JANUARY 1995
Sharyn Alhstrom, Melissa's mother, had an uneventful pregnancy, but went into premature labor 6 weeks before her due date. The doctor sent her home for 3 weeks of bed rest, where she shortly went into labor again. Her daughter, Melissa Sue, was born on June 15, 1978 at 6 pounds, 4 ounces. Melissa became jaundiced almost immediately. At the young age of 10 days old, after Melissa's bilirubin would not decrease, she was taken by ambulance to a special hospital where she underwent 4 long days of tests. At the conclusion of those tests, Sharyn and her husband, Ron, were told their baby girl had biliary atresia. Sharyn and Ron had no idea how serious biliary atresia was. They only knew what the doctors told them. The doctors assured them that a Kasai Procedure was the answer. A liver transplant was never mentioned or discussed with the Alhstroms. Sharyn says, "I'm sure the doctors told us how serious biliary atresia was, but I had made up my mind that the Kasai was going to work."
Looking back now, Sharyn wishes she could have spoken with other families going through similar situations when her daughter was diagnosed. "It's very different now, " she explains. "When Melissa was diagnosed, the doctors didn't put us into contact with other families as they do now. There was no network of families or support." The Alhstroms returned 2 weeks later, and at the age of 4 1/2 weeks old, their daughter went into surgery for an Open Kasai procedure.
Melissa produced bile almost immediately after her Kasai and was sent home with a stoma, an opening in her abdomen where the intestines drain bile into a bag. During the first 6 months after the Kasai, Melissa continually became dehydrated and weighed only 10 pounds. Doctors attributed her constant dehydration to the bile salts that stuck to the lining of the ostomy bag. This was corrected by supplementing her diet with salt. At the age of 12 months, Melissa was doing well; she had no dehydration problems and she weighed 24 pounds. At 18 months, Melissa had her first and only bout of cholangitis. It took the doctors 4 days to diagnose it, but as soon as they did, she was hospitalized with IV treatments for 10 days and sent home.
The Alhstroms then faced "the terrible twos"...weaning Melissa off bottles and pampers and every other normal event one would experience raising a toddler. The difference in the Ahlstroms' life, however, was that their toddler required additional care for her stoma. By the time Melissa was 2 1/2 years old, Sharyn was draining 1,000 ccs of bile out of the stoma daily, which needed to be replaced via a feeding tube. This task took her between 3 and 4 hours a day. The stoma and its care had become a part of her daily routine and became, as Sharyn describes it, "almost unmanageable."
It was during this time, Sharyn says, that all her friends were preparing to enroll their children in nursery school 2 mornings a week. Since the day Melissa was diagnosed, Sharyn recalls always wanting her to live a normal life. "It was one of the most important things to me," she says. "I wanted Melissa to go to nursery school with her friends, but I knew the open Kasai would have to be reversed before that could happen." Sharyn arranged a meeting with Melissa's doctors, and simply told them, "Come on guys. This is enough!" The doctors agreed...it was time to close up the stoma.
That fall, Melissa began nursery school just as any other typical 3 year old. At the age of 4, Melissa went to nursery school 3 mornings a week, just as any typical 4 year old. And at the age of 5, Melissa began kindergarten, just as all 5 year old children do.
Today, Melissa is 16 years old, and her mother says, "She's a survivor!" She has not yet needed a liver transplant. Her liver function tests are all normal. As for how she deals with the fact that she has biliary atresia, "Melissa doesn't discuss it much," her mother says. "in fact, many of her friends don't even know Melissa was ever sick."
When asked how she feels about having a liver transplant some day, one second Melissa feels certain she'd undergo a transplant, while the next, she says she absolutely would not.
Sharyn says, "Certainly, a transplant is always in the back of my mind. I try to think positive, but I know there is no cure for biliary atresia. I don't believe that the Kasai cured Melissa. It was just right for her then. Maybe Melissa will never need a transplant. We've been lucky so far. If she does, we'll face that if and when the day comes. I do believe that medical technology is advancing at a tremendous rate, and if the day does come, we'll know so much more about the disease and transplants in general." She continues, "...Look, even at 5 to 6 years ago. Living related donor transplants were nonexistent. No one had ever heard of them. Now they've become another option. Look what's going on over on the east coast. Doctors are doing studies on weaning children and adults off anti-rejection drugs. Medical technology continues to advance and every year we're further ahead." "So, yes," Sharyn remarks, "a liver transplant is always in the back of my mind, but I don't dwell on it. Once a year we go for blood work, and the lab results have been perfect so far."
Occasionally, Melissa joins her mother to visit a family of a child with biliary atresia. Sharyn feels that by seeing proof of positive success in Melissa, other families may benefit by approaching the disease the way she did. "You've got to have the right attitude," she says. "You've just got to focus on the positive, and be strong."
