Harper is “A New Child” After Lymphatic Malformation Removal

October 23, 2019

What seemed like a typical tumble for fifteen month old Harper, revealed a larger concern for her parents, as they discovered a marble-sized bump on her neck. At first glance, it appeared to be a pulled muscle. Over time, however, it continued to grow to the size of a golf ball.

Multiple professionals assumed that Harper’s bump was just a swollen lymph node, prescribing antibiotics, along with consistent use of acetaminophen and ibuprofen. As Harper stopped sleeping and eating normally, however, she was evaluated by a local physician in central Illinois, who referred the family to an ear, nose, and throat specialist (ENT) – where they had to wait six weeks for an MRI, learning then that Harper had a lymphatic malformation, a fluid-filled mass on the back of her neck and head. She was suffering from recurrent infection of the lesion.

It was then that the family was referred to a specialist, John Maddalozzo, MD, Attending Physician of Otolaryngology - Head and Neck Surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago. While the family lived three hours away, the distance was “not an inconvenience,” said Harper’s mom, as they were willing to commute to receive the care they needed.

Restoring Hope

Prior to meeting Dr. Maddalozzo, the family felt hopeless, as there were few resources about Harper’s condition online and local doctors had deemed it untreatable. However, Dr. Maddalozzo, with more than twenty years of experience treating the condition, quickly developed a treatment plan for Harper. During treatment for the initial lesion, a second lesion in the parotid gland (salivary gland) was also discovered, though it was not causing problems.

Throughout the entire experience, the family was happy that they “had come to Chicago and to Lurie Children’s,” said Heather. “This was something that only Dr. Maddalozzo could’ve taken care of.”

Multiple Procedures

A month following their first visit, Dr. Maddalozzo removed the initial lymphatic malformation. The procedure ended up being more involved than the imaging showed. Post-surgery a slight drooping of the upper eyelid and contracting of the pupil developed -- a very mild case of Horner’s syndrome – but resolved itself over several weeks.

Separately, Harper was also diagnosed with an ear disease in her middle ear and required ear tubes.

In addition, through the MRIs, Dr. Maddalozzo also found a Chiari Malformation in Harper’s brain, with her tissue expanding into the spinal canal. She was then seen by Dr. Tord Alden, a neurosurgeon at Lurie Children’s, who ordered thorough imaging and then gave Dr. Maddalozzo the go-ahead to safely remove the new lymphatic malformation. With multiple conditions, Heather questioned, “Is she ever going to be able to play, tumble or spin?”

Dr. Maddalozzo proceeded with removing the second lymphatic malformation, scar tissue from the recurrent infection, and her parotid gland, reassuring them that Harper would experience no nerve damage, as this required dissection of the facial nerve. The surgery was a success, with Harper recovering quickly. There was no damage to her facial nerve.

A New Quality of Life

Only a month from her most recent procedure, Harper’s speech pathologist and physical therapist have already noticed an acceleration in her gross motor skills development and the clarity in her speech. Harper has been talking more, confidently playing with her peers, and is happier and more cooperative than ever. “We’ve never seen her be a normal toddler like this before,” said Heather. “There are not a lot of stories with happy endings. We are over the moon with Dr. Maddalozzo and Lurie Children’s.”