Biliary Atresia: Letter A

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Adam

Adam

by his mom, Angela

Adam was born in March 1997 at The Royal Hospital for Children in Belfast, Northern Ireland, and everything seemed to be fine. As the weeks passed Adam's jaundice did not go away and I repeatedly took him to the baby club and our GP, who all but laughed and called me a first time mother!

Eventually I demanded a referral to the hospital and that's when the FUN began. Every time I turned round another doctor would be there to stick another needle into my child. I really did feel like lifting him up and running out of the hospital, but I guess I knew it was serious this time. After a week of intensive tests, biliary atresia was diagnosed and talk of the Kasai began. They didn't know whether to do the Kasai because Adam was 12 weeks at this stage, but they decided it was a try and Adam was booked for surgery. I went with Adam while they sedated him and leaving my wee baby there was the hardest thing I have ever had to do. I passed the next 4 hours in a daze and if someone asked me now what I talked about, I could not tell them. All I could think of was my baby. I remember the surgeon telling me all about the operation and at the end asking did I have any questions. My only question was "will I get my baby back?" I think at that point that was all that mattered to me.

Adam's surgery went well, although no bile ducts were found and the surgeon said he did his best to place the Kasai at the right point. After surgery he went to Intensive Care Unit and did not need the ventilator, which was great. Six years on I can still see him lying on the wee cot with his wee mouth shaking and attached to all sorts of wires -- not that I noticed the wires, I was just glad to see my baby again!

After another 2 weeks in hospital we came home and with every little temperature we were back at the hospital. We soon got to know all the nurses and doctors! Adam had a bad time with the new formula and when we added the Duocal it went in one end and out the other, so Adam's weight became a problem. We don't have a children's liver specialist here in Northern Ireland, and I was not happy with the dietitians here, so this time I demanded to go to Birmingham in England to see a specialist. Things improved no end after that. They put him back on normal formula etc. and most of his tests came back in the normal ranges -- Yeah!!!

Adam is doing great today. He gets blood tests every 6 months and they all come back in the normal ranges, except the platelets which can go up or down. They are low, but not dangerously low. He really is my miracle and although I wouldn't have asked for him to be born with BA, I thank God every day that he is doing so well and I know in that respect we have been really lucky. Adam has the sticky out veins on his chest but his tummy is not big and so far no ascites etc. He is a real star and goes to the hospital all the time so the student doctors can look at him and try to guess what is wrong. I believe the more doctors that see BA, the more children will be diagnosed in good time for the Kasai.

To finish I would just like to thank you all there at CLASSKIDS. It has been my lifeline in the past and I'm sure it will be again in the future!

Aiden

Aiden

by his mom, Lisa

Aiden was born in April 2002. After 38 hours of labor all I wanted to do was hold our son, take him home and start the life we planned for him. My OB noticed that Aiden looked jaundiced so they ran a little blood work. Aiden was diagnosed with ABO incompatibility. This was the expected source of Aiden's jaundice. His bilirubin was 19. I remember the feeling when the GI doctor came in to speak to us. My husband and I couldn't understand why a GI doctor was getting involved.

After phototherapy, Aiden's indirect bili dropped, but his direct remained high. The doctors grew concerned. The first six weeks was filled with worry, tears, a lot of blood draws, two HIDA scans, and a biopsy. When the results of the biopsy came back I couldn't believe it. Aiden's Kasai was performed at All Children's Hospital, in St. Petersburg, Fl., when he was 6 weeks and 3 days old. Post-op, Aiden was so hard to look at. He had tubes everywhere. He was swollen and had lost his voice from the NG tube. It suddenly hit my husband and I that we had a very difficult road to travel ahead of us. Just 3 days after we went home after the Kasai, Aiden came back to the hospital with ascending cholangitis. Initially, his bili dropped and we were so happy. It went from a 9.8 to a 5.1 in a week. Unfortunately, today his bili is climbing again.

