Posted on May 11,2018
A premature baby meets many challenges as she gets ready to finally leave the hospital.
With tiny undeveloped lungs no bigger than two teaspoons gasping for breath and fingers like long-grain rice clutching at air, Kimbriah’s entry into the world at 24 weeks was tenuous at best.
“I didn’t get to hold her until she was 3 months old,” Katrina, her mom, recalls.
Pulmonary hypertension, prematurity, chronic lung disease and several near-death experiences were the odds stacked against her. She weighed about 1.1 pounds at birth, a little more than four sticks of butter.
“Kimbriah was born under Johns Hopkins All Children’s care in Brandon Regional Hospital’s Level III neonatal intensive care unit (NICU) May 20, 2017,” explains Aaron M. Germain, M.D., a neonatologist, and just one of the many physicians who have contributed to her care and helped keep her alive for the past year.
Johns Hopkins All Children’s Hospital has a pediatric affiliation with several community hospitals, including Brandon Regional, which allows families to receive expert care throughout west coast of Florida.
Kimbriah was born extremely premature, at the threshold of survival. She developed several complications typical of extremely premature births, including bronchopulmonary dysplasia and pulmonary hypertension, but at three months, after picking up a simple cold (rhinovirus) her condition eventually became, “severe enough that immediate emergency transfer to Johns Hopkins All Children’s was required for a higher level of care,” Germain continues. “She was in hypertension crisis. Her arteries were tightening up, and she needed the expert multidisciplinary care we offer with pediatric cardiologists, pulmonologists, neonatologists and therapists. Kimbriah's case would become an example of the life-saving benefits provided by Johns Hopkins All Children's affiliations with our community hospitals.”
This is where Joana Machry, M.D., stepped in as Kimbriah's neonatologist and most ardent supporter and cheerleader. Machry saw something in Kimbriah and knew in her gut that, in spite of her dire condition, she was ready for a fight to keep her alive.
Her birthweight was tiny, but nowhere near the tiniest. Her lung disease was manageable and the pulmonary hypertension wasn’t anything Machry hadn’t beaten before. Inflammation of the lungs: fixable.
“Kimbriah was on a ventilator and steroids already when she got the rhinovirus. Her lungs were in very bad shape,” Machry recalls. “She was on 100 percent oxygen. We needed to stabilize her fast. It took a month. We were not sure she would survive.”
Machry paints a solemn picture: an IV tree filled with drips, heavy sedation, nitric oxide, worried parents ... a nearly lifeless infant.
“It was really just about keeping her alive at that point, but I knew there was more going on," Machry says. "She was aspirating into her lungs chronically and that was aggravating her lung condition. She needed a tracheostomy. This was the most challenging part of her care." A tracheostomy consists of making a hole in the neck and opening a direct airway.
It isn’t a procedure you want to perform on an infant unless other options have been exhausted. When you are dependent on the ventilator to live, it is the only option.
It was time to pull the NICU Tracheostomy Team together and discuss the risks. Not everyone was sure Kimbriah was ready for surgery, but Machry put up her dukes. She called Prabhu Parimi, M.D., M.B.A., director of the Johns Hopkins All Children's Maternal, Fetal & Neonatal Institute, which specializes in challenging neonatal cases. “I pleaded, ‘I think this is her only hope. We have to do this,’” Machry recalls emotionally.
Parimi approved. In just two months, Kimbriah had become part of the NICU. She was family. Machry sat down with Kimbriah’s mother and grandmother and explained the severity of the situation. She explained that there were risks. Kimbriah might not survive, but without the surgery, she definitely wouldn’t survive.
Katrina agreed the risk was worth it.
Two months after her arrival at Johns Hopkins All Children’s, and at 6 months old, Kimbriah finally found her breath. The surgery was a success. “I didn’t want to do it,” her mom recalls. “But after the surgery, her personality really started to come out.”
“It’s a question you always have with extremely low-birth-weight preemies,” Machry explains. It’s not just personality you worry about, but with an infant that tiny, you wonder if the brain is intact. “We just didn’t know with Kimbriah," Machry says. "She was so very sick, but after the surgery, I looked into her eyes, and she was there.”
Don’t be fooled. Kimbriah has a long road ahead. Today, she bounces on the lap of a NICU nurse. Big smiles, dancing eyes. She is the center of attention, her feeding tube and trach line bouncing along with her. Her curly black hair is highlighted with a yellow ribbon.
She has never known another way of being. Life in the NICU. She’s a rock star here. Not a single nurse or doctor passes room 667 without peeking in.
“How is she today?”
With the trach, Kimbriah can’t make a sound. At 11 months, her mother has never heard her cry, gurgle, or giggle. Until this day, she has never swallowed sweet pureed carrots or bananas. But her speech therapist sits her down, dips the spoon into soft banana puree and touches it to her lips. Tasting food is therapy for Kimbriah. Though she remains on a feeding tube for now, her caregivers know she needs to learn the experience of eating, of taste, of holding a spoon.
After all, she is going home soon.
The bananas are a big hit. Mom walks in and gives her a kiss. She knows their struggles in many ways are just beginning. Kimbriah will need two full-time caregivers for at least a few years until she if off the trach that she needs for breathing. Her lungs are growing stronger every day. Katrina and her own mother—the designated caregivers—participate in simulation training to learn how to care for Kimbriah at home in the event of an emergency. There are several scenarios set up in a staged bedroom on campus, and they walk through the steps of what to do if the trach gets clogged, or if it falls out and what to do when it needs to be replaced.
It’s complicated, but doctors will not let Kimbriah leave until they are convinced that the family is comfortable with their tasks ahead. The Johns Hopkins All Children’s Home Care team will check in, replace equipment as needed and visit with Kimbriah to see how she is doing.
Katrina feels ready. “She’s come a long way. We never expected her to be in the hospital this long, but she’s pretty happy with the care she is receiving,” she says, knowingly. “She’s always smiling. I really appreciate everything they’ve done for her here. The doctors have always taken the time to call me and let me know what’s going on. They break it down so I can understand.
For Machry, it’s almost time to exhale. “We spent 11 months fighting to keep this baby alive. It’s going to be really hard to let her go out to the world,” she says trailing off.
But Machry and the specialists on the NICU Tracheostomy Team fought the good fight for this baby.
And everyone won.