participating in the Spin-in to put a face to CHD and to raise money so the Cardiac Center and the amazing doctors, nurses and staff that make miracles happen there every day can continue in their fight to help babies like Rita live!