As of now we aren't sure what that means for our future. We just pray for him everyday and give thanks for this blessing. Aiden is truly my dream come true. He smiles, coos, and brings tears of joy to my eyes. A nurse who lost a son to another tragic experience once told me that I needed to mourn the loss of my "perfect baby." The baby I had imagined with no health problems. She told me then to love and cherish the wonderful gift I have been given. I have done this and it has helped. I appreciate the angel the Lord sent us and thank Him for every precious day. My husband Joey, Aiden, and I want to thank C.L.A.S.S. and all of the families here. We are praying for you.

June 2003 Update

Aiden received his gift of life a few days before Christmas 2002. Aiden's liver transplant lasted 10 hours. Right after his transplant the doctors did not seem perfectly pleased. They spent hours without letting us see him. They kept coming back with an ultrasound machine. We soon found out why -- Aiden's portal vein had thrombosed, or clotted off. Aiden went back into surgery to see how much damage was done. The team was able save Aiden's new liver by giving him a second gift, not another liver, but his time it was a cadaveric portal vein.

Since Aiden's transplant we have had a rocky road. Things went up and down with several rejections, CMV, hepatitis, and continued high enzyme levels. Lately Aiden has been sky rocketing. He is growing and doing so well. He recently celebrated his first birthday and is almost walking! It is so amazing to see our miracle do so well. We are indebted to the family that donated Aiden's new liver. We think about his angel all the time. We also want to thank our friends here at CLASS, you have helped us so much through the hard times. The good times lie ahead and Aiden will only soar some more.

February 2004 Update

Aiden has been flourishing over the past few months. Last year was difficult, but a ride I would ride over and over again just to have this end result. Aiden is healthy. We spent 200 days in the hospital last year, most of it out of state. We thought he was going to be re-listed, but he had a miraculous turn around. Aiden is just like every other kid now. He plays runs, climbs, talks and is a wonderful joy to be around.

We still, and always will, remember the donor who gave us this gift and will keep our precious friends here at CLASS in our prayers.

Alec

Alec

by his mother, Collene

Alec was born in July 2001 and was diagnosed with biliary atresia when he was 5 weeks old. He had pale stools and jaundice. His bilirubin was 23 and the Kasai procedure done when he was 7 weeks old. We are grateful for the doctors at Detroit Children's Hospital.

Alec is doing very good now and he has a good bill of health. Alec is taking his Actigall every day. As of his last blood test, his bilirubin is down to normal and liver enzymes are coming down surely but slowly.

Alec is a happy, all smiley little guy! He's crawling, playing patty cake and gets into everything. He's doing everything he's supposed to.

Alec is a true fighter and we'll keep fighting till there is no end. We are blessed with Alec each and every day!

Alexandra

Alexandra

by her parents, Reg and Kiva

Princess Alexandra was born in July of 2002. As all first-time parents we were overwhelmed with joy. She was discharged from the hospital after the customary 72 hours as a healthy baby girl with a great set of lungs. At her two-month check-up, we were concerned that she appeared jaundiced and shared those concerns with her pediatrician at the time. He told us not to worry because it was probably breast milk jaundice and that it would go away soon. Needless to say, we had no idea of what was ahead for our family.

Alex loved to stand on her legs as early as 2 ½ months. We noticed that she was very ginger with her left leg on October 31. We took her to the local ER and the doctor on duty was immediately concerned with her jaundiced eyes and indicated that they were going to have to run some tests. He later informed us of the good and not-so-good news….good news was that Alex’s leg was just fine. The not-so-good news was that Alex had a liver disease and we should visit her pediatrician first thing in the morning. Her pediatrician referred us to Children’s National Medical Center in Washington, DC.

