by Cathy Wilson
Our family is so excited about traveling to Washington, D.C. this summer to represent Le Bonheur Children’s Hospital at Family Advocacy Day. My husband, Robert, and I will be in D.C. with our daughters, Ann, 8, and Mary Quay, 5. Both of our daughters have been patients at Le Bonheur, and we feel so blessed to have an amazing children’s hospital like Le Bonheur in Memphis.
Our story with Le Bonheur began during Ann’s first year. Ann was diagnosed at birth with a soft cleft palate -- basically a hole in the roof of her mouth, which affected her ability to eat and would have affected her ability to speak if it was not repaired. After we knew Ann would need surgery, one of our first questions was whether we needed to leave Memphis for her care. Through conversations with friends and our pediatrician, we learned of the excellent care available at Le Bonheur and that there was no needfor us to travel. Ann had surgery to repair her cleft when she was 11.5 months old. While the cleft repair is a painful surgery, so much about Le Bonheur made it easier. From the toy she received before surgery to the play room on her floor, we came to appreciate being in a children’s hospital. After three days we took her home with an intact palate (and tubes for her ears), and she has not needed to return to Le Bonheur as a patient since she was discharged. However, we can see now that our experience with Ann’s surgery was in part God’s way of preparing us for the future.
A year and a half later, when we were pregnant with our second daughter, Mary Quay, we learned that she also would be born with a birth defect. She was diagnosed at our 20-week ultrasound with a neural tube defect, which was later confirmed to be spina bifida - basically, there was a hole near the bottom of her spine. They also told us that she had hydrocephalus and that if she survived, she would need surgery immediately after birth. The maternal fetal doctor who gave us the initial diagnosis gave us a very grim prognosis of Mary Quay’s health and potential and even suggested terminating the pregnancy. Although we were not sure what Mary Quay’s ultimate health would be like, subsequent appointments provided more hopeful news, and we began researching spina bifida and what treatment she would need. We again had to ask the question, "Do we need to leave Memphis to get the best care for our child?" Once again we were assured by our pediatrician and others that with the pediatric neurosurgeons at Le Bonheur, she would be well cared for, and there was no reason to leave.
Mary Quay was born at a local hospital and transferred to Le Bonheur the day she was born. She had a hole in the middle of her back that exposed her spinal cord. She had surgery to close her back when she was less than 48 hours old, and we spent the next two and a half weeks in the NICU and NICU stepdown units at Le Bonheur. During her stay she was seen by neurosurgery, orthopedics, urology, neonatology, plastic surgery, genetics, physical therapy and occupational therapy. During this more serious and extended stay, we really got a strong dose of what patient- and family-centered care is all about. We could stay with our daughter in her room, instead of just “visiting,” and the clinicians were very good about explaining to us what was happening, what we could expect, and helping guide us through the decisions that had to be made in our daughter’s care. From the moment my husband entered the NICU that first day there was a warm greeting from a Le Bonheur associate basically saying "Welcome to our house – you are going to be with us for a while, and we want you to know you are more than just a guest." This attitude was pervasive from the front desk to the nurses who rotated through each shift to the doctors who were on the floor. It was striking and helped give us peace at such a stressful time.
Today, Mary Quay is a happy and for the most part healthy 5-year-old. She loves playing with Ann and attending Pre-K in a typical classroom. She walks with the aid of forearm crutches and ankle braces. She is also catheterized several times a day and has a foley catheter overnight to help keep her bladder and kidneys healthy. Without the wonderful care she received at Le Bonheur, her story would be quite different. We are always thankful that Le Bonheur is in our own hometown and that the caring staff is waiting to care for either of our daughters whenever the need arises.
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