From Labored Breathing to Ball of Energy: Nevaeh’s Story
When Melissa Weber took her one-week-old daughter, Nevaeh, to her first pediatrician appointment, it wasn"t the simple doctor debut, height-and-weight-check kind of appointment she had experienced with her first two kids. Weber could tell something was off with her baby, and she wanted answers.
"As soon as she was born, Nevaeh just had this wet sound to her breathing that wouldn't go away," said Weber.
The doctor told her that because Nevaeh was born via C-section, it was possible she still had some extra fluid in her lungs and to give it another week to clear up.
Weber didn't make it that long. At 13 days old, Nevaeh was struggling to eat, and her breathing had completely deteriorated.
"I just knew in my heart something was wrong. She was working so hard to breathe. Her ribs were showing with every breath, and she was sucking in at the front of her throat," explained Weber.
She brought Nevaeh back to the pediatrician. There, they found Nevaeh's blood oxygen saturation level was hovering in the 70s and 80s, rather than the normal 95-100 range. They immediately rushed Nevaeh to the emergency room at Children's Hospital.
ER specialists quickly identified there was a chance Nevaeh's low oxygen levels were related an issue with her airway, and referred her to Eliav Gov Ari, MD, a pediatric ear, nose and throat specialist and head of Children's Hospital's Aerodigestive Program.
After performing a scope of Nevaeh's airway, Gov-Ari found she was born with laryngomalacia, a condition in which the voice box tissues are soft and floppy instead of strong and rubber band-like, causing her trachea to be partially blocked. Nevaeh's condition was particularly severe.
"Everything she was eating, she was choking and breathing into her lungs," Gov Ari said. "Not only was it causing irreversible lung damage, it was causing a lot of stress on the rest of her body as well."
Gov Ari explained the need to act quickly.
"He had a soft way about it," said Weber. "He went over everything, from the worst possible to least possible thing to expect, and said, ‘We don't need to wait on this.' I just knew if we didn't do the surgery, I wouldn't have a baby."
At four months old, Nevaeh underwent supraglottoplasty surgery to remove the flap over her airway. But despite the improvement in her breathing, she wasn't in the clear yet.
Making it Through Milestones
During his initial evaluation, Gov Ari had also found Nevaeh was suffering from severe obstructive sleep apnea, compromising her sleep and causing her oxygen levels to drop even lower at night. For Weber, the months that followed were filled with a constant, nagging fear.
"We had all of these milestones to make it past, like if she could make it to four months, her chances of SIDS went down. Then seven months, then onto the next big hurdle," Weber said. "I didn't sleep. I would watch her all night and have to rub her chest to stimulate her breathing."
One night, the chest rubs weren't enough.
"She stopped breathing and was turning blue, so I called someone to watch my other kids and rushed her to the hospital." said Weber.
Once Nevaeh was stabilized, the emergency team called in Gov Ari.
"Here I was this terrified and frustrated mom, but Gov Ari was just so nice and kind," said Weber. "He assured me he was going to figure it out."
An exploratory scope showed Nevaeh's adenoids were large for her age. Gov Ari recommended removing them as a first step to figuring out Nevaeh's apnea.
"He's not one to just go in and start taking things out. He wants to start from the least invasive approach and go from there, and I really appreciated that," said Weber.
After Nevaeh's adenoidectomy, studies with the pediatric sleep medicine team revealed she was still experiencing 29 apnea spells per hour. For her age, any apnea score over 10 is considered severe. Gov Ari and Weber decided to move forward with a tonsillectomy to remove Nevaeh's tonsils, which brought her score down to 16.
Weber noticed a difference immediately.
"It didn't completely solve the problem, but it was in the right direction," explained Weber. "She started breathing and sleeping better at night and had so much more energy during the day."
A Team for Hope and Relief
In addition to solving Nevaeh's sleep apnea, doctors were still working to prevent the aspiration and acid reflux she had experienced as a result of the laryngomalacia. She was put on a thickened liquid diet to stop anything from going into her lungs and was being closely monitored by the aerodigestive team — a group of specialists that helps kids with complex airway, lung and digestive conditions and includes ENT surgeons, gastroenterologists, pulmonologists, therapists and dietitians.
"Once I started realizing everything that goes into her diagnosis — her lungs, her belly, breathing and eating — it felt very stressful," Weber said. "I was convinced we'd have to go a bigger city to get the level of care she needed, but all of the specialists were right here, and they've been amazing."
Weber has been equally amazed by Nevaeh's progress. The team's feeding and speech therapists and dietitian have helped Nevaeh build up her way up to eating solids and are working toward non-thickened liquids — a milestone delicately intertwined with the progress on her sleep apnea.
After Nevaeh's tonsillectomy, Gov Ari found there was a small piece of tissue still blocking her airway. Given Nevaeh's condition, the surgery to remove it requires extreme precision to ensure enough tissue is removed to clear her airway, but not too much that it allows her reflux to return and further damage her lungs. Weber is well-aware of the risks.
"Anytime Dr. Gov Ari is going to do something, he brings me back to his office to go over everything in detail and lets me ask as many questions as I want," said Weber. "I'm never rushed, and he makes me feel completely comfortable with the plan. In this case, it's a ‘measure three times, cut once scenario,' but we're ready."
As Weber prepares for Nevaeh's next surgery scheduled shortly after Nevaeh's second birthday, she can't help but think of all of the other parents in her shoes.
"I wish I could talk to every mom who's dealing with this diagnosis to hold their hand," said Weber. "I know how terrifying it is. You think you'll wake up and you won't have your kid anymore. But Nevaeh is here, and I can't thank Dr. Gov Ari and his team enough."