BIG SPRINGS, Neb. – Baby Max, son of Joy Soper and Michael Cearns, was born on Sept. 8, six weeks premature. At the end of October, he came down with pneumonia and is currently in the NICU at the children’s hospital in Omaha, Nebraska. The family is asking for prayers for Baby Max and donations to help them through this difficult time.

“He’s the sweetest little man.” Joy, Max’s mother, said fondly. “He has just stolen everybody’s heart. He’s got the biggest blue eyes and he’s got this softest spirit. He’s very patient. All of the nurses are just amazed at how patient he is with everything that he's gone through.”

Max’s paternal grandmother, Tammy Cearns, has set up a GoFundMe fundraiser in his name. The fundraiser page can be found at gofundme.com/f/sweet-baby-max.

“Any little bit helps, but if you can’t donate, please keep him in your thoughts and prayers and please share this (information),” Tammy asked.

There is also a donation drop-off for Max at Pinnacle Bank in Michael’s name.

Max was born by emergency c-section in North Platte six weeks before his due date, which was Oct. 18. Joy explained that Max had stopped growing at 28 weeks which caused stress on both him and her. She ended up with preeclampsia and was in high danger of stroking when they did the c-section.

After Max was born, he began having what the doctors thought were stridors. A stridor is a noisy or high-pitched sound with breathing usually caused by a blockage or narrowing of the airway, according to stanfordchildrens.org.

“It’s a weakening of his windpipe, which causes a very loud noise when he breathes,” Joy explained. “It did somewhat resolve itself before we left the NICU.”

Max stayed in the NICU for three weeks after his birth before going home to Big Springs, NE. By the time he was released to go home on Sept. 29, Max was eating on his own, gaining weight, and the stridor had somewhat resolved itself. His breathing was fairly normal and was not as loud as it had been at birth.

At home, Max’s health started to deteriorate. On Oct. 29, Max aspirated and came down with pneumonia.

“I think it’s important for people to advocate for their child,” Joy said. “I knew something was wrong. I knew it wasn’t normal. They really did think it was the stridors, but then I got to the point that all of these different things started happening. It was just by the grace of God that our pediatrician really fought for us to come down here. There’s a waiting list for Omaha, it’s not easy to get in here.”

Joy explained that Max would show difficulties in his breathing and his feedings slowed down. At times, he would get really tired and have blue spells, a slight blue coloring caused by lack of oxygen.

After much perseverance and several tests, Max was able to go to Omaha for a consult. However, during the consult, it was decided that Max needed immediate admission to the Children’s Hospital. After being admitted, Max’s stridor was re-diagnosed as severe laryngomalacia.

“Laryngomalacia is a condition that results from a birth defect in a child’s voice box. The soft tissues of the larynx fall over the airway opening and partially block it. This can result in a stridor,” according to childrenshospital.org.

Joy said according to Max’s doctor, a specialist in this area, “Max has the most severe case that he has seen.”

Upon admission, Max was put on a feeding tube and six liters of high-flow oxygen and has had a team of 15 to 20 people working around the clock.

According to the information given to Joy, “About five percent of infants with laryngomalacia will fall into the severe range with failure to thrive, obstructive sleep apnea, and/or signs of respiratory distress including tachypnea and retractions. These children require supraglottoplasty surgery to relieve the obstruction.”

On Friday, Nov. 18, Max underwent surgery to improve his laryngomalacia.

“Overall, his breathing has improved, however, this condition is something that only time will tell if it will resolve itself or it won’t,” Joy said. “There have been people that have had multiple surgeries and then there’s been kids that have just had the one surgery and everything is fine. It’s all just going to depend on how Max is.”

It is unknown how much longer Max will need to stay in the hospital. Currently, he is still on a feeding tube and is having other tests done, including an EKG.
“Max has a long road, this isn’t just going to resolve itself,” Joy explained. “This trip is going to be one of many to make sure everything’s okay. Like right now they’re doing an EKG because he was under so much stress trying to breathe, they’re worried it’s affected other things we don’t even know. We’re just getting into all of the other parts of this.”

When Max is released from the hospital the specialists, who are at least five hours away, have decided that they will work out his care with his pediatrician. However, if it is necessary, Max may need to come back to Omaha.

This whole ordeal has put Max’s family in a difficult situation. Both of Max’s parents have been with him this entire time, so they have been unable to work. Expenses and bills have been piling up.

Joy was unable to return to her job after her maternity leave ended resulting in her termination. Michael was forced to walk away from his job when Max was admitted to the hospital in Omaha. Max’s siblings have been staying with their grandparents because of school.

“We have a whole life that we had to walk away from to do what was best for Max,” Joy said. “I feel like we had to choose our jobs or our child, or we had to choose being parents to our other kids. It’s not easy.”