We are so grateful to God for the outward sign of Alex’s gingerly movements of her leg because we are convinced that it was a sign to alert us as to what was going on inside of our little miracle baby. We spent a total of 8 dizzying days at Children’s while they evaluated Alex and concluded that she had biliary atresia. She was already 3 ½ months of age and too old for a kasai. Additionally, her liver biopsy revealed significant cirrhosis. The doctors informed us that Alex needed a liver transplant sooner rather than later because children with biliary atresia normally do not live beyond one year of life without a transplant or a kasai. We were transported to A.I. DuPont Hospital for Children in Wilmington, Delaware for transplant evaluation. She was listed immediately and we continued to wait patiently for a suitable liver.

In March of 2003, we received “the call” while at morning church service. Two weeks prior we had a false alarm, but this was the real thing. The Lord had stepped in and provided a liver for Alex in such a way that we knew it was a miracle. It is something glorious about the number 7, Alex, now 7 ½ months of age was successfully transplanted and recovered quickly. Four days prior to discharge she received a blood transfusion and at the end of the transfusion, she had a reaction that caused a clot in her hepatic artery. The clot caused some liver damage and required another surgery. When the blood was tested there was nothing to raise a red flag so we thought that we were out of the woods. Unfortunately, we weren’t – another transfusion led to a bigger clot and more liver damage and another surgery. At this point, we realized that the testing of our faith was continuing and in the end we would be stronger.

Alex was discharged the day before Easter and God continued to renew our strength. She had a PICC line and required many medications and frequent lab blood draws. There were several hospitalizations during the first six post-transplant months but thankfully they subsided and she continues to do well.

The Princess has graciously accepted a new Prince into her kingdom; however, her adjustment continues as it relates to sharing her parents’ and everyone else’s attention. She has a very strong spirit and God continues to keep her in good health. The Lord has big plans for our blessed Princess and we will continue to trust in Him. There are definite rough periods but the good periods outweigh the rough ones as we watch her explore the world and bring joy to all of those around her…thankfully God has put us on the victorious path that is in Christ Jesus and He doesn’t give any of us more than we can bear nor does He ever leave or forsake us. Please continue to pray our confidence and strength in the Lord!

Alexis Marie

Alexis Marie

by her parents

Alexis Marie was born January 2003. She was a healthy looking baby until she was 8 weeks old when she became jaundiced really badly. So the doctors did some test and diagnosed her with biliary atresia. They put her on the list to have a transplant. We got transferred to a new doctor at Duke University Medical Center in Durham, NC. Alexis was doing well. Even though the jaundice got worse she didn't have any problems. We were going to Duke for monthly checkups but she never got hospitalized.

In August of 2003, the doctors told me that I could be her donor so they sent me through months of testing to see if I was the perfect match. In November of 2003, we got the phone call saying I was a perfect match! So on November 19, 2003 we went to Duke and starting getting ready for the surgery. Alexis was 10 months old now and on November 20, 2003 we were both getting ready to go in the operating room. Alexis was only 16 lbs and she was weak so I was really worried about the surgery. We both came out of surgery and it was a success. We were in the hospital for 2 months and we got to go home on her 1st birthday.

The doctors say she is doing well and everything is beautiful. She is 2 1/2 now and she is up to 40lbs and 3 1/2 ft tall so they are very pleased with her. We have to go to the doctor once a a month for checkups, but hopefully if everything continues to go well we will be able to move up to every 6 weeks instead of every 4 weeks. I think everything will be well. We just continue to pray that God will keep her healthy and strong.

Alexandra (Allie)

Alexandra (Allie)

by her mom and dad, Alexander and Kathleen

Our daughter Alexandra Kathleen was born on August 2004. She was a beautiful healthy little girl. At her 2 month appointment my husband mentioned to the doctor that her eyes were very yellow and have been that way for at least 2 weeks. The doctor sent us that day to get blood work and were told her liver results were off. We went the next day to the hospital for an ultrasound. The ultrasound revealed that our daughter had no gallbladder or ducts connecting to the liver. We were told this was called biliary atresia. Something we had never heard of before. Our daughter was sent to surgery in November for the Kasai Procedure. She came out of surgery with flying colors. We were made aware she would eventually need a liver transplant, but this procedure should give her time to get bigger.

