“When Marshall was born, we were told that he was nothing but a perfect, healthy newborn baby. However, when he was about one month old, his breathing grew abnormally noisy. His breathing sounded like a goose – and it would get worse when he was eating or sleeping,” Sydney, Marshall’s mother, said.
Sydney and her husband, Adam, soon decided to take Marshall to their family pediatrician – Dr. Fred Cahan – for further examination. “After we met with him, our pediatrician immediately sent us to Lurie Children’s Outpatient in Lincoln Park to meet with Dr. Dana Thompson, Head of Otolaryngology (ENT) at Lurie Children’s,” Sydney said. “At first, we thought this was just preventative measure until Dr. Thompson diagnosed Marshall with severe laryngomalacia and bilateral lymphatic malformations on his neck.”
Getting a Better Understanding
Laryngomalacia is a birth malformation of the larynx, which is the top of the voice box. It is almost like a flap of skin over the larynx, which makes it harder to breathe. Lymphatic malformations are cyst-like masses that hold excess fluid. Although they do not impair most function, they can affect how a child eats and breathes. In Marshall’s case, he had a lymphatic malformation on both sides of his neck. “Dr. John Maddalozzo, an otolaryngologist at Lurie Children’s, helped me understand how the malformations form by describing the lymphatic system as a fishnet stocking over all your organs. Marshall’s stocking happened to get tangled when he was growing in my belly, which in turn created these cysts,” Sydney said.
“Although these are typically not life-threatening and can be fixed through surgical repairs, doctors were going to continue monitoring him regularly,” Sydney said. “Shortly after testing, Marshall developed trouble eating and began regularly spitting up his food. He wasn’t gaining weight because he was working off all his calories trying to breathe.” Specialists suggested a gastrostomy tube, otherwise known as a G-tube, in order for Marshall to get the nutrients he needed. However, this would require an additional surgery that Sydney and Adam did not want Marshall to endure.
After working with their pediatrician and Lurie Children’s nutritionists to find ways to avoid the G-tube, such as fattening up the milk and using an inhaler filled with steroids to lessen swelling, Marshall finally started to grow. But even with these changes, his noisy breathing did not improve. In addition, his malformations began to look larger. Sydney and Adam worked closely with their otolaryngology (ENT) specialists to develop a surgical game plan. “We decided that the laryngomalacia and one side of the bilateral malformation would be treated first and the other side would be treated afterwards,” Sydney said.
Marshall’s ENT Heroes
When Marshall turned one year old, Dr. Dana Thompson, one of the world’s authorities on laryngomalacia, performed the procedure to correct it. Dr. John Maddalozzo corrected the lymphatic malformation. The second surgery was performed just six months later to remove the other side of the lymphatic malformation. “Lurie Children’s expertise in these two areas allowed us to feel comfortable with the ENT team. We considered our pediatrician and our pediatric otolaryngologists as our quarterbacks – leading us through this whole process. They are fantastic doctors and surgeons, and they saved my son, so I’ll be forever grateful. As a patient at Lurie Children’s, we feel so lucky that Marshall had access to these pediatric ENT specialists. This is especially important because laryngomalacia and lymphatic malformations are often misdiagnosed,” Sydney said.
“We’re still very much a part of the Lurie Children’s family. Marshall still comes for checkups and ultrasounds since reoccurrence is possible with lymphatic cysts and should be monitored,” Sydney said. “Other than perhaps needing his adenoids removed one day, Marshall is thriving and growing at an appropriate pace.”
Marshall is now a healthy four-year-old who is kind, caring and wise beyond his years. “He’s a sensitive soul, but – don’t get me wrong, he’s still a wild and funny kid,” Sydney said. “Although he was young when it happened, I believe his surgeries have shaped him a bit. His love of learning and his love for people seem to be extra strong because of what he’s been through.”