Faces of Liver Disease
Sharing your experience can provide hope and comfort to others in the liver community.
"Ladies and gentlemen, what you are about to experience is like no other…" So booms the announcer's introduction to DJ Little Matt.
Oh yes, wait a minute Mr. Postman, the iconic chorus loops once, twice, three times then gives way to the equally recognizable groove of Ton Loc's classic hip hop track Wild Thing. The back and forth continues for the next three minutes and when it's done, you won't ever think of either song the same way again. Perhaps, the announcer is onto something.
"Ladies and gentlemen…" Nineteen year-old Matt Rosiello loves music.
In September 1989, Randy and Ken Rosiello were carrying their five-week-old son, Matthew, out of the church after his baptism. A woman whom they had never met before stopped them to say that their baby was beautiful, but that he "looked yellow." Randy and Ken didn't understand, but something told them to take little Matt to his pediatrician the next day.
Dr. Burton Banner of Staten Island instantly recognized Matthew's jaundice as the indication of a possibly serious condition. He sent the Rosiellos to Staten Island University Hospital for immediate blood work. He suspected that Matthew had Biliary Atresia; a life threatening liver condition in which the network of tubes and ducts that carries bile from the liver into the small intestines is damaged or missing. The results supported his suspicion. Biliary Atresia occurs only in newborns and is most successfully treated when diagnosed prior to 8 weeks of age. With no time to waste, Dr. Banner sent the Rosiellos to a liver specialist that same day.
Dr. Keith Benkov, a pediatric gastroenterologist, met the Rosiellos at Mt. Sinai Hospital in New York. Matthew was admitted immediately and testing began.
The most conclusive test involved tracking the movement of a special dye through Matthew's liver. In a healthy situation, the dye travels through the liver and is seen in the small intestine. The dye in Matthew's system stopped in the liver.
"I remember it like it was yesterday," says Randy,"Dr. Keith, as we began to call him, sat us down and gave us the news: ‘Matthew is a very sick little baby. He has Biliary Atresia. One in every ten thousand babies gets it. Matthew needs to have major surgery to help him live.' I screamed, ‘Please don't let my baby die!' He hugged me and promised that he would do everything in his power to help him."
The next day Dr. Steven Dolgin entered the Rosiellos' lives. He was the surgeon who would perform the lifesaving and, at the time, recently developed Kasai procedure on Matt. In a Kasai procedure the atretic bile ducts outside the liver are removed and a piece of the small intestine is attached directly to the liver in the spot where the bile is expected to drain. "This procedure reportedly doesn't work at all in 25 percent of babies with Biliary Atresia, and the other 75 percent end up needing liver transplants anyway" says Dr. Dolgin.
"Where's my baby?" Five year-old Jason Rosiello adamantly questioned his parents.
"'What do you mean? I asked him," laughs Randy as she relates the story of how Matt's older brother Jason was the one who talked she and Ken into trying for another child.
"He pushed us into our bedroom and closed the door. Ken and I laughed and said ‘What do you think?' I said ‘Let's have another baby. ‘Yes!' he said. We came out of the bedroom to tell Jason and he started to cry ‘I want my baby!' He didn't quite understand how that sort of thing worked. They explained the timeline to him and began to laugh and dance.
"I should have known that there was something very special going on at that moment. It was Jason's baby."
While Jason's baby lay on the operating table and later in the Pediatric Intensive Care Unit (PICU), Randy and Ken spent hours soul searching, praying, crying and ultimately finding strength in each others vulnerability.
"This disease either pulls you apart as a couple or brings you much closer. We were blessed with the together part," Randy reflects gently.
The surgery was a success judging by the room full of grown men and women jumping for joy, laughing, and kissing when baby Matthew finally passed gas for the first time.
Dr. Dolgin explained to the Rosiellos that because air goes in through the mouth and nose and down around the stomach and bowel until it comes out the other end, passing gas was a sign that the surgery was successful. "I was never so happy that my son had farted," Randy says with a laugh.
Matthew's surgery was a success, but the hard part of the Rosiellos' journey was just beginning.
For the next two years, Matthew was in and out of the hospital due to complications and infections. Matthew's childhood can be traced by his "battle scars" as Randy calls them: a circular scar in the middle of his chest from a broviac tube that was needed at two years of age, a lateral scar running the width of his stomach from the Kasai operation, one scar on each side of his belly from drainage tubes after surgery and a scar on his upper right chest from a port-a-cath for vein access, since no veins were accessible after so many infections/IV treatments. When asked about the scars today, Matt comments nonchalantly, "I don't think about them. They are like my fingers and toes."
Matt has spent much of his life in and out of hospitals, including an emergency surgery last year when a part of his bowel developed an obstruction that required an intense modification of his original Kasai procedure. "This surgery took over eight hours and three doctors to complete," says Randy.