This was not the case. We went through the next few months with a lot of crying and frustration. She began to have acsities. This made us very nervous and her very uncomfortable. We were admitted to the hospital in December and she received her transplant in January. This came a lot sooner than we had thought, but thank God it did.

Our daughter is now 3 months post transplant and is doing amazing. She inspires and amazes us everyday. We are so thankful to the donor family, we can only say thank you. However, it just never seems enough.

We have made many friends through the process and are so grateful for all their help also. We are thankful for everyday we are given with our beautiful little girl who has been through so much in such a small time. Allie is our gift from God.

Ambria

Ambria

Ambria was born with biliary atresia and received a liver transplant when she was just eight months old. Four years later, she has grown into a healthy and very active preschooler. She has two older brothers, Joey and Zachary, and a special pet rabbit named Conway. Ambria loves to ice skate and you should see her go! Her other favorites are roller-blading, swimming, and bike riding. Before and after her transplant, Ambria's family has been dedicated to promoting organ donor awareness. In 1999, Ambria attended the First Family Pledge Congress on Organ and Tissue Donation in Washington D.C. as one of three delegates from Massachusetts.

Andrew

Andrew

by his mother, Claudia

Andrew was a hefty 9½ pounds at birth and hasn't slowed down yet despite being diagnosed with biliary atresia at 8 weeks. His Kasai was performed at 10½ weeks and he's thrived ever since. He has a very healthy and normal life. He prefers to give himself his Actigall, mixing it in his orange juice or applesauce. Andrew is a cheerful, carefree little boy with a funny sense of humor. He is enrolled in preschool three mornings every week. He loves to ride his bike, roller blade, play basketball, and work on the computer.

Update 2005

Andrew lives a very normal, healthy life for a 10 year old. He plays soccer in the fall and his teammates voted him MVP this year. His passion is basketball and he play on a travel team. In the spring, it is baseball. Andrew is backing in the glory of the Red Sox World Series win. He also enjoys computer games and the new IPOD he won by raising over $2500 for the Biliary Atresia Fund for the Cure this summer.

Andrew

Andrew

by his mother, Chris

Andrew was born in February 2001 and diagnosed with biliary atresia. What a journey we have been through these last few months and there will be more challenges facing us in the future.

Andrew's birth was uncomplicated, but he was slightly jaundiced. His yellowness seemed to fade after 2 weeks, or so we thought, and we assumed he was healthy. Early on he developed abdominal distention and his stools were slowly changing color, becoming increasingly lighter. He was diagnosed with gastroesophageal reflux at 4 weeks. Eventually, at 9 weeks Andrew's coloring and abdominal distention worsened and he went through a series of tests. The doctors mentioned biliary atresia along with many other terrifying conditions. When I researched BA I knew this is what Andrew had but we were still praying for a better outcome.

We were referred to St. Louis Childrens Hospital and he had an exploratory lap and liver biopsy. They were unable to perform a cholangiogram so they went ahead with the Kasai. BA was the confirmed diagnosis with severe hepatic injury. We were so afraid for our little baby and didn't know what the future held for him. We knew his chances of a successful Kasai were not good at such a late date. But the doctors needed to give the surgery a chance.

Andrew's post op course was complicated by increased ascites, his incision leaking fluid, poor oral intake and dehydration. He finally had a Broviac placed as it was heartbreaking to see my child get so many IV and lab sticks. His veins would blow so easily and he was black and blue from head to toe.

After 2½ weeks he started to stabilize but his liver function was poor and bile drainage inadequate. We finally took our baby home and it was so great to be home and try to be a normal family again. Andrew has a big brother, Zach who really missed him.

