With most of his time on Earth on life support, Judson is the sickest baby at St. Louis Children’s Hospital. This story, though, is one of fortitude — of Judson’s tiny willpower to battle a deadly birth defect, and of his parents’ reliance on their faith and community to get through what could break down emotionally even the strongest person.

Most one-month-old babies can lift their heads briefly, bring their hands to their faces and respond in some way to loud noises.

They cry. And cry. And scream. And cry some more.

The first month of life is one full of bonding for parents and their children.

That’s not the case yet for Judson Stewart and his parents, Jason Stewart and Laura Williams, of Monroe City.

His parents haven’t heard him cry. They haven’t held him.

Born with congenital diaphragmatic hernia (CDH), Judson is in the fight of his life just one month after birth.

With most of his time on Earth on life support, Judson is the sickest baby at St. Louis Children’s Hospital. This story, though, is one of fortitude — of Judson’s tiny willpower to battle a deadly birth defect, and of his parents’ reliance on their faith and community to get through what could break down emotionally even the strongest person.

As his dad Jason said, “He’s a miracle, definitely. He has baffled doctors and defied all the odds.”

Judson’s beginning
Jason, a fuel tank driver out of Canton, and Laura, a para-professional with the Monroe City R-II School District, found out they were having a child on June 15, 2015.

Three months later, on Sept. 15, 2015, they received a twin set of news: their child was a boy and he had CDH — a birth defect that affects 1 in 2,500 babies.

CDH occurs when the diaphragm of a fetus develops abnormally. The malformation allows organs in the abdomen (i.e. intestine, stomach, liver) to travel into the chest cavity, seriously impeding the growth of the lungs and heart.

Half of the babies diagnosed with CDH will die. In the U.S., 800 babies will lose their battle with CDH this year.

On the day of diagnosis, the couple remembered not even hearing of CDH before.

“It affects so many babies each year, but no one really knows about it,” Jason said.

After learning of their son’s condition, Jason and Laura traveled to St. Louis about every three weeks to monitor their baby’s growth. Hannibal OBGYN Dr. Laura Maple co-managed Laura along with the fetal care center at Barnes-Jewish Hospital to monitor the severity his condition.

On Jan. 30, Laura gave birth to baby Judson.

Judson’s first hours
Laura never got to hold her newborn. Immediately in danger, delivery room staff intubated Judson and whisked him off to the neonatal intensive-care unit (NICU). Soon after, Laura and Jason discovered the fighting spirit of their son.

He lasted about four hours on his own before doctors decided he wouldn’t make it through the night without life support. That first night was a true test for the couple. They weren’t sure if their son would make it through the night. But the morning came, and Judson was still fighting.

By the time of his birth, Judson’s lungs hadn’t fully developed. In fact, they were remarkably underdeveloped.

Due to CDH, his right lung had developed to about 85 percent of what’s considered normal. Worse, his left lung was one-third of the size of his undersized right lung. Thirty-two days later, his vital organs can’t keep up with demand.

“His heart and lungs aren’t strong enough just yet to live on his own,” Jason said. “He can accept the oxygen, but his body is having an extremely hard time of letting go of the carbon dioxide in the exhale.”

Judson’s first month
Judson is day-to-day, Jason said.

But each day that passes, Jason and Laura see new signs of resilience in their son. To date, he’s had six surgeries, four procedures and — at last count — 66 blood transfusions.

While most parents start to get a sense of the personality of their child, Judson has been connected to machines keeping him alive. On day one of Judson’s life, doctors connected him to an ECMO (Extracorporeal Membrane Oxygenation) machine. The ECMO machine acted as Judson’s heart and lungs.

While ECMO essentially kept Judson alive, the use of a machine for more than a month on a CDH is unheard of. ECMO was simultaneously helping and harming.

Notorious for causing brain bleeds in infants, Judson needed to get strong enough to live without ECMO.

“We’re in a race against time to get him of ECMO,” Jason said on Wednesday, March 2, from a conference room of St. Louis Children’s hospital.

Doctors performed multiple “clamp tests,” where doctors clamped the ECMO tubes to see if Judson could survive on his own. Each time, he failed, as the clock ticked to get him off the life support device. Doctors switched him from a ventilator to an oscillator.

Judson’s breakthrough
With 32 days on ECMO, a supposed record for St. Louis Children’s Hospital, doctors tried a “clamp test” again on Thursday, March 3.

Jason said 20 doctors, nurses and hospital staff gathered around Judson to see if his body had gotten strong enough. Dr. Kathryn Bernabe, Judson’s pediatric surgeon, return with papers showing if Judson succeeded.

If the group huddled in Judson’s room could have burst into applause, Jason said, they would have. Judson passed, and was taken off of ECMO around 1 p.m. March 3.

“She had that paper in her hand, and it was like she was holding the golden ticket to get into the Willy Wonka factory,” Jason said. “We knew he had passed.”

Judson entered surgery Friday afternoon, March 4, to remove the ECMO tubes in his neck. He remains on an oscillator to help him breathe, but this week’s developments are another step on an improbable road to recovery. Doctors will now work to strengthen his lungs to eventually take him off the oscillator.

Judson’s support
Seeing their son strapped to machines each day has been unspeakably difficult, Laura said.

“We’ve hit the highest of highs and in the same minute the lowest of lows,” she explained.

Jason added that while most parents get to know their children in the first month, he and Laura have had to latch on to the littlest of things.

“He is a daddy’s boy,” Jason said proudly. “He gets excited when his parents come in the room. The heart monitor will go from 120 to 160 and higher.”

But while those little moments bring joy to Jason and Laura, a month with a sedated and struggling baby has had an enormous effect. Jason credits his faith and the Northeast Missouri community for helping the couple cope.

“Our faith is the only thing that has gotten us through this. God above. He deserves all the credit,” he said. “That’s what we believe.”

Having the sickest child in the hospital has united the Monroe City community. Jason said old feuds have been settled to unite in support of Judson.

“It might sound weird to see this little baby, but he is such a blessing. God has used him as such a blessing. To know that your son’s story is bringing people together and doing good in just 32 days, thats a blessing from above,” Jason said.

“For those who believe in a certain faith, it’s brought them closer to God. For those who don’t believe in a certain faith, it’s made them want to be a better person,” he added.

Some have given monetarily, others have lifted the family up in prayer. Beyond Monroe City, the couple said they have connected with other families who have a child with CDH.

Families in Hannibal and Palmyra have connected with Laura and Jason. Some of the people they’ve met have children overcame rough beginnings. Some couples have lost a child.

“They all have different levels of severity and different stories,” Laura said.

Judson’s future
Despite Judson’s amazing progress, he faces a long road ahead.

“We expect to watch Fourth of July fireworks from his hospital room,” Jason said.

Jason and Laura qualified for the Ronald McDonald House and are just minutes away if they are needed at the hospital. No matter how difficult a path the journey may take, Laura and Jason say they won’t give up.

“If there’s one thing I take from all of this, it’s don’t give up. Never, ever give up. If he’s not giving up, I’m not giving up. Just keep putting one foot in front of the other. Him going through this makes me think again what I complain about. That would be my biggest message to everyone,” Jason said.

The couple encourages everyone to educate themselves about CDH. There’s no known cause of CDH and mortality rates hover around 50 percent.

So far, Judson has beaten every odd. The “little knucklehead” — as Jason lovingly called him — continues to push back in the fight of his young life.

As Jason said, “We are in the midst of our miracle.”

Follow Judson’s story by searching for “Just Breathe Baby Stewart” on Facebook. Reach editor Eric Dundon at eric.dundon@courierpost.com .