It was during one of their hospitals visits that the Rosiellos discovered the American Liver Foundation. "I was at a loss as I lay next to Matthew in the hospital room, Randy says. "I couldn't do anything at all, so I got on my computer and- ta-da! there you were.
The Rosiellos are very involved with their local ALF chapter. "Matt wants to help people who need someone to talk to about liver disease or B.A. Ken and I want to support other families that have been diagnosed with what we have been through," says Randy who recently started a support group for mothers of children with Biliary Atresia.
Matthew also aspires to do support group volunteering so he can share his story with other families and give back some of what he has learned and been through over the years. He says, "this story can show the rest of the world how to live with a disease, and people can see how I am happy with what I have and who I am."
In the medical community of liver specialists, Matt is already well known. He is one of the very few BA patients who has lived this far into young adulthood with out a liver transplant. He credits his amazing team of doctors and nurses throughout the years for making this possible: Dr. Burton Banner for continuing to be a great care giver for over 19 years; Dr. Charles Patterino who "understands the complexity of my situation and always takes care of me"; Dr. Steven Dolgin for "gifted hands in helping to save my life;" the "incredible care the nurses have given me every time I'm in the hospital at Mt. Sinai"; Dr. Keith Benkov one of Matt's heroes for whom "words are never enough;" and most recently Dr. Peter Midulla, "an all around great person" who has been welcomed into the Rosiello fold as the physician who performed the emergency bowel surgery on Matt last year.
A typical breakfast for Matthew consists of Pillsbury rolls, hot chocolate and the daily doses of the medicines that he has consistently taken to combat nineteen years of common complications from the surgery that saved his life. He takes an antibiotic which combats the constant threat of ascending cholangitis, the primary complication of the Kasai procedure. Cholangitis refers to inflammation and infection of the bile ducts in which bacteria from the small intestine move upward into the liver. Other medications include ursodiol which binds bile in the liver so that an excess of it does not damage the liver and surrounding organs and esomeprazple (Nexium) which addresses bile reflux to prevent esophagitis.
Having long ago accepted that he will probably be taking medications every morning for the rest of his life, Matt doesn't give much thought to them. For Matt, the most important tasks of the morning are "picking out the special music I want to work with for the day and checking and sending e-mails for networking with other DJs."
Matt's interest in music began to grow at the age of 15. Only four years later, he is a professional DJ with his own mixing equipment and fledgling music production business. This he does in addition to his part-time job at a neighborhood pharmacy and his full-time status as a student at the College of Staten Island where he is studying Business Communication and is expected to graduate in 2012. He had a regular radio show on the college station. With all gratitude and respect, however, Matt admits that he was "ready for something bigger." He wants to get his unique mixes and mash ups out to a larger audience.
Matt's most recent surgery was no small success. But it has reminded the family of the looming inevitability of what Matt has managed to avoid for the past nineteen years: a liver transplant.
Each member of the Rosiello family has their specific fears around this issue:
"When my brother suffers, we all suffer," says Jason, Matt's older brother and best friend. "One of my biggest fears is that my brother will get sick again because I worry how he will deal with all of the stuff that goes into that."
As a father and provider, Ken speaks of his greatest worry "that Matt always needs to have the best possible care which means making sure that I always have great, not good, medical insurance coverage." This concern has shaped major decisions in his life and is not made easier by the prospect of Matt undergoing another major surgery, especially a transplant.
"It's always tough to go through that as a father. I'm scared to death but I have to be strong enough for everyone," Ken admits.
Randy expresses the same worries, "I am scared to have my son face another major surgery. As a mother all I want is for my son to be healthy and happy and live a long life."
How does Matt feel about the prospect of a liver transplant in the future? "I'm terrified," he honestly answers, "it scares me to think about a liver transplant because there are no guarantees that it will work, or that I won't die. I don't want to get very sick before I can be transplanted. I also worry about my body rejecting it and having to get another transplant some day,"
"I want to get a tattoo on my arm that says ‘Fighter'," he continues, "because I've been fighting all my life and that way if- when- I am in the hospital again for whatever reason, I can look down at my arm and be reminded to get up and keep fighting."
When and if the day comes that Matt needs a liver transplant, he and his family will have a community of friends in the American Liver Foundation to support them. This June, the Rosiello family will participate in the Greater New York Division's Liver Life Walk which takes place in Liberty State Park in Jersey City, N.J. The event will help raise money and awareness for people living with liver disease.
For the Rosiellos, this is an opportunity to share with others the help and hope that they have received through ALF. "We can't thank the American Liver Foundation enough, Randy says. "The ALF is like a bright ray of sunshine in our lives."