Miracle Monday: Meet Bearett!
Bearett’s 1st birthday party had cake, balloons, family, friends—and a crowd of neonatologists and nurses from the NICU at the Children’s Hospital of Georgia. It’s not your usual birthday, but Bearett’s not your usual little boy.
Born with CDH—congenital diaphragmatic hernia—Bearett spent his first month and a half of life in the hospital. “We’d never heard of CDH,” said Jessi, who with her fiance Chipper found out that Bearett had the disorder when she was 16 weeks pregnant. “Most people think, ‘Oh, hernia, no big deal.’ Then we Googled it and we were terrified.”
In CDH, the diaphragm—the muscle that separates the chest cavity from the abdomen—doesn’t develop. Without it, internal organs start to move into the chest, crowding out the lungs and keeping them from growing. “When Bearett was born, his right lung was small, and his left lung wasn’t visible at all,” said Jessi. “His spleen was in his armpit, his appendix was up by his shoulder and his heart was in his other armpit.”
Many of the same NICU staff at Bearett’s birthday were there in the room the day he was born. Jessi just caught one half-second glimpse of her new son before they rushed him to the NICU, in heart failure.
“Then, he kept throwing us curveballs,” said Jessi. Bearett had to go on ECMO—a machine that would do the job of breathing for him and pumping his heart—almost immediately. Most babies with CDH can come off ECMO after a few days, but Bearett’s heart and lungs were so unstable, he stayed on for 15 days. Surgeons even had to surgically repair his diaphragm while he was still on it—which wasn’t ideal.
But, it worked. Bearett came off ECMO two days after his surgery, just in time for Mother’s Day. “He’ll never top this Mother’s Day present,” Dr. Walter Pipkin, the pediatric surgeon who did the repair, told Jessi and Chipper.
Jessi got to hold her son for the first time a week later—“and I held him for four hours. It was such a surreal feeling. I was crying, the nurses were crying—it was a special moment.”
Bearett is 1, but he has some other special numbers too. He’s the only child at the Children’s Hospital of Georgia to survive after being diagnosed with CDH at 16 weeks. He’s also the 583rd child to be on ECMO.
In just the past few months, Bearett has gone from not being able to sit up to fast crawling to standing. His right lung is normal now, and his left is up to half the size it should be. But lungs continue to grow throughout childhood, and Jessi knows Bearett will catch up, just like he has with everything else. “Developmentally, he’s just a month or so behind, which is nothing,” she said.
Bearett still visits the children’s hospital every couple of weeks. “It’s definitely like our second family,” said Jessi. “It’s our joke: It’s bittersweet, because no one wants to have to bring their child to the hospital, but this place is super special to us. Everyone—from his surgeon and his neonatologist to the nurses and his speech therapist—they just love him to pieces and treat Bearett like he was their own kid.”