Shyla’s Story
Shyla’s Story
Shyla was born on June 30, 2008. Aside from being two weeks early, it was a normal pregnancy and birth. She had a slight case of jaundice when we were sent home, but was told this was pretty normal and that she would be reassessed at her two day check up. Once home, her condition quickly deteriorated, She started vomiting after her feedings and was losing weight. At her two day check up, she was still jaundiced, but we were told to hold her in the sunlight and keep an eye on it. For the next two days, feedings became more of a struggle and her jaundice did not seem to be getting any better. She would sleep the majority of the day. At 5 days old, Shyla went to sleep and we could not wake her up. We took her to the ER, and the doctors had no idea what was wrong. I was told to stop breastfeeding in an attempt to get her jaundice under control. In the meantime, she was given a spinal tap to check for infections, and an IV was put into her little arm to get her fluids.
Over the next two days, the doctors made guesses about what was wrong, and after talking to a specialist at another hospital, a diagnosis of galactosemia was given based on symptoms and blood work. However, apparently her newborn screening had been lost so another heel prick was rushed out for confirmation. Having never heard of galactosemia and not even sure how to spell it, my husband and I immediately Googled the word that would forever change our lives. Our first daughter, Kaya, was born in 2005, completely healthy. The whole idea of not having another healthy baby was excruciatingly overwhelming. The doctors told me that it was not a big deal, that her diet was the only thing that would be affected. However, after researching it on our own, we knew that was not the case. We did not feel comfortable where we were, and requested a transfer of hospital for our daughter. Shyla was moved to Lutheran General Hospital, and stayed in their wonderful care for two more days. The doctors and specialists explained everything to us, provided so much support and put Shyla on the road to recovery by simply changing her formula to soy. By the end of her first week of life, she had endured over 40 blood tests, urine tests and other various invasive tests, but she was a new baby on soy formula. She was awake, alert, crying, smiling, and most importantly, eating and gaining weight.
We were lucky to have heard about The Galactosemia Foundation (previously PGC) while Shyla was in the hospital, and we were able to attend their Chicago Conference that summer, when Shyla was only 3 weeks old. We have met a wonderful support group, and GAMA has become a second family to us. Today, Shyla has slight delays in speech and fine motor skills, but has met all of her other milestones on target. By all accounts, she is a normal, healthy, happy little girl. Her hobbies include “reading” food labels, playing soccer and annoying her older sister. We are fairly liberal with her diet now, after new research presented at the 2008 conference, excluding only dairy and legumes. Her favorite foods are bananas, peanut butter and jelly sandwiches, broccoli and Oreo Cookies.