Bright explosions of red, blue and white sparkles explode on the screen of the electronic device being held by Joy Barton, a child life specialist at Valley Children’s Hospital, every time the tiny fingers of Neymar Mendez touch the screen.
The youngster lets out a big laugh as he makes explosions appear on the screen. After a few more taps, Neymar’s parents — Viviana and Juan Mendez — pull the red wagon that the youngster’s sitting in down a hall in Craycroft Cancer Center to complete the reason for their visit.
Although Neymar has spent much of the nearly two years of his life at the local hospital, the family is visiting on this day to hand out Valentine’s Day treats to the young patients, their families and staff. The Mendez family are this year’s official ambassadors for the hospital.
The Mendezes took on the role because they deeply appreciate all that’s been done for Neymar since the day he was born. The youngster was born with Down syndrome and has many of the medical complications associated with it. He’s already been through surgery to close two holes in his heart and treatment for the rapid growth of white blood cells that, if left untreated, could lead to acute myeloid leukemia.
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“We just thought we would go to the hospital, the baby’s born and the next day or two, we go home a happy family,” Juan said. “But everything changed in a matter of seconds. So we had to change our lives.”
Neymar’s been through a lifetime of medical problems in a short amount of time.
“He’s just a little baby, but if you look at his medical history here, he’s been through so much,” Juan said. “But everyone at the hospital was so nice. They were always there helping with everything.”
Neymar’s not scheduled to see any of the doctors during his candy delivery day, but his cardiologist, Dr. Paolo Aquino, takes advantage of the youngster being at the hospital to give his heart a quick check. The doctor’s happy with what he hears.
“Patients with Down syndrome have a higher chance of having some form of heart problem. It’s estimated about half the babies born with Down syndrome will have some form of heart problem. This is one of the more common types of heart problems,” Aquino said. “Now that the holes have been closed, I would consider his heart to be normal.”
Although everything sounds good with Neymar’s heart, Aquino will continue to monitor him — approximately once a year — until Neymar turns 18. The family makes the trek to the hospital once a month for Neymar to be checked out by the doctors in oncology and every three months for doctors in endocrinology.
The parents look at the visits in a positive light, noting that when Neymar first went home, they had a bag full of medications. That’s down to only one prescription.
The long medical journey to fix his heart, deal with the transient myeloproliferative disorder that was causing his white blood cell problem and all of the other related medical conditions started for the Corcoran couple the moment Neymar was born.
“They did all of the testing when I was pregnant and everything looked normal,” Viviana said. “He turned breech during the delivery, and they had to do an emergency C-section.”
Neymar was immediately transferred from Central Valley General Hospital in Hanford, where he was born, to the neonatal intensive care unit at Valley Children’s Hospital.
Viviana wasn’t able to make the trip with the infant since she was recovering from surgery. Juan was with Neymar as the doctors began to assess his medical condition. Initially, Juan was told Neymar would only have to be in the hospital for seven days but that turned into months as his medical condition became clearer.
“They told us about the Down syndrome as soon as he was born. That he had features of having Down syndrome but they weren’t sure so they were going to do the test,” Juan said. “Then, they told us about his heart.”
Aquino explains that the holes in Neymar’s heart were between the left and right sides and were allowing extra blood into his lungs. If the holes weren’t closed, the child’s lungs would have been damaged. When Neymar was born, he weighed 5 pounds, 3 ounces. Doctors suggested waiting three months so that Neymar would be at least 6 pounds, 3 ounces and big enough to endure the open heart surgery.
As they waited, doctors began to work on Newymar’s other problems: neonatal seizures, hypothyroidism and an enlarged liver.
“It was thing after thing after thing,” Juan said.
The chemotherapy needed to correct the white blood cell problem caused Neymar to lose weight, and he dropped to 4 pounds. The parents moved into the Ronald McDonald House so they could spend as much time with their infant as possible. Viviana was only able to breastfeed through a tube inserted into the baby’s nose.
Both parents praise the hospital staff for all of their work with Neymar and teaching them how to care for him. Neymar could only get nourishment through the feeding tube, and his parents had to learn how to place it and replace it.
“We were so happy when we could stop using the tube because he really didn’t want milk. He wanted solid foods,” Viviana said. “Now he can eat two enchiladas by himself.”
After months at the hospital, Neymar was allowed to go home. Taking care of any baby is demanding, but that work gets magnified when there are additional medical conditions. Neither Juan nor Viviana are complaining. She said that Neymar is teaching them how to value and appreciate life even more.
“Special needs children are truly a blessing,” Viviana said. “Any parent should have faith that there will be good days and bad days, but everything will turn out OK.”
Juan added, “Yes, Neymar has Down syndrome. But to us, he’s just a normal child. He’s so special to us and everybody else. He showed us how to become stronger in every way you can think about. He’s just the strongest little baby we have ever met. He’s always been strong for us, so we have to be strong for him.”