On Monday morning at her check-up she was a little jaundice. On Tuesday it was worse. We went to the lab to test her bilirubin level. It was 28. Any # higher than 20 can cause deafness and brain damage. We were immediately admitted to the hospital. When her bilirubin level hadn't dropped after 12hours on the lights, we were rushed to the NICU like we were on fire (by 2 doctors and 4 nurses). Now we knew how serious this was.
After 3 more days of intense photo therapy her # had only dropped to 18. That afternoon the doctor came into our tiny room to tell us that her newborn screening results had come back and that Hannah has Galactosemia. He explained that it's a genetic disease. Hannah lacks an enzyme that breaks down galactose, which is milk sugars. Since her body can't metabolize it, it builds up as a toxin and affects her brain.
They listed the possible complications that accompany it, then left us alone with our worst fears and a box of soy formula. We were completely heartbroken. We went through each complication on the list and faced the possibility: learning delays- I'm a teacher, speech delays- we can get her speech therapy, cataracts- surgery, tremors- if it's serious I can homeschool her, ovarian failure- she can adopt...We met each complication with tears.
Once she was on soy formula her bilirubin # began dropping more quickly and after 10 days in the NICU we were discharged. (Her bilirubin was at a 9 the day we left).
We had an appointment 2 days later with a genetic and metabolic disease specialist, Dr. Amato. I assumed going into the office of a geneticist would be like going into the lab of Tony Stark. I was wrong. He gave us answers to our questions, though. More importantly, he gave us perspective: We can do this. She will be fine. She can have a normal life. This will become 'everyday'... and so far, it has.
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| Yellow baby (when her bilirubin was 28). |
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| Gray baby (after spending so much time in phototherapy). |
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