For one North Bergen child, life has been a series of obstacles, but he has overcome them even when the odds were against him.
Martha Gonzalez knew when she was four months pregnant that her son would be born with a heart defect. Two days after he was born on Dec. 3, 2005, Daniel underwent open heart surgery at Columbia Presbyterian Hospital and his heart was successfully repaired.
However, a few days later, he was diagnosed with the rare disease “Biliary Atresia,” a form of liver cirrhosis in infants. Daniel, now 4 years old, had a liver transplant when he was 6 months old at the Children’s Hospital of Philadelphia.
During her free time, she fundraises for PH.
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According to the Pulmonary Hypertension Association, children with PH have unusually small blood vessels from their heart to the lungs, causing high pressure in their lungs. This causes their hearts to beat harder to pump blood through their lungs to pick up oxygen.
Children with this rare disorder often find themselves tired and out of breath.
“As a mother I was devastated to hear the words ‘incurable,’ ” said Gonzalez, who explained that the disease may have been brought on by Daniel’s liver transplant. “We already thought that we were going to have a semi-normal life. He was given a transplant and he was given that opportunity to live a normal life again.”
More medications
After being diagnosed with PH Phase I, his doctor prescribed him with a controversial medicine Revatio, better known as Viagra, in addition to the medication he takes for his liver.
Gonzalez said they were initially alarmed that their 1-year-old would take such an “adult” medication three times a day, but it was the only thing Daniel could take at his age.
“It has prevented it from progressing,” said Gonzalez.
Everyday struggles
An everyday cold for Daniel could become much more serious than for his peers.
Gonzalez said that they use antibacterial hand sanitizer constantly to prevent germs from spreading. They also monitor his oxygen levels.
When he does get sick, he can only take plain Robitussin. Any other medication could negatively affect his liver.
“A simple cold could turn into pneumonia if we don’t work on it right away,” said Gonzalez.
Carlos Gonzalez said that they try and keep the same germ-free regimen with their daughter Mia, 2, but that colds inevitably happen.
A cold for Mia could last for a week, while for Daniel it could remain well over a month, said Carlos.
“If he has a fever of 105 and doesn’t have a cold, we have to go to the hospital to rule out that he doesn’t have a rejection from his liver transplant,” said Gonzalez. “If he has a cold and he has a fever, then we also worry, because then his heart is working hard and we have to monitor his oxygen at all times.”
She said that Daniel is also becoming aware of his disease.
“When he feels congested and he can’t breathe, he’ll tell me, ‘I’m sick,’” said Gonzalez.
A normal kid
After he had surgery this past August to repair one of his heart valves, Daniel never returned to pre-kindergarten in the North Bergen School District because of the prevalence of the H1N1 Virus.
Gonzalez hopes that as her son gets older he will build up antibodies and return to school, but for the time being, the North Bergen Board of Education sends an occupational, physical and speech therapist, along with a teacher who comes every weekday for two hours.
“He’s been given the opportunity to be at the same level as other students,” said Gonzalez, who said that her family is grateful to the district.
Having fun
Daniel also enjoys SpongeBob SquarePants, drawing, and dancing while his sister Mia sings.
Carlos said that they often go to malls as a family during the week and travel to different state parks when the weather is warm.
Daniel also visited Walt Disney World in Orlando, Fla. for a week. Magic Kingdom was his favorite park.
Gonzalez said that sometimes they have to favor Daniel over Mia just because his crying could damage his heart, which becomes hard for her.
Their son Sergio, 17, also is unable to bring his friends over before she makes sure that they haven’t been sick.
Still, they see Daniel’s condition as something that pulled their family together.
“We do things together now,” said Gonazlez. “It’s better now. He brought us true happiness. Before, we were more superficial.”
Thankful for charity
More than anything, the Gonzalez family said that they want to bring awareness to PH, since it is often misdiagnosed as Asthma.
Gonzalez also was awarded a scholarship by the Pulmonary Hypertension Association to attend a three-day seminar in California this June about the disorder. She applied for three years before being accepted.
During her free time, she fundraises for PH.
Carlos said that once when Daniel had to go to the Children’s Hospital of Philadelphia, they were notified that they could stay at the McDonald’s House for free because they lived two hours away.
“I mean you go to McDonald’s and you see those boxes in front of the register and you see those kids’ faces, so you put money in,” said Carlos, who explained that a dollar donation really does make a difference. “To find that and see how other people volunteered to help families in these kinds of situations, we have to give money.”
Tricia Tirella may be reached at TriciaT@hudsonreporter.com.