Every Life Counts – Fatal Disability Diagnosis Testimonies

Home / Every Life Counts – Fatal Disability Diagnosis Testimonies

THERE ARE SEVERAL CONDITIONS WHICH, IF DIAGNOSED DURING PREGNANCY, CAN MEAN THAT A BABY MAY NOT LIVE FOR LONG AFTER BIRTH, OR THAT HE OR SHE MIGHT NOT MAKE IT TO BIRTH AT ALL.

These diagnoses are rare but they can arise in about 1% of pregnancies. What many parents are not told, however, is that while their children will have a short life, the time they have with them can be hugely joyful and rewarding.

In the section below we look at the stories of parents who have had children with each of these conditions. Many of these stories are from the excellent website, Every Life Counts, which has more testimonies from parents. Click here to visit the Every Life Counts website.

John Paul – Ours for a time

John Paul Johnson lived for seventeen minutes after birth, surrounded by his family and those who loved him. He was theirs for a time: and every moment of his life in the womb and after birth was celebrated by his family. His mother, Clíona, talks about those precious moments with John Paul, and the love he brought to everyone.

Mo Leanbh (my baby)

Fiona was told her baby boy, Andrew, had anencephaly. He lived for 27 hours after birth.

Wishes for LillyAnn

Aileen gives a moving account of her daughter Lilly Ann’s young and precious life.

I was told that she wouldn’t live after birth, she did for 6 days. But they really drum into you that she will not live after birth. I even went to a doctor that told me that she would be stillborn probably. When you’re told you’re going to get nothing, to get 6 days is just a miracle. She kicked a lot more than Kate, every night I would lie in the bed and say ‘Goodnight Kate, Goodnight Lillyann’ because I knew which side they were on, but she would kick an awful lot more than Kate.”

Simeon’s Story

This is a two part story about a family whose world was turned upside down when their unborn baby was diagnosed with Hypoplastic Left Heart Syndrome. They were told the baby may die within three days of birth and were given two options.

99 Balloons

Eliot was born with an undeveloped lung, a heart with a hole in it and DNA that placed faulty information into each and every cell of his body. However, that could not stop the living God from proclaiming Himself through this boy who never uttered a word.

Check out www.ninetynineballoons.com for more information about Eliot.

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