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HOME	CLASSIFIEDS	OBITUARIES	SPORTS	OPINION

Thursday, July 20, 2006

Boy Awaits Organ Donation

By Matt Gomez
Mountain View Telegraph
    Four-year-old Jakob Schneller knows he needs a new heart.
    Since he was an infant, he's had to deal with regular doctor's visits, shots, blood tests and a heart that is progressively getting weaker.
    On the day Jakob turned one month old, his parents, Chris and Gloria Schneller of Tijeras, noticed that Jakob was taking quick and shallow breaths. They rushed him to the emergency room, where they were later told that his heart had expanded to fill almost his entire chest, causing both lungs to collapse.

Click to enlarge

    An extra electrical connection in his heart was making the muscle beat extremely rapidly, spiking at about 300 beats per minute.
    A normal child's heartbeat should be closer to 150, Chris said.
    His rapidly beating heart meant that more blood was coming in than going out, causing it to expand, Gloria said.
    Jakob suffered from Wolff-Parkinson-White Syndrome, in which an extra electrical pathway in his heart could at times cause the muscle to beat much faster than normal.
    A recent nonsurgical procedure in January successfully took care of the Wolff-Parkinson-White Syndrome, but Jakob still suffers from cardiomyopathy, a disease that is making his heart get weaker over time instead of strengthening like it should, Chris and Gloria said.
    Gloria and her 19-month-old son, Alex, moved last weekend to Denver with Jakob, where he will be listed as needing a heart transplant, Gloria said.
    Jakob will visit The Children's Hospital— one of the top facilities in the country for children's heart medicine, Gloria said.
    Because Jakob needs a heart transplant, they can't live more than an hour away from the hospital, Chris said.
    Once a heart becomes available, it is crucial that it be transplanted as soon as possible, Gloria said, so any deterioration in the donor heart can be reduced.
    Chris, the couple's 7-year-old son, Karl, and their 17-year-old son, Adam, will continue living in the family home in Tijeras while Jakob and the rest of the family wait in Denver for a heart to become available.
    On the outside, Jakob looks just like a normal 4-year-old boy— about 3-feet tall, brown hair, bright eyes and an innocent smile.
    "I like dinosaurs," Jakob said excitedly when asked what kinds of things he likes. "I even like soldiers and tanks and fighter jets and dinosaurs and snakes, and I even like reptiles and one more thing— I like animals."
    "He wants to grow up to be a T-rex," Gloria said, just after Jakob finished describing a dream he had where he was riding on one of the prehistoric creatures.
    He likes macaroni and cheese, chicken nuggets, grilled cheese sandwiches and pizza, among other foods, he exclaimed.
    "One of the (medications) that we just took him off in the last couple of months was an appetite suppressant, so he's one of the smaller kids in the class because sometimes it would seem his whole meal was a bunch of (medications)," Chris said. "Once we took him off, we noticed within three to four days he was a chow hound again."
    Jakob's mother asked him if he missed seeing his teachers and friends at Prince of Peace Lutheran School. He quietly responded, "Yes."
    Jakob was taken out of his classes to minimize the chances of him catching an illness, Gloria said. If he got sick, that could mean his wait for a new heart could be extended, she explained.
    The Schneller family has been approached by faculty and other parents from Prince of Peace, asking about Jakob and seeing what they could do to help the family, Chris and Gloria said. Some of the families were strangers.
    "They've been really great," Chris said.
    The family's friends and neighbors have also been a great help— donating their time to help watch the family's house and children when different situations arise.
    More recently, friends of the Schnellers have helped out by giving the family furniture for their apartment in Denver, Gloria said.
    Gloria said living with their son's condition has been rough.
    "I try not to think about it," Gloria said. "I take it one appointment at a time. The other kids help, too, they keep me busy, keep my brain occupied."
    Emotional troubles aren't the only difficulties the family is facing, though.
    Although the family has health insurance, all of the extraneous expenses associated with Jakob's health problems— like the $2,000 Automated External Defibrillator the family purchased— have stretched the family's budget thin, Chris and Gloria said. They've had to start pulling money from their retirement fund to help.
    After they move to Denver, Gloria said, she expects that it will take about one to three months for a donor heart to become available.
    Doctors have told her that Jakob's age and the fact that his heart is larger than average for his age will mean that he will be facing less competition for a new heart, she said. Jakob should be able to accept a donor heart from a child ranging from 4 to 7 years old, Gloria said.
    Even after a transplant has been completed, the family will have to wait in Denver at least another three months while doctors make sure Jakob's body doesn't reject the heart, Gloria said. If it is rejected, the family will have to start waiting for another heart.
    Chris said he feels too stubborn to ask for help but admitted that, financially, things haven't been the easiest.
    "I would ask for something— prayers," Gloria said. "What better thing to get and it's free."