Andrew has been hospitalized only once since his surgery. He has needed periodic Albumin and Vit. K infusions. His bili is 20 and liver enzymes have not worsened significantly. He has been listed since mid June and is doing great at home. He is so jaundiced but is doing all the normal baby things: rolling from side to side, smiling, squealing and we have started feeding him cereals.

Andrew is 5 months old now and we are so lucky to have him in our lives. He is such a content, happy baby (when fed and diapered of course). It has been so helpful to talk to other families who have faced the same challenges. We are not alone.

Anna

Anna

by her father, Evan

Anna was born in January 2000 at home (not intended to happen). It was determined that she had polycythemia and she was put into intensive care. When she was released from the hospital her bili count was above normal, but it was thought to be due to the polycythemia.

Anna was diagnosed with biliary atresia at 7 weeks, 3 days at Wilford Hall Medical Center. Naturally, this was about the time that success rates for the Kasai surgery begin to drop. She was operated on at Wilford Hall Medical Center at 7 weeks, 6 days. Afterwards, she was in intensive care for almost 2 weeks due to swelling and almost didn't make it (she coded but was resuscitated with an EPI and CPR).

Anna's Kasai was partially successful (her bili numbers went down to 6.0 total and 3.0 direct). Then, in June, some kind of infection blocked her Kasai. From that point her progress went downhill quickly. She was admitted to University Hospital in San Antonio, Texas. Her transplant took place in August when she was 7 months old. She received a split liver (partial lobe) transplant performed by Dr. Cigarroa. Both recipients of the liver, Anna and a lady with fatty liver disease, recovered quickly. Anna needed gancyclovir for an infection at day 7 which she recovered from.

Since then Anna has had several infections that have given us scares, but nothing to where she's been admitted into the hospital. She is now 7 months post-transplant and doing well.

7/2002 Update: Anna is now 2 years post transplant and doing very well. She is taking Prograf for anti-rejection and is growing up very fast.

Anna

name

by her mother, Kim

Photo: Anna and Emily

Anna had her liver transplant at Fairview University Medical Center in April 2002 and she's doing terrific! Luckily Anna's health didn't deteriorate while she waited for her new liver. Consequently, she recovered very quickly. She spent just 11 days in the hospital post-transplant.

Anna is a real trooper. She's only 2, but she never complains about taking her medication and willingly extends her arm for her blood draws. She amazes us on a regular basis.

She enjoys playing with her big sister Emily (6 years old). Emily was Anna's favorite visitor during her hospital stays.

Annika

Annika

by her mother, Moreena

Annika was born in October 2000 and was jaundiced from birth. At 5 weeks she was diagnosed with biliary atresia and had the Kasai operation. The Kasai appeared to be successful at first, as bile flow was restored. However, at 3 months she was showing definite signs of continuing liver failure -- ascites and esophageal varices.

At 7 months, she developed 2 large bile lakes in her liver. Two bile drains were placed, which emptied the bile successfully, but led to chronic cholangitis. Although she clearly needed to be transplanted soon, problems with her portal vein meant that a living donor was not a safe option for her. So we waited in the hospital for a donor. As the wait in the hospital dragged on for months, the doctors in Chicago decided that it might be time to consider the living donor surgery after all as the bacteria in and around her liver were becoming more and more resistant to antibiotics. My husband and I were devastated to learn that neither of us have a compatible blood type to Annika, but my cousin, Eric, volunteered to donate. However, during his angiogram he suffered a collapsed artery and was disqualified as a donor for several weeks. It wasn't clear that Annika had several weeks, though. Her decline was becoming more rapid every day. We kept hoping that she would hit another plateau, but things just kept getting worse. She spent nearly all her time asleep, but when she did awake every couple of hours or so, she just screamed. She did not always recognize me. Eric's brother, Cliff, decided that he could overcome his fear of surgery and volunteered. But then Annika began to have serious trouble breathing--watching her struggle was so scary--and she was moved to the ICU.

