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Mary Benedict Steindorff
Jan 1, 2018 Latest post:
Oct 7, 2018
Bert and I appreciate you keeping up with Mary through this site. It is our intention to update it as Mary's condition changes. Mary was born on December 22, 2017 at 9:54 p.m. weighing 6 pounds, 5 ounces and measuring 18.5 inches. While her birth was normal (and miraculous!), she had a hard time keeping an acceptable oxygen saturation level, and it became clear within about an hour of her birth that something was wrong with Mary's lungs or her heart. She was admitted to Grandview's NICU for some tests and within a few hours, we learned that the problem lay with Mary's heart. The Grandview team alerted UAB, and by 7:30 a.m. on December 23, Mary was en route to UAB's RNICU for further testing. A cardiology team was waiting for her (both scary and awe-inspiring), an echocardiogram and ultrasound were performed, and by 10:30 a.m. we learned that Mary has multiple congenital heart defects, which will require several surgeries over the course of her life. She was transferred to Children's Hospital's cardiac ICU, which will be her home away from home for the next several weeks and at intervals throughout her childhood.
In a layperson's nutshell, Mary’s heart does not properly connect to her lungs, which affects her ability to obtain enough oxygen. Her heart is also missing 3 of its 4 chambers, which means it cannot efficiently supply blood to the lungs and the rest of her body. Surgical intervention is needed to establish good blood flow to the lungs to pick up oxygen and a good return path to the heart so the oxygen-rich blood can be distributed through the body. Surgeries (Glenn and Fontan procedures) will allow gravity and her blood pressure to circulate blood to her lungs where it can be oxygenated so her heart can just supply blood to the body without having to first send it to the lungs. Due to one of her conditions, she is also missing her spleen, which means she will need to be on antibiotics, likely for the rest of her life. She has already begun taking amoxicillin to ward off any potential infection, and we will need to be very careful to keep her from getting sick since something as simple as a cold could land her in the hospital.
On December 28, Mary underwent her first heart surgery. Dr. Bob Dabal, her cardiothoracic surgeon, placed artificial blood vessel between her pulmonary artery and aorta to improve blood flow to her lungs and tie off the temporary conduit that she has been using. The purpose of this surgery is to provide adequate blood flow to the lungs until she is old and strong enough for the next surgery, the Glenn procedure, which her team hopes can be pushed off until she is 6-9 months old.
There is much around the corner and over the arc of her lovely life we don't know, including the course of her surgical procedures and how Mary's heart will affect her daily life. What we know for sure, however, is that Bert and I are fortunate beyond measure to live in Birmingham and have Children's Hospital in our back yard, to have the unconditional love and support of our sweet family, and to have a Church family and friends who have cradled us with love beginning the moment we learned about all of this.
We ask your prayers for Mary--her progress has been measurable even in these first few days and your thoughts have provided her with tremendous strength already. We also ask for you to pray for her sisters, Margaret and Betsy, who cannot visit her and have been very distressed to be apart from their baby sister, and for her cardiac care team who have to make extremely hard decisions about her care in the coming months and years. Finally, we want you to know that every single message, call and card means so much to us--even when we cannot respond, please know that your thoughts have given us immeasurable encouragement and comfort. We have heard from so many of you who have loved ones with stories similar to Mary's and your generosity in sharing with us is a precious gift.
Thank you for your concern about Mary Benedict--she is a precious girl and a gift from God.