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My Baby Nearly Died

By Meg

Vincent was born on February 11, 1998 — 10 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. After an internal scan, she told us to take him immediately to Sick Kids Hospital with suspected biliary atresia (a rare disorder that results in the closure or disappearance of the bile system). 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 (a disorder that makes it impossible to break down lactose – a substance found in dairy products and breast milk).

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 seven 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 a newborn screening test for Galactosemia (a simple blood test taken from a small heel prick) could have saved us a lot of heartache and future uncertainty. We were very lucky that Vincent managed to hang on until his diagnosis.

Story written by Meg Bassman and reprinted with the permission of the Save Babies Through Screening Foundation of Canada http://www.savebabiescanada.org/.

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