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Frazee boy born with unique heart

William Johnson was born with a congenital heart defect and had to have open-heart surgery at 6 days old. His mom, Josie, is looking for other kids' stories to help decorate a tree during Frazee's Festival of Trees. His parents both work at the Becker County Sheriff's Office and had to find a "jail-like" spot for the perfect picture.

Every child has a story.

Josie Johnson believes this and plans to make those stories heard.

She is planning to decorate a tree at the Festival of Trees event in Frazee in November and wants other stories of children with heart defects.

It starts at home for Josie and her husband Matt. Their newborn son, William, was born with a heart defect, and the Johnsons, Frazee residents, are happy to get his story out.

"We were anticipating everything was good because that's what they kept saying," Josie said after she delivered their firstborn.

But, after three days of their baby turning ash colored and his oxygen levels dipping way down when he cried, they followed their instincts and knew something was wrong. Josie said the pediatrician kept telling them the baby was "transitioning" and causing the symptoms.

"We knew something wasn't right from the get-go," she said.

"When your baby is born, if it doesn't seem right, ask questions," Matt stressed.

After William was born, doctors knew he had a heart murmur, but said he would be OK. Once they took him to Fargo, though, five minutes into the echocardiogram, doctors knew what was wrong. And it was a life-threatening situation for their 3-day-old son.

"They could see within 10 seconds something wasn't right," Matt said.

He added that they went from being told they were over-reacting to it being an emergency. Doctors said that if they'd waited a couple more days, their son would have likely died.

The next day, William was transported to the University of Minnesota Children's Hospital, and the Johnsons followed the next day. After the weekend, they learned their son, besides the heart murmur, had a heart aneurysm (which had never been found in an infant before) and was diagnosed with Tetralogy of Fallot, or "flow due to the ventricular septal defect (a hole between born with right and left ventricles) and a double outlet right ventricle," Josie explained.

The aneurysm found in William's heart had "never been coupled with a heart defect," Josie said. Doctors told her, "You have a special baby."

At six days old, William had open-heart surgery. First, he had to have a blood transfusion because of all the medications that had been pumped into his body. The surgery went fairly smooth, with only some bleeding in the chest during the surgery.

William was "hooked up to a million, zillion" monitors and IVs, Matt said. In his room, William was hooked up to 11 IVs and a line for blood -- a baby is hard to find in the pictures filled with machines.

Six days after his surgery, William was moved out of intensive care and into a hospital room. No longer secluded, Josie and Matt learned there were kids in the hospital with swine flu at the same time and just wanted to get their son home.

Two weeks later, after he was home, William got a staph infection from the surgery and had to be taken to the hospital. The topical medication he got for the incision worked for a few days until he developed puss pockets on the incision.

Every check-up seemed to bring more and more hospital visits for the Johnsons.

"Any day we can go to a check-up and don't have to stay is a good day," Matt said.

Throughout the process, Matt said they held strong, maybe because of their professions. Both work for the Becker County Sheriff's Office and are used to added stress.

The Johnsons said they were happy with the care they received in the Twin Cities and Fargo's MeritCare. They were able to be with William at all times, except when he was in surgery. And while the idea of the University of Minnesota Children's Hospital being a teaching hospital made them a little nervous in the beginning, Matt said it turned out for the best. Instead of one doctor making the decisions, there were eight discussing William and what should be done to treat him.

They also got to know the different sleeping accommodations at different hospitals along the way.

"You adapt to your situation," Josie said.

For now, Matt and Josie are enjoying being home with their son.

"We're in waiting mode right now," Matt said.

Once William reaches 3 months, but not after he reaches 6 months, he will have to have a second open-heart surgery to repair the aneurysm -- possibly in November. Then, hopefully, he will be done with surgeries.

"At least we'll be prepared this time," Josie said.

The fact that William even has to deal with an aneurysm, though, is historical.

"A bunch of people want to fly in for the surgery because they've never seen it," Matt said, referring to the age of his son while having the surgery.

While that can also bring some nerves to the Johnsons, that their son is having a surgery on his tiny heart that no one has before, Josie said they are also confident because the surgeon is confident it can be done.

It's stories like William's that Josie is looking for. She is asking for other parents to submit their child's stories of congenital heart defects. She is planning to decorate a Christmas tree during Frazee's annual Festival of Trees celebration in their honor.

"Every child has one heck of a story," she said, and she's just trying to get the word out.

Stories and photos can be e-mailed to Josie at