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After Giving Birth Prematurely, She Discovers Her Baby Needs Surgery To Live. But Doctors Refuse To Operate.

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annie steven premature baby genetic disorder 1

When little Annie Steven and her twin brother, Henry, were born around a month before the expected due date, doctors discovered that she only weighed half of what her brother was, prompting doctors to posit that Annie may have had a rare genetic development disorder, according to The Sun.

A heart surgery could have saved the life of the premature baby. Unfortunately, Annie was a little too small to be operated. Her parents and the doctors had no choice but to let time run its course and hope for the best. Annie was discovered to have two holes in her heart.

Little Annie went through three blood transfusions. Kirsty Coles, Annie’s mom, was heartbroken when her own baby sailed away to “forever sleep” while she was cradling her.

Kirsty, who’s 37 years old, said, “I think she had just got tired of fighting. Me and Tom were with her at the end just as we were when she came into the world. All of Annie’s tubes and lines were removed, I held her close on my chest and Tom held us both. I hummed the song, Lazy Bones, to her – something I did every time she came out of the incubator for a cuddle.

“I wanted to make sure that Annie knew it was me and she was loved so very much and she was safe in my arms. We had around five minutes with her before she drifted off to her forever sleep. It was a very special moment for us.”

Doctors concluded that Annie had Smith-Lemli-Opitz Syndrome (SLOS), a rare genetic development disorder which affects many parts of the body, according to The Sun.

Annie eventually caught an infection and died. The money that the family gathered from donations will be given to another premature baby in the neonatal intensive care unit.

Kirsty said, “We have been fundraising for Annie but we are going to continue into the new year. We will initially be raising money for the Tiny Lives campaign to buy much needed equipment for the ward Annie was in.

“We will then continue fundraising for those who find themselves in a similar situation to myself and Tom and want to help them as everyone has helped us.

“It’s important to us that we thank everyone that helped Annie; doctors, nurses, medical staff at the hospital as well as all of the friends, family and complete strangers who have donated to Annie’s fund, given blood and sent messages of support.”

Kirsty and her partner, Tom Steven, will hold fundraising campaigns under Annie’s name.

source : The Sun/Kirsty Coles

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