What do you do when your child sounds like a washing machine? This was the dilemma facing Erin and Jonathan Robinson. Their twins, Ari and Malia, were born six-weeks premature, but after a few days in the hospital, they were declared healthy and sent home. While Ari sailed through his first few months, Malia struggled. “She was up all night, every night–throwing up and screaming,” says Erin. “And then there was this noise. Her belly made this awful, muscle-contracting, whooshing noise every time she ate. Jonathan was a medic for ten years, and he’d never heard a sound like that without a stethoscope.”
But everyone assured them it was normal. One day, after she threw up for 24-hours straight, they sent a video to the pediatrician. “It was so bad. Sometimes just spittle and sometimes like the exorcist–projectile, green, practically across the room,” says Erin. Thinking Malia may have pyloric stenosis, the pediatrician sent them to the emergency department. After an examination, ultrasound, and x-rays found nothing unusual, they sent Erin and Jonathan home, saying that it was probably gas or a virus.
“It just didn’t make sense to us,” says Erin. “She was three-months-old. She wouldn’t have had a stomach virus for her entire life. Something wasn’t right.” In their search for answers, they went to a pediatric chiropractor who had treated similar problems before. He thought Malia’s discomfort stemmed from a misalignment in her back. After one treatment, Malia had a quiet night but did not improve with the next few treatments. Erin and Jonathan were out of ideas. “I went vegan because I was breastfeeding. I took everything out of my diet that might bother her. We’d done the pediatrician, the ER, and the chiropractor, and nothing was helping,” says Erin.
One day, a friend who is a nurse, was holding Malia when she made the noise. “His eyes got big, and he said, ‘What the hell was that? She sounds like a washing machine!’,” says Erin. He urged them to reach out to their pediatrician again, who referred them to MUSC Children’s Health. They made the two-hour drive on a cold February morning to see Jordan Whatley, MD, a pediatric gastroenterologist at MUSC’s Shawn Jenkins Children’s Hospital. “Initially, her symptoms seemed like reflux,” says Whatley. “But, during our visit, Erin kept coming back to this loud gurgling noise and how much fussier she was than her brother. She hadn’t gained as much weight as him, but it wasn’t a remarkable difference.” Then, both babies started crying loudly. “It was really serendipitous,” says Whatley. “I offered to hold Malia, and suddenly there was this loud swooshing noise from her upper belly into her chest. I could feel it vibrate through her back, and I knew right away that something atypical was going on."
Whatley ordered an upper-GI series to get a good look at the anatomy of her digestive system. Meryle Eklund, MD, a pediatric radiologist with MUSC Children’s Health did the study. “We do a lot of upper-GI fluoroscopes and most are normal. I always speak with the family beforehand to get as much detail as I can about what’s going on. This family had been to a lot of other places already, and she’d driven two hours to come here. I could see she was really a bit distraught. She talked about how her daughter was lagging behind her twin and had a weird sloshing sound in her chest ‘like a washing machine’. I'd never heard that description before,” says Eklund.
Image of baby Malia's hiatal hernia.
As Malia drank the contrast solution, Eklund and a resident watched the scanner closely. At first everything looked normal. “You’re watching in real time, so it takes a minute,” says Eklund. “As her stomach slowly opacified, we could clearly see this unusually large hiatal hernia. Most of her stomach was up in her chest instead of down in her abdomen. It was pinched almost in half where it went through her diaphragm. So, food was very delayed getting down into her digestive tract. I’ve never seen a hiatal hernia this large in such a young and otherwise healthy child.”
Eklund told Erin that her instincts were right and explained what the scan had found. “Dr. Eklund was so sweet, but my heart sank when I saw how Malia’s stomach was like a figure-8 because it was so cinched up. I felt the color just drain out of my face,” says Erin. Eklund immediately paged Whatley. Malia’s hernia would need to be surgically repaired. At home that evening, Erin was surprised to get a call from MUSC. “It was seven or eight at night, and Dr. Whatley called to speak with Jonathan because he hadn’t been at the appointment. He wanted to be sure he answered all of our questions,” says Erin. “It was so comforting! He called almost every day before surgery to make sure we were OK.”
Although it was an exceptionally large hernia, the surgical team could repair it with a minimally invasive, laparoscopic technique. The difference in Malia was immediately visible. “She’d never smiled,” says Erin. “Not once. So, when she woke up and smiled at us, we just burst into tears. It was the sweetest thing we’d ever seen. She’s a totally different baby, now. The screaming has stopped. Her hiccups don’t sound like she’s choking anymore. She’s interacting with her brother. Before, she just sat and stared into the distance. Her personality is coming out.”
Although symptoms in infants can be hard to interpret, Whatley emphasizes the importance of listening to parents. “As providers, we have to acknowledge that they know their child best. It’s our job to maintain a high index of suspicion and follow through when things aren’t making sense. When I saw how long and hard they’d advocated for their child, and then I heard that noise, I couldn’t let it go.”
For their part, the Robinsons can finally focus on raising their twins. “We’re really, really, grateful,” says Erin. “If we had to go through this, we’re so glad it was at MUSC. They could not have been more caring and supportive.”
Malia Robinson PostOp
Progressnotes Spring 2021