When Luca Zayas was just 2 weeks old, his mom Melissa Moro struggled to get newborn clothes on him because his head was so big. Moro told the pediatrician, who dismissed her concerns as those of a first-time mom. Two weeks later, Luca's head was so large she couldn’t pull toddler clothes over it.
She soon learned why — Luca had a golf ball sized brain tumor causing his head to swell.
“I knew something was wrong,” Moro, 37, of Bay Shore, New York, told TODAY Parents. “I kept telling my husband way before we went to the pediatrician. I was like ‘I think his head is bigger than normal children.’ I’m a nanny. I’ve seen a lot of children from birth to rising ages. Something just feels off.”
Large head and seizures
Moro would mention Luca's head size at doctor’s appointments, but the doctor kept telling her she was overly worried and that Luca was fine. But after he received shots at 2 and a half months, something terrifying happened. Luca couldn’t keep his eyes open and then they rolled downward and started shaking back and forth.
“He ended up having a seizure in my husband’s arms,” she said. “Then two hours later he ended up having another one and we were like, ‘Now we’ve got to take him in (to the hospital) now.”They went to the local hospital where a CT scan was performed on Luca, revealing that he had a mass on his choroid plexus in his brain. Doctors transferred Luca to NYU Langone Hospital for surgery.
“They told us that he needed immediate surgery,” Moro said. “The following day he ended up going into surgery for almost five hours.”
Doctors removed the golf-ball sized choroid plexus papilloma, a slow-growing brain tumor that’s considered benign.
“It’s a very rare brain tumor and it’s not cancerous,” Moro explained. “But it has stages and he has stage 2, which gives it a higher chance of returning.”
Doctors were able to remove all of the tumor, but Luca’s recovery initially didn't go well.
“He ended up having a seizure for almost 45 minutes that required him to go back (into surgery). They couldn’t figure out why he’s having seizures,” she said. “We found out he was having seizures because he ended up having a bleed.”
The next four weeks while Luca was in the pediatric intensive care unit felt overwhelming for the family.
“We cried every single day,” Moro said.
Brain tumor and recovery
The type of brain tumor Luca had accounts for about less than “1% of all brain tumors," Dr. Magdy Shady said. While symptoms of infant and pediatric brain tumors can be varied, sometimes parents notice that their baby’s head is oversized.
“That’s one of the most common things we see and it’s one of the alerts,” Shady, chair of neurosurgery at St. Catherine of Siena Hospital in Smithtown, New York, who wasn’t Luca’s doctor, told TODAY Parents. “In addition to the size of the tumor, you have more fluid being absorbed and sometimes poorly absorbed through the brain and that increases the size of the head.”
Though Shady said some babies just have larger heads and he doesn’t want parents to be unnecessarily worried. Other signs might include:
- Their child sleeps all the time
- Their child has unusual limb movements
Sometimes tumors recur and Luca will need to be followed by a doctor to make sure his doesn’t grow back. So far he’s thriving.
“If the tumor is gone and it doesn’t come back and his shunt is working — or he’s not shunt dependent— he should be fine,” Shady said of Luca. “Young children are so resilient and their brain is so resilient and beyond our imagination. So their brains recovering do really really well.”
Still, the brain tumor and surgery meant that Luca experienced development delays. After he left the hospital he attended physical and occupational therapy to help him.
“He was delayed at hitting milestones. Normal babies would learn how to sit up around three to four months and he learned that at five to six,” Moro explained. “They had told us that he would not be able to walk until he was 5-years-old.”
But thanks to his therapy, Luca has improved dramatically.
“He met a lot of milestones especially within the past few months, just the fact that he started walking was incredible,” Jennifer Zeman, occupational therapist at St. Charles Hospital’s outpatient rehabilitation in Commack, New York, told TODAY Parents. “He’s made a significant amount of progress. In fact, it was somewhat unexpected progress.”
If the tumor doesn’t recur they expect Luca to meet milestones much like his peers.
“As he grows as long as his health is in the right direction as well in terms of his fine and gross motor skills, he’ll continue to achieve those age appropriate milestones,” Nicole Dattilo, physical therapist at St. Charles’s Hospital’s outpatient rehabilitation told TODAY Parents.
Life after a brain tumor
Luca, now 23-months-old, loves saying words, running, throwing balls and drawing with chalk and crayons. He even tried riding a tricycle recently. He still needs to undergo regular MRIs to make sure the tumor hasn't regrown and takes medication to control his seizures. Seeing him play brings great joy to the family.
“It’s a blessing,” Moro said.
She wanted to share Luca’s experience to encourage parents who feel like something’s wrong with their child to seek help.
“There are symptoms that the pediatrician has ended up missing like the increase in the head size or the swollen fontanelle,” she said. “Go get it checked out. Go ask, even if it’s nothing. Don’t wait, it could cost the life of your child.”