| Vincent was born on February 11th, 1998, ten days earlier
than expected. At first, everything seemed okay, but by the next day
the doctors thought he had an infection and started him on antibiotics.
He didn't improve, so they began using more powerful medication that
had to be injected into his leg at regular intervals, causing him
to scream with pain.
A week later, they released him. At home, he was nursing poorly, and
sleeping irregularly. When Vincent was two weeks old, he was obviously
failing to thrive. I was sent to lactation consultants, who said he
was a lazy nurser. I was taught how to force the milk down his throat
by finger feeding. At 23 days old, now down to 6lbs from his birth
weight of 7lbs, and visibly wasting away, Vincent was referred to
a pediatrician.
At first, she thought he had a liver problem, and after an internal
scan, told us to take him immediately to Sick Kids with suspected
biliary atresia. We were told that a liver transplant could probably
save his life.
A few hours later, with time rapidly running out for Vincent, we had
the diagnosis of Galactosemia. I stopped nursing immediately and permanently,
and Vincent was put on soy formula. A few days later, he began to
come back to us.
When he was 7 weeks old, he developed lumps in his neck and was readmitted
to Sick Kids. After 10 more days in hospital and surgery to remove
the lumps, we were finally sent home. We suspect that the antibiotics
he was given shortly after birth might have caused this problem.
Vincent was diagnosed with ADHD earlier this year, after struggling
through his first two years of school. He is now on medication and
seems to be doing better. He is a bright, loving boy, and I can't
bear to think that we almost lost him.
He will always have to be careful what he eats, but we hope that in
other ways his life will be just as rewarding as anyone else's.
It should be obvious from this story that newborn screening for Galactosemia
could have saved us a lot of heartache and future uncertainty. We
were very lucky that Vincent managed to hang on until his diagnosis.
Sincerely,
Al & Meg Bassman |
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