Sharyn decided early on that she was not going to let Melissa die. Doctors attribute Melissa's success today in part to her mother's positive attitude, strong will, and determination.
by Kelly Hickey; Washington, NJ
Near shady wall a rose once grew, budded and blossomed in God's free light, watered and fed by morning dew, shedding its sweetness day and night. As it grew and blossomed fair and tall, slowly rising to loftier height, it came to a crevice in the wall through which there shone a beam of light. Onward it crept with added strength with never a thought of fear or pride. It followed the light through the crevice's length and unfolded itself on the other side. The light, the dew, the broadening view were found the same as they were before. And it lost itself in beauties new, breathing its fragrance more and more. Shall claim of death cause us to grieve and make our courage faint and fall? Nay! Let us faith and hope receive the rose still grows beyond the wall, scattering fragrance far and wide, just as it did in days of yore, just as it did on the other side, just as it will forever more.In last month's issue, we asked you to keep the Guzmans in your prayers. Their 14 month old daughter, Melanie, was having difficulties after her recent liver transplant (10/20/94). Sadly, we lost Melanie 3 days before Christmas. She will always be remembered. Melanie is the 1st child we've lost since the inception of The Biliary Tree (April 1994). A standing heart of pink and white flowers were sent to the funeral home and a rocking chair with the engraving "In Memory of Melanie Guzman...our littlest angel" will be donated to the ICU at the transplant center where she spent her last days. These gifts were given in the name of "The Families of The Biliary Tree." May Rob, Stacy and Gregory Guzman be comforted by the many heartfelt thoughts of others and strengthened by the many precious memories of Melanie. Please continue to remember the Guzman Family in your prayers.
Lisa Offik of Concord Twp., OH offers the following in response to post-transplant fluctuations in liver function tests: (Volume 6, September 1994) "My daughter, Michelle (6 years post-transplant), is very stable now, but fluctuations in her lab tests were very common for the 1st year or 2 after transplantation (at 8 months of age). As she grew, it took time to adjust her doses of medications and get them just right. Other factors that helped included increased activity level, diet, and keeping to a strict time schedule while giving medications. It will take time for these kinks to work themselves out but the best general indicators were Michelle's appearance and her activity level. Also, we never hesitated to call the doctor with any questions (sometimes 2 to 3 times per week)."
Christy Vines of Abilene, TX writes, "Our son, Zachary, is now 4 1/2 years old (and 4 years post-transplant). He currently weighs 32 pounds and is 40 inches in height (equivalent to 10% in weight and 25% in height for his age group) and is a finicky eater. After his Kasai Procedure, doctors placed a GI tube into his stomach for feedings. We gave him a few bottles throughout the day, but most of his nutrition came from the tube feedings. He was fed this way for almost 5 months. After his liver transplant, the GI tube was removed, and he received all nutrition from baby formula. Because Zachary refused to eat any baby foods we tried to give him, we contacted our local rehabilitation center. We learned that Zachary had a gag reflex. Treatment began by forcing baby food into his mouth and making him swallow it. He overcame the gag reflex, and gradually began to eat. However, his selection of foods is still slim. Does anyone have any helpful suggestions to encourage Zachary to try new foods?"
Editor's Note: If you have a question or a response to another parent's dilemma, please write us at The Biliary Tree.
Health Care Professionals: If you know of any Spanish speaking families who have children with biliary atresia (pre- or post-transplant), please send us their names and addresses. Let them receive the benefits so many of our families already do!
Kiley Baker..................1 year
Kyle Flynn...................1 year
Nia Young...................1 year
Shannon Hickey..........4 years
John Hoffman.............11 years
Welcome to our new children of The Biliary Tree: Anna Burks, Jesse Ernst, Stephanie Fisher, Dylan Harper, Randy Klocek, Marisa McFate, Garrett Page, Baylon Semrau and Colton Sinning.
If you have any news, whether it be a baby's 1st milestone, a update on a child's health status, or anything of interest (no matter how minor or significant), please write in so we may put it in next month's news column.
A new year is a time for new beginnings and a time for looking back on the previous year. In retrospect, we can recall the many blessings granted to all of us. We are thankful for the success of The Biliary Tree and are confident its branches will continue to extend to meet the needs of other new families. We are thankful for the children who have received new livers in 1994 and hopeful that those still waiting will receive their new livers in 1995. We are grateful for those children who remained healthy through 1994 and remember those in our prayers who are hospitalized. We are saddened over the loss of Melanie Guzman and Stephen Lutak in 1994 and we will always remember Tyler Smith, who is no longer with us. Thank you for your support and for your heartwarming stories, kind words of encouragement, and thoughtful deeds. Looking ahead, we are hopeful that medical technology will continue to advance, and even more hopeful that there will someday be a cure for biliary atresia. May 1995 bring us all happiness and health with special prayers for those still waiting for that special gift of organ donation.
Happy New Year to all of you and may all of your wishes come true in 1995.
Warmest Regards,
The Biliary Tree Staff
Your Grandson, Justin Valentin
IF YOU ARE UNABLE TO SEND IN MONEY OR WOULD PREFER ANOTHER TYPE OF GIFT, MAY WE SUGGEST THE FOLLOWING ITEMS:
The Biliary Tree 3835 Richmond Ave., Box 190 Staten Island, NY 10312
Last modified:
11 May 2000