Belfast Telegraph

Watch: Northern Ireland baby who lived 15 days with rare condition becomes online inspiration

A Co Fermanagh baby born with a rare medical condition has proved an inspiration online after her parents documented her 15-day life.

Faith Isabella Wilson was born to parents Joanne and Phillip on January 8, 2019.

She was conceived during the couple's first IVF treatment, but during the pregnancy Faith was diagnosed with anencephaly, a condition that means part of the baby's brain, skull or scalp has not fully developed.

Most babies with anencephaly do not survive birth, but Joanne and Phillip decided to proceed with the pregnancy in the hope of spending as much time with their baby as possible.

Faith defied the odds to live for 15 days and her parents were even able to take her home with them, dubbing her their "little warrior princess".

Joanne and Phillip documented Faith's life in conjunction with support group Every Life Counts who support parents of children with fatal foetal abnormalities.

An online video posted by the group has attracted massive attention, gaining over 274,000 views on Youtube.

In the video Joanne explained how the couple were told of Faith's condition.

"We were called into the room for a normal scan of all the baby's organs, everything seemed to be okay, but the baby's head was very far down and they couldn't see so they asked us to go away to give the baby a chance to turn," she said.

"We went back after 30 minutes and the radiographer went over her heart again and said the baby has turned and went out to get a second opinion.

Joanne and Phillip Wilson with daughter Faith. Credit: Every Life Counts
Joanne and Phillip Wilson with daughter Faith. Credit: Every Life Counts

"She brought another radiographer into the room and she scanned very quickly, less than ten seconds. She told the other doctor 'I think you're correct, then turned to us and said 'we've got some bad news, the baby's got an incomplete skull and brain and it has anencephaly'."

Joanne revealed how the couple reacted to the news.

"It was a huge shock. We'd fell pregnant on our first treatment and we just thought everything was going to be normal and it just wasn't," she said.

"I was very angry before going in to speak with the consultant, I was just questioning what do I do, do I carry this baby? Do we terminate?

"I just went down to the bedroom and I prayed really hard and God just spoke to me and said 'no you have to, you have to carry this wee baby'.

"I'm so glad we did because she's here now.

"We were scared but we knew that we had to everything to carry this baby as far as possible for whatever time we were going to get with him/her was going to be extremely precious. We started building and creating loads of memories."

Faith arrived a week early and Joanne said that she had a calm birth.

"Phillip even slept through part of it," she joked.

"I didn't hear anything when she first came out and I thought that's it, he/she isn't here then we just heard that cry and it was just magical, you never want to hear babies crying but we were more than happy when she cried.

"Phillip just turned to me and cried and said that we had a baby girl.

"I just never thought we'd get to be mummy and daddy at home with her in this way, we've got to do so many nice things."

Phillip said that despite their sadness at the shortness of Faith's life she had touched so many people.

"She's been here 12 days and she's spoke to more people and done more good than I've ever done in 31 years and it's amazing," he said in the video.

"Not to say we got angry, but you often ask why? The Lord always has a reason, we might never know, some day we might find out, but just in the last few days, since Faith's been with us he has showed us why.

"You wouldn't change one thing, not from the very start would you turn back time and change one thing."

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