Hear me roar: A mother hunts down answers for her son

If it’s true that raising boys is not for the fainthearted, then Nicole Laws is truly lionhearted. A nurturer and a protector, beautiful and strong, this mother of four boys will hunt down the best solution to a problem … no matter what stands in her way.

Mason was born on Jan. 28, 2011, in Syracuse, New York. A month premature, he struggled with eating and breathing, but Nicole wasn’t overly worried. “This was our fourth child. The first three had reflux, so I was thinking, ‘This will be a piece of cake!’” Mason was observed for a few days at the local hospital and sent home.

Unfortunately, Mason’s issues persisted. Nicole and her husband Cliff had to hold their son in just the right position and give him frequent breaks to feed him. Sleeping was a struggle, to say the least. “Mason couldn’t tolerate laying flat,” remembers Nicole. “He would sleep on top of me sitting in a chair — all night long.”

We wouldn’t be where we are now if I didn’t push hard for answers and say ‘no’ when I felt something wasn’t right. ~ Nicole, Mason’s mom

Searching for answers and being willing to say ‘no’

Every time Nicole consulted a local specialist with her concerns, she was told it was reflux. As an experienced mom, she knew it wasn’t that simple. Feeding was much more difficult for Mason than it was for her other boys — he coughed more, he choked more, he projectile vomited.

When Mason was two months old, Nicole consulted a local otolaryngologist. He diagnosed Mason with mild laryngomalacia — a birth defect in the voice box — and asked the family to come back in a few months if things didn’t improve.

Every day that passed was excruciating.

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Follow-ups with Mason’s doctors were inconclusive, and Mason was still not thriving. He wasn’t gaining weight, and he caught one severe cold after another.

And after eight months of sleeping in a chair, Nicole was exhausted. Hoping to finally get some sleep, she nervously transferred Mason to a crib but not before buying a breathing monitor for under his mattress.

The alarm sounded often, indicating Mason wasn’t breathing. Nicole would rush into his room and hold him upright, until he started breathing regularly again. “I was terrified I’d wake up one morning, and he wouldn’t be alive,” she says.

It was time to push for more answers.

Nicole took Mason to a local gastroenterologist, who thought he saw esophagitis, an inflammation of the esophagus. He recommended starting Mason on swallowed inhaled steroid therapy. “I wasn’t comfortable giving my son what was essentially a slurry of liquid steroids and Splenda, especially when it wasn’t even a confirmed diagnosis,” she says.

Increasingly frustrated by having to navigate through a sea of specialists, each with different opinions, and none of them collaborating to care for Mason, Nicole consulted with her pediatrician, Dr. Michael Soeder of Brighton Hill Pediatrics.

Seeking a second opinion from Boston Children’s

“Sometimes as mothers, we’re told that we’re overthinking something,” says Nicole. “Friends, family members and even doctors made me feel like I was seeing the glass half empty.”

But from the very beginning, Soeder listened to Nicole. He took her concerns about Mason seriously, exhausting every resource he had to find answers.

“We were trying to piece together his care here in Syracuse,” recalls Soeder. “But when we started getting differing opinions about what to do and how to do it, we decided it was time to get a strong second opinion from Boston Children’s Hospital. I knew the specialists and sub-specialists would sit down in a room and come up with a game plan.”

With someone as complex as Mason, the team approach is so valuable. ~ Dr. Michael Soeder, pediatrician

Mason was a year and a half when Soeder referred him to the Boston Children’s Center for Airway Disorders (CAD), which brings together otolaryngologists, gastroenterologists, pulmonologists and other specialists to treat children with complex-airway disorders.

Bringing together a multidisciplinary team provides answers

The Laws family arranged for care for their older three sons and drove with Mason to Boston — the first of many trips. After a few initial appointments, they came back for a triple endoscopy or “triple scope” — a procedure that allows for multiple specialists to evaluate a patient’s larynx, bronchi and esophagus simultaneously, so the child doesn’t have to undergo anesthesia multiple times.

The triple scope revealed Mason had been born with a laryngeal cleft, an extremely rare opening between the larynx and the esophagus that causes food and liquid to pass through the larynx into the lungs. “No one in my life had ever heard of a laryngeal cleft,” says Nicole. “It was scary and extremely overwhelming but also validating to know we had an answer.”

Nicole went hunting for information right away. She found almost nothing, except research studies written by Dr. Reza Rahbar, associate otolaryngologist-in-chief at Boston Children’s — confirmation she had landed in the right place.

When Mason was 2 and a half, Rahbar performed endoscopic surgery to repair the cleft. Although surgery was not a complete fix, Nicole did notice a difference in Mason’s symptoms. His major choking episodes became less severe. Over time, they occurred less often, going from multiple times a day to a few times a week.

Because of Mason’s persistent infections and breathing issues, pulmonologist Dr. Umakanth Khatwa suggested a full workup on Mason’s respiratory and immune system. That’s when the Laws family received their second answer: Mason had a rare immune deficiency called hypogammaglobulinemia, which explained why he was so frequently very sick. Mason likely will not outgrow this condition and needs IV infusions every three weeks of gamma globulin (IgG), which gives his body the essential antibodies to fight infections.

Looking ahead

Now five years old, Mason loves preschool, playing with (and antagonizing) his older brothers and anything involving construction or fire trucks.

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He receives IgG infusions at home and occupational, physical, feeding and speech therapy — in Syracuse. Every three to six months, he and his parents make the trip to Boston Children’s to see several of his nine specialists.

“The long drive to Boston actually ended up being a convenience for the Laws family,” says Soeder, who still serves as the family’s medical home base. “Mason can be seen by all of his many specialists in just a few days. That would be impossible in Syracuse.”

At a recent appointment with immunologist Dr. John Lee, Mason and his parents are comfortable enough with the routine to really enjoy their special time together. “We’re seeing [specialists in] immunology, cardiology, nephrology, pulmonary and neurology on this trip,” says Nicole. Other visits include gastroenterologist Dr. Rachel Rosen. “It’s really a team effort to figure out the root of Mason’s issues.”

Dr. John Lee and Mason
Dr. John Lee and Mason

“There was a time I thought I was going crazy,” reflects Nicole. “But I have been validated in every effort I have made on Mason’s behalf. We wouldn’t be where we are now if I just listened to every doctor. It’s my job to push hard for answers and say ‘no’ when I feel something isn’t right. He can’t speak for himself. I have to fight with every ounce of my being for him.”

Learn more about Boston Children’s Center for Airway Disorders.