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Back to toddler life after neck surgery

A mysterious growth on toddler Gianna Fuertes’ neck turned out to be a rare type of cyst.

Toddler girl with big blue hair bow, pierced ears and yellow corduroy top.
Nothing stops her now: Post-surgery, Gianna is a happy, active, curious toddler.

When Gianna Fuertes was only a few weeks old, her grandmother noticed a lump on her neck. It was soft to the touch and moved, but it was about the size of a golf ball.

“My mother-in-law asked if I knew what it was, and I had absolutely no idea,” said Nicole, Gianna’s mom. “We tried to Google, but that didn’t go well—it just scared us more. Our pediatrician wasn’t sure what it was either, and referred us to another doctor and then another.”

Without a concrete answer and fearing cancer, Nicole reached out to her parents in despair, who said she should call her sister’s ear, nose and throat doctor. “Our family is close with him—he performed multiple surgeries on my sister starting when she was an infant,” explained Nicole.

As soon as their doctor heard about the problem with Gianna, he told Nicole and her husband, Antonio, who live in Greenlawn, NY, to come in. “He knew the situation was scary, but he wanted to try to get some fluid out of the lump because he thought it would give us more information about what it was,” said Nicole. He performed a fine needle aspiration and told Gianna’s parents that the result—a clear liquid—meant it likely wasn’t cancer, but that they should consult a surgeon.

He recommended that they see Lee Smith, MD, at Cohen Children’s Medical Center. “After all the doctors we’d been to, we were a little skeptical. But Dr. Smith was just an angel. He answered our questions and put us at ease. Every time we came in to see him, he treated Gianna and us like we were family.” Dr. Smith, chief of pediatric otolaryngology at Cohen Children’s, also thought it wasn’t cancer, but recommended an MRI to be sure.

As the family waited for clearer answers, Gianna started to develop some other issues. “At one point, we realized her one eye wasn’t opening, and the pupils in both were totally different sizes,” said Nicole. “We took her to see an ophthalmologist, who diagnosed her with Horner’s syndrome.”

Woman with long dark hair holds toddler girl with a big blue hair bow and yellow corduroy top.
Nicole says her daughter is “catching up” after surgery.

Horner’s syndrome is caused by a disrupted nerve pathway. Dr. Smith said it was possible Gianna’s eye trouble was the result of the lump in her neck putting pressure on the nerves in her neck. This, he said, was another sign that Gianna should have the lump removed, but he wanted to wait a month or two when she would be bigger and the procedure would be safer. The surgery was scheduled for when she was 18 months old.

Dr. Smith told the family he wasn’t sure what he would find, but he would keep the family updated. With him in the operating room was pediatric surgeon and Cohen Children’s Surgeon in Chief, Jose Prince, MD. True to his word, even though the proposed two-hour surgery stretched into more than four hours, Dr. Smith kept sending someone out of the operating room to keep them informed.

“When Dr. Smith finally came out, he said, ‘You are not going to believe this—I just pulled an extra-large hard-boiled egg out of Gianna’s neck,’” recalled Nicole. “He said he didn’t know what it was, but they were going to send it out to the lab and let us know as soon as they did.”

Two weeks later, Dr. Smith learned the growth was a foregut duplication cyst. Remarkably rare, the cyst is a benign anomaly in which a portion of a fetus’ digestive system, such as the esophagus, stomach and part of other organs, duplicate as they’re developing in utero. Dr. Smith told the Fuertes family that there was an esophagus and stomach in the cyst on Gianna’s neck. The good news, Nicole said, is that the entire mass was safely removed and would never recur.

Today, Gianna is a happy, active 20-month-old, and her parents credit Dr. Smith and the team at Northwell for taking wonderful care of the family.

“She wasn’t talking before this thing was removed, and didn’t eat well either,” said Nicole. “A month after having it removed, she started talking, and could drink a whole bottle of milk and sleep through the night. She’s so active, and she’s catching up on all the milestones she missed.”

Toddler girl with big blue hair bow, pierced ears and yellow corduroy top stands outside.
Gianna’s rare, benign cyst had begun to interfere with her vision. She’s seeing clearly now!

After seeing so many different experts and hearing so many opinions, Nicole said having doctors she trusted made all the difference.

“The way they treated us, the way they treated Gianna, they were just amazing,” she said. “This was a long journey, but they made sure we were all taken care of every step of the way.”

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