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Amniotic Band Syndrome

June 8, 2011, 10:10 PM by Kelli Grant

Amniotic Band Syndrome
SIOUX FALLS, SD - When parents get their first glimpse of their unborn baby in ultrasound, it's a chance to find familiar features, watch baby turn somersaults and anticipate the moment that they'll get to meet.

But for some families, that ultrasound appointment becomes a day they'll never forget and not for all the right reasons.

Yet receiving bad news at 20-weeks pregnant has actually made one mom even more thankful for her little blessing. 

Amy Johnson had been looking forward to seeing of her unborn child for 20 weeks. But that routine ultrasound didn't have the happy ending she'd hoped for.

“They called me and said that we have...we see something on the ultrasound that isn't quite normal. We aren't seeing a right forearm,” Johnson said.

A follow-up appointment was made and doctors confirmed the news.

“I was completely blown away. I was very sad,” Johnson said.

When Arianna was born last September, it all became reality.

“You go through pregnancy expecting everything's going to be perfect; you're not going to have any health problems.  Nothing's going to be wrong with your child.  And then you find out different,” Johnson said.

Doctors weren't sure even how it happened right away, but shortly after birth Arianna was diagnosed with something called Amniotic Band Syndrome, a rare condition which can happen in as little as 1 in 10,000 pregnancies.

“It's when your amniotic sac tears on the inside, the inner liner.  And the stringy material wraps around the arm bud or leg bud or whatever part of the body and causes amputation of the limb,” Johnson said.

“Sometimes with Amniotic Band Syndrome, there can actually be other amputations of different limbs and problems with different organ systems and also the belly and the head,” Sanford Maternal Fetal Medicine physician Dr. Michael McNamara said.

Johnson's physician, Dr. Michael McNamara, says it likely happened between six and 10 weeks gestation when Arianna was only centimeters big.

“They can become entangled in anything that's there,” McNamara said.

Arianna is now nine months old and doesn't even know she's different.

“All she has is a missing arm and she's as healthy as can be,” Johnson said.

One word to describe her is feisty and her abnormality is her normal.

“I don't want to dwell on it. We're gonna get passed this; we're gonna do whatever she needs. Whether it's prosthetics or not and go from there,” Johnson said.

It's something they're working on even though Arianna has already begun using the arm she was born with to crawl and even pull herself up.

“We're really happy that she's developing well and learning to use her arm the way it is,” Johnson said.

The family is focusing now on raising a happy, healthy little girl. A child they know won't let anything stop her from achieving what she wants.

“I just want her to be happy and successful in whatever she does. She's perfectly capable of doing what she wants to. She'll decide when she gets there,” Johnson said.

The family has been traveling back and forth to Shriner's Hospital in Minneapolis for Arianna's care. And they've put together a fundraiser with 100 percent of the proceeds going to Shriner's Hospital for Children.

Ari’s Dream Shoot & Charity Festival
September 10 & 11
Archery Outfitters – 1811 N Lowell Avenue in Sioux Falls

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