Amazingly, a donor was found for Annika just 8 hours before Cliff was scheduled to begin his surgery. When the surgeons opened Annika up, they discovered that the living donor surgery definitely would not have worked with her because of the problems with her portal vein. It was truly a miracle that a donor was found for her at the last minute. The surgeons also finally found the source of Annika's constant infections for the previous 5 months--she had two huge abscesses behind her liver. Evidently, her liver had hidden these from the MRI and CT scans that they had done to try to find the source of her infection.

Annika had a very long recovery after the transplant because of the infections and also because it took a while to wean her off the ventilator due to her pre-transplant breathing difficulties (she had fluid in her lungs). About 2 months after her transplant, we finally got to go home. She was like a new child--amazing energy and a great appetite. She put on nearly 4 pounds and grew 2 inches! However, we were only home for 10 days before we ended up back at the hospital. Annika developed a clot in her hepatic artery that could not be fixed surgically, and we were told that she needed to be retransplanted.

My cousin, Cliff, got the call again, and he once again flew to Chicago to donate. Since her portal vein had been repaired with the first transplant, a living donor transplant was possible this time. Three months later we finally took her home. After 10 months in the hospital, 1 month on a ventilator, Anni was pretty delayed. However, lots of speech and physical therapy had her caught up within a year. Finally at home and finally feeling good, she seemed the happiest girl in the world!

Update 1/13/04

Annika still seems the happiest girl in the world! Even just taking a walk in the mall, she makes everyone she passes smile because she's just so goofy with joy. Two years post-transplant, we are still waiting for normal labs and a normal belly size, but there's no denying how much better she is feeling these days. Her m.o. for every day is constant motion, with running commentary for anyone who will listen. She is also now the loving (and I do mean *loving*) big sister to Franciska (Frankie), who adores her.

Our gratitude to both donors is unending. It's amazing and astounding to be the recipient of such kindness and generosity. And, of course, the medical staff at Chicago is awesome. I can never express how grateful we are for each day with our little girl.

Annika was born in October 2000 and was jaundiced from birth. At 5 weeks she was diagnosed with biliary atresia and had the Kasai operation. The Kasai appeared to be successful at first, as bile flow was restored. However, at 3 months she was showing definite signs of continuing liver failure -- ascites and esophageal varices.

At 7 months, she developed 2 large bile lakes in her liver. Two bile drains were placed, which emptied the bile successfully, but led to chronic cholangitis. Although she clearly needed to be transplanted soon, problems with her portal vein meant that a living donor was not a safe option for her. So we waited in the hospital for a donor. As the wait in the hospital dragged on for months, the doctors in Chicago decided that it might be time to consider the living donor surgery after all as the bacteria in and around her liver were becoming more and more resistant to antibiotics. My husband and I were devastated to learn that neither of us have a compatible blood type to Annika, but my cousin, Eric, volunteered to donate. However, during his angiogram he suffered a collapsed artery and was disqualified as a donor for several weeks. It wasn't clear that Annika had several weeks, though. Her decline was becoming more rapid every day. We kept hoping that she would hit another plateau, but things just kept getting worse. She spent nearly all her time asleep, but when she did awake every couple of hours or so, she just screamed. She did not always recognize me. Eric's brother, Cliff, decided that he could overcome his fear of surgery and volunteered. But then Annika began to have serious trouble breathing--watching her struggle was so scary--and she was moved to the ICU.

Amazingly, a donor was found for Annika just 8 hours before Cliff was scheduled to begin his surgery. When the surgeons opened Annika up, they discovered that the living donor surgery definitely would not have worked with her because of the problems with her portal vein. It was truly a miracle that a donor was found for her at the last minute. The surgeons also finally found the source of Annika's constant infections for the previous 5 months--she had two huge abscesses behind her liver. Evidently, her liver had hidden these from the MRI and CT scans that they had done to try to find the source of her infection.

