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Sydni's Story

written in April 2001

Sydni Connor Quinlan underwent her liver transplant at 10 weeks of age, just under 8 pounds. It was frightening. However, our terror happened in her first week of life, when the consequences of the metabollic error manifested itself. She had ammonia levels 13-20 times the acceptable level, and underwent dyalisis 5 times (in her first 10 days of life) to filter her blood. Unfortunately, it took 4 days for the doctors to diagnose her condition, and the raised ammonia levels destroyed much of her brain. When they removed Sydni's liver, it was in worse shape than they had thought, and did not have much longer until it would have failed. We were fortunate, and she was only on the donor list for 4 days--in fact, had she been put on the list 2 days sooner, she would have had another donor. We are very lucky that the parents of the child donor had the foresight and humanity to have their loss be a benefit to another child. We don't know them, but their child's gift will live with Sydni forever. Developmentally, Sydni is well behind. She is 28 months old, but has the brain of a 5 month old. One doctor has questioned whether Syd will ever be able to feed herself, much less be independent. That was the first time I'd heard a doctor say those words. Physically, she is small, barely at 20 pounds. But, she smiles, laughs and reacts to wind, sound and Disney animated movies. Her favorite (maybe it's ours) is Beauty and The Beast. She cracks up every time the Beast first meets Belle--He roars, Sydni laughs. Syd only takes 2 medications: Prograf as the immunosuppressant, and she takes Prilosec for indigestion. She went through spells of stomach disorders, and has been on Prilosec since the operation. Our post-operation experience was a roller coaster in the first year after the operation, Syd was in the hospital about 125 days. Every time she got a fever, she would be admitted and, but they were never successful at growing anything in their cultures. Also, she had problems eating, and an eating tube was imserted into her stomach, but it never healed, and she actually lost 3 pounds during the months in which it was in her. So, it was removed, and has healed up into what looks like a bullet wound. But, she eats better now. For a while, Judy (my wife) was constantly inserting, maintaining and replacing NG tubes so Syd would get nourishment. Sydni is a little charmer. She melts me daily with her smiles and laughs. We were told Sydni's situation was likely to strain our relationship, but Judy and I could not be closer. If I had a wish, it would be for Sydni's normalcy for her sake, not for ours.   Read the Cincinatti Enquirer's Coverage of Sydni's Translant