Janice's Story

Tanya - posted on 02/24/2010 ( 1 mom has responded )

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The whole pregnancy I was told nothing was wrong then on September 15th 2009 I gave birth to a baby girl. The doctors like the word "unique" when it comes to her case. She has spina bifida, missing 6 ribs, a horseshoe kindey, and her legs didn't form properly, and they diagnosed her with the syndrome of caudle regression syndrom.

I am a 25 year old type 1 diabetic and although it was in the best control through the whole pregnancy I find myself blaming myself for it. Janice is now 5 months and seems to be doing well but I still feel guilty everytime I look at her legs or see someone doing something I know she will never be able to experience.

Currently we have a clinic appointment at the BC children's hospital in Vancouver. I have contact people in Variety Club and have her medical being covered by the "At Home" program. I just feel very alone but I have gotten a few responses in other groups that seem to be helping.

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Dawn - posted on 04/30/2010

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My son, Jonah, is 15. He was born with Spina Bifida. His hips are dislocated, he had club foot, hydrocephalus and is paralyzed below the knees. The one thing that helped me was going to the library and reading everything I could about Jonah's diagnosis. Knowledge is power. Don't leave your child's care just to the specialists, educate yourself so that you can contribute as well. This is a genetic disorder so there is absolutely nothing you could have done and it is pointless to blame yourself. Your daughter will learn through your strength.

I have always made sure my son understands that anything he wants to do, I will make it happen. Sure it's not the same as everybody else, but the pride you feel when your child overcomes an obstacle is indescribable. Jonah skis, rides motorcycles, plays sports and this year he will start driving. We are truly blessed to have someone show us everyday how delicate life is.

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