Annika had a very long recovery after the transplant because of the infections and also because it took a while to wean her off the ventilator due to her pre-transplant breathing difficulties (she had fluid in her lungs). About 2 months after her transplant, we finally got to go home. She was like a new child--amazing energy and a great appetite. She put on nearly 4 pounds and grew 2 inches! However, we were only home for 10 days before we ended up back at the hospital. Annika developed a clot in her hepatic artery that could not be fixed surgically, and we were told that she needed to be retransplanted.

My cousin, Cliff, got the call again, and he once again flew to Chicago to donate. Since her portal vein had been repaired with the first transplant, a living donor transplant was possible this time. Three months later we finally took her home. After 10 months in the hospital, 1 month on a ventilator, Anni was pretty delayed. However, lots of speech and physical therapy had her caught up within a year. Finally at home and finally feeling good, she seemed the happiest girl in the world!

Annika still seems the happiest girl in the world! Even just taking a walk in the mall, she makes everyone she passes smile because she's just so goofy with joy. Two years post-transplant, we are still waiting for normal labs and a normal belly size, but there's no denying how much better she is feeling these days. Her m.o. for every day is constant motion, with running commentary for anyone who will listen. She is also now the loving (and I do mean *loving*) big sister to Franciska (Frankie), who adores her.

Our gratitude to both donors is unending. It's amazing and astounding to be the recipient of such kindness and generosity. And, of course, the medical staff at Chicago is awesome. I can never express how grateful we are for each day with our little girl.

Anthony

Anthony

by his mother, Katie

Gabriel Anthony was born in May 2001 at Morton Plant Hospital in Clearwater, FL. We were about ready to go home the following Thursday when they noticed that he looked a bit yellow. They did tests and found that his bilirubin levels were high. He was put under phototherapy lights for two days but his numbers didn't go down. He was also turning this very odd blueish-green-grey color. Everyone was freaking out at his color. They sent him to the NICU and ran every test they could possibly run and they kept giving us the same answer... "that test is normal"!

The following Monday he was transported to All Children's Hospital in St Petersburg, FL. We were told they had a much larger staff of specialists and that he would be getting much better care. They did a HIDA Scan and liver biopsy but neither of those tests showed anything conclusive so they scheduled exploratory surgery for June 6. During surgery they found that there were no bile ducts in his liver. Our worst fears had come true... he did have biliary atresia. The Kasai was performed and he came through the surgery with flying colors. About 10 days later we finally got to bring our beautiful baby boy home.

Over the next few weeks we had appointments with the pediatrician and GI. His jaundice wasn't going away and his numbers were not going down. On top of all this, they found that he had inguinal hernias. He went back to All Children's to have those repaired and again he came through surgery wonderfully. No problems at all.

Anthony was listed for transplant on October 9. He is listed as status 2B and we hope we get the call soon. I am also being tested to see if I can be a donor for him, so we'll see how that goes.

We can only hope and pray that things go well for the little Muncher. From the moment he was born he just looked like a little Mun Chi Chi to me...so the nickname Munchie has stuck since then. We call him that so often that we're afraid he won't know his real name! For now he is very happy, giggly... and flirty! He already knows how to raise one eyebrow... which cracks me up! He is gaining weight with the help of the Polycose that we add to his Alimentum.

I want to thank all of you for this wonderful site. I feel as though we have found long lost relatives in you all. Take care and God Bless all of our Children.

April

April

by her mother, Gwen

April was born in April 1991. She was diagnosed with biliary atresia when she was eight weeks old, and the Kasai procedure was done when she was eight weeks and one day old. We were fortunate to have wonderful doctors at UC Davis Medical Center in Sacramento, CA. April had two revisions to her Kasai, then closure when she was 11 months old.

We now live in the "Frozen North," better known as Wisconsin. April is 12 this year