Hello! They say things change overnight, and we learned firsthand just how true that is. Our daughter, Olivia, was a perfectly normal 8-year-old on the evening of March 15th, 2022. That changed the very next day when overnight, she became a Riley Hospital kid. It started out with a bruit in her abdomen, which was discovered by her pediatrician. We were then recommended for further testing. After ultrasounds, EKGs, ECGs, CT scans, and many doctor visits, we had a diagnosis. We learned Olivia has a very rare condition called Mid-Aortic Syndrome. Mid-Aortic Syndrome causes a severe narrowing(stenosis) of her aorta, which has affected her kidneys, causing renal hypertension. Olivia spent four days, including Easter, at Riley Hospital to manage her high blood pressure. She is currently taking medication three times a day to help control her high blood pressure.
However, surgery is necessary to repair her Aorta. Due to this illness being rare in nature, we are traveling to Boston Children’s Hospital for care. Recently we met with surgeons at Boston Children's hospital and learned what it will take to heal Olivia. Olivia will receive a double kidney transplant. The surgeons will use her own kidneys to perform the transplants. The surgeons will move(transplant) her kidneys from where they are now and move them below the stenosis. The surgeons will then bypass the stenosis in her aorta with a graft from another artery. Olivia will spend 10-15 days at Boston Children’s Hospital to recover. We will have to stay in the Boston area for several more weeks for recovery and follow up visits.
We are so thankful you have taken time out of your day to read about our
family, and we thank you in advance for all your prayers and contributions.