Ruther Glen family celebrates homecoming of baby with rare disor - NBC12 - WWBT - Richmond, VA News On Your Side

Ruther Glen family celebrates homecoming of baby with rare disorder

Juliana Johnson (Source: NBC12) Juliana Johnson (Source: NBC12)
RICHMOND, VA (WWBT) -

It’s a special homecoming, months in the making, for a special little girl. Juliana Johnson spent the first six months of her life at VCU Medical Center. She was released Monday.

Juliana Johnson was diagnosed with a rare genetic disorder. It’s one that has caused her a plethora of problems and the reason she has been in the hospital since birth.

“It’s been a long six months, but it's that time, and we're getting ready to take her home,” Felix Johnson, her father said.

Her homecoming has been a day Felix and his wife Jamie have been dreaming of, even before Juliana was born.

“At 35 weeks, my wife Jamie had a high temperature, so we took her to the emergency room at Mary Washington in Fredericksburg,” Johnson said. “They checked the baby and they couldn't find the heart. They started looking further and saw her heart was shifted to the right side, and started looking further and saw she didn't have much of a diaphragm, and some of her other organs shifted up into her chest.”

The Johnsons, who are from Ruther Glen, were told the child needed to be taken to VCU Medical Center. It’s there where they found out even more issues Juliana was having.

“She had a heart condition, a complete AV canal defect, which is pretty much a hole in the middle of her heart that allows blood to shift back and forth from both sides freely,” Johnson said. “She has a brain cyst that caused hydrocephalus. She had to get a shunt for that, but the biggest issue was a diaphragmatic hernia, which allowed organs to shift up into her chest and put pressure onto her developing lungs and cause a chronic lung disease.”

These problems were the result of a rare genetic disorder called Emanuel Syndrome. There are only a couple hundred documented cases in the world.

“We took a one-step approach to everything,” Johnson said. “We treated each issue at a time. The very first thing we dealt with was the congenital diaphragmatic hernia. As soon as she was born, they had to put a tube down her throat so she could breathe. They had to hook her up to a ventilator. Immediately after birth, they whisked her away and put her on a ventilator to get her breathing. Eight days later, they prepared her diaphragmatic hernia, and they opened her up and put a patch where her diaphragm was missing. They removed all her organs and put them where they should be. Her left lung wasn’t looking too good - at that point, it was underdeveloped. It had heart and intestines pushing up against it when she was fetal, so it didn’t grow as it should have, so we were working with the lung issue.”

Little Juliana was not expected to live.

“They brought us in and sat us down with palliative care, pretty much as soon as they found out everything, and were pretty much preparing us for the worst,” Johnson said.

But then a miracle happened: Juliana survived. On the 25th of this month, she will be six months old.

The Johnsons spent the last six months of their lives commuting to and from VCU Medical Center. They have two older children too. 

The family credits VCU Medical Center for saving their baby, specifically their nurses.

“They have helped us through some pretty difficult times,” Johnson said. “They have always picked us up and given us hope.”

The Johnsons still have a long way to go. Juliana will need more surgeries and will be back and forth to VCU Medical Center. 

If you want to help them with Juliana’s medical expenses, you can donate on her GoFundMe page:  https://www.gofundme.com/julianas-medical-fund

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