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Diagnosed to have 1% chance of survival, baby now eleven weeks old and thriving

by | May 14, 2014

 

By Dave Andrusko

Natalie Brown and her baby, Elsie

Natalie Brown and her baby, Elsie

The British publication, the Daily Mail, has a knack for finding and publishing the most incredible stories of parents who ignore advice to abort or whose unborn babies, said to be terminal, are born healthy.

The latest appeared yesterday in a great story written by Kelly Strange.

Natalie Brown, 32, and Peter Gordon, 42, had been told a rare terminal condition meant their daughter, Elsie, had a 1% chance of survival. Instead she was born healthy, likely suffering from a very different (and far less serious) malady.

As is so often the case, the drama began at the 20-week ultrasound scan.

‘Scans revealed she had club feet and her knees and hips were fixed in a contracted position, a bit like a kneeling Buddha,” Brown told Strange. “Nobody could tell us why.” Alas, Brown and Gordon were given the “option” of aborting, but they refused.

“There was no way we were going to abort our baby just because she had club feet or problems with her legs,” she said. “Disabilities are not a barrier to a happy life. But the doctors were concerned that the disabilities may have been caused by a genetic condition with much more serious implications.”

Tests would point to a rare nerve condition called fetal akinesia deformation sequence. “It’s fatal and begins by fusing limbs, before shutting down vital organs causing death in unborn babies,” Strange wrote.”If the babies do survive birth, they only live a short time after. “

The couple was, of course, devastated. Moreover, “No test could tell us for certain that is what Elsie had. We would just have to wait and see how it progressed for the rest of the pregnancy. I was advised to look out for reduced movement, a sign other limbs were fusing.”

At 32 weeks, Elsie’s movement slowed dramatically. When they had another scan, they were told Elsie did in fact have the condition “and that it was spreading.”

They cancelled orders for a pram [stroller] and a cot and started to plan her funeral. “‘We cried and cried because we hadn’t given up on her but now it felt like all hope had gone,” Ms. Brown told Strange. ”I desperately wanted to believe they were wrong but you cannot ignore what the professionals are telling you.”

Strange does a wonderful job describing how the couple told their children that their sibling might not make it. Also how when she went in for an induction at 39 weeks, even though the expectation was that the baby would almost certainly be born dead or die quickly, Brown had her labor monitored.

“I felt I needed to know if my baby was coming into the world alive or dead even if she wasn’t going to live long. We had got through the whole pregnancy, I didn’t want her to die during birth if there was a chance I got to hold her, if only for a few minutes.”

Then, after an 18-hour labor, Brown had an emergency C-section. Even though Brown thought “it was the end,” when they lifted Elsie out “she was crying and moving her arms and basically doing all the things we had been warned she wouldn’t do.”

Brown told Strange, “We were astonished to be told things were looking good and they were very optimistic. Apart from the issue with her legs there appeared to be nothing wrong with her.” Five days later, they took Elsie (who is now 11 weeks old) home.

Doctors don’t know what her condition is, but she no longer fits the criteria for fetal akinesia deformation sequence. Rather than be unhappy with doctors or the hospital, Brown expressed only gratitude. She told Strange

“We are in no way at all angry about what has happened, just so pleased that they were wrong or Elsie wouldn’t be here today.

“It is such a rare condition and so very hard to diagnose that we know the medics were only doing their very best by telling us what all the signs pointed to.

“Thankfully, it doesn’t appear now to be the case and we couldn’t be more delighted about that.

“The care we have received has been absolutely amazing.”

Categories: pregnancy