Gastroesophageal Reflux Disease (GERD): Ari's Story
Patient Story Highlights
- After multiple miscarriages, parents Caprice and Marcus brough Ari, their miracle, into the world.
- Ari was born five weeks early, but after close monitoring in the neonatal intensive care unit at John Hopkins All Children's Hospital, was able to go home.
- After a frightening experience at home, Ari was brought back for further examination. She was then diagnosed with gastroesophageal reflux disease (GERD).
Bringing Ari into the world felt like a miracle.
Parents Caprice and Marcus had been trying for so long, and had suffered loss after loss, with multiple miscarriages.
But baby Ari defied the odds.
“We started crying in the delivery room, and then everybody else started crying too — because they all knew our story,” Caprice says.
Ari was born in late April, nearly five weeks early. She was tiny, but she was healthy — and she was theirs.
Late pre-term babies often need some time in the NICU for their lungs to get stronger, to gain weight and to show effective eating patterns.
“We also monitor these babies for at least five days to make sure they don’t have what are called ‘events,’” says neonatal hospitalist Candice Guevara, D.O., M.S., “which is when the baby’s heart rate or oxygen levels drop, or they have pauses in their breathing.”
Baby Ari met all her milestones and was generally adored in the NICU.
“The NICU was so good — very informative, taking such good care of her and loving on her,” Marcus says. “They’re very dedicated to what they do.”
After a week in the NICU, Caprice and Marcus were able to take their beloved baby girl home. It felt almost too good to be true.
Now home with their new baby, Caprice and Marcus were in a fast learning curve, experiencing all the stress — and the joy that new parents feel.
But on Mother’s Day, something frightening happened with Ari.
Marcus went to check on the baby as she napped — and saw that her lips were turning blue, as if she were struggling to breathe.
The couple called the paramedics, and Caprice began suctioning Ari.
“She had thick saliva coming out, like she couldn’t clear her pathway,” Caprice says. “She began spitting up out of her nose and mouth.”
Ari was rushed to Johns Hopkins All Children’s and admitted to the NICU.
Why was Ari having trouble keeping her food down?
Often, newborns, especially preemies, need more time to develop the reflexes to “suck, swallow, and breathe” safely, without choking.
Ari’s doctors in the NICU consulted closely with an experienced speech therapist (the same muscles we use to talk are first used to learn to swallow), who worked with Ari and helped the family determine the best positions and feeding techniques for her condition. Her formula was changed, as were her types of bottles and nipples.
After nine days, Ari was doing well and was able to go home, with her parents monitoring her closely.
Reflux, where stomach acid moves back up from a baby’s stomach, is something that almost all babies experience from time to time as they develop the muscle between the esophagus and the stomach. But there is a spectrum as to what is normal reflux and what is severe enough to ultimately require a diagnosis and specific interventions.
By early summer, Ari’s situation was becoming more apparent. Her parents, distraught by her choking and vomiting episodes, brought her to the Emergency Center of Johns Hopkins All Children’s Hospital.
Pediatric emergency medicine physician Ebony Hunter, M.D. examined Ari.
“As far as reflux, it was a ‘slam, dunk’ for Ari,” Hunter says. “Their story was classic — she’s feeding, she’s choking, gasping, stops breathing. You expect a preemie baby to reflux, but not to the extent of what Ari was now doing.”
Ari was diagnosed with gastroesophageal reflux disease (GERD), and was admitted to the hospital, where specialists with the hospital’s gastrointestinal (G.I.) team came up with a treatment plan. Ari received medications to treat her GERD. Tests had also revealed that she had a dairy allergy, which can contribute to reflux. Her doctors and care team made additional changes to her formula and prescribed a thickener to help with the reflux.
On The Mend
Ari’s condition has continued to improve in the months since she left the hospital. She is a happy baby, growing and putting on weight, and she is now off her reflux medications.
“She is doing amazing! Her reflux is so much better,” Caprice says.
Caprice says keeping a diary of her child’s eating and patterns has been helpful, as well as taking a photo or video to show her pediatrician if she is unsure about something. She and Marcus are also careful to pace Ari’s eating, and to keep her upright for 20 to 30 minutes after she eats.
Parents can expect some reflux in their babies, according to Hunter. But if they begin spitting up after almost every feeding, if they are failing to put on weight — or especially if they are choking, irritated and arching and crying when they eat or showing signs of difficulty breathing, medical attention and interventions are key.
There’s not always a quick fix. While babies can sometimes develop GERD around 2 to 3 weeks of age, they may not fully grow out of it until they are around 1 year.
“It’s one of those frustrating diagnosis,” Hunter says. “You really have to go at the baby’s pace. If you can treat the baby without surgeries or extreme interventions, and you can allow them to grow and get beyond this stage, that is ideal.”
Ari has so many more exciting things to do these days than to contend with reflux. Her daddy is an R & B singer and musician, and she is proving to be quite the daddy’s girl.
“She hit a high soprano note the other day that was out of this world,” Marcus says. “I thought, ‘She is going to blow … She’s going to be a singer!’”