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Baby born with organs outside of body at Children's Hospital

Baby is recovering with no complications
Posted: 10:27 PM, Apr 03, 2017
Updated: 2017-04-04 15:54:04Z

A baby boy is born with multiple organs on the outside of his body, which is an extremely rare disorder, and his parents traveled from Missouri to give birth at Children's Hospital of Wisconsin.

"We were happy to see him when he was born.  He was beautiful and we fell in love with him instantly, but it was also very scary," said mother Shary Doyle.

Casey and Shary Doyle found out their son would have complications at their 20 week ultrasound.

"It's supposed to be a great day.  We show up and everything's perfect and she leaves the room comes back with the doctor and says I see something pushing out of the stomach," Casey said.

When the couple learned their baby would be born with his bladder and most of his intestines on the outside of his body, known as Cloacal exstrophy, they did some research.

"We were terrified the whole time of how it was going to end and how it was going to come up as we went.  It was definitely scary," Shary said. 

The parents found Children's Hospital of Wisconsin leading the way in the complex surgeries their baby would need, so they headed north before Maddox was born.

"It was happy and scary at the same time," Shary said.

At six days old, doctors operated on baby Maddox’s intestinal tract.

"Part of Maddox's disorder is that his intestines are a little shorter than normal and aren't really fully developed," said Pediatric Surgeon Dr. Amy Wagner.

Maddox is recovering slowly, but had no complications.  The next surgery will be on the bladder.

"During that there's genital reconstruction and orthopedic reconstruction," said Chief of Pediatric Urology Dr. John Kryger.

At most hospitals, Bladder exstrophy is done over three surgeries.  Doctors at Children's Hospital of Wisconsin came up with a way to do it in one surgery, ultimately keeping the risk of complications down. Before that operation can happen for Maddox he's working on gaining some weight.

"Right now we're focusing on optimizing nutrition now to help him grow, gain strength," Kryger said.

The doctor says only 1 child out of 100,000 to 1 in 400,000 have this kind of disorder.

This family finds comfort knowing their baby is in good hands, some of the best.

"We have no regrets for coming and traveling so far away.  We would do it again in a heartbeat," Shary said.

Doctors say Maddox will most likely look like any other baby after his surgeries.  They'll monitor him as he gets older, but he's expected to live a normal life. 

For more about baby Maddox visit: https://www.gofundme.com/help-for-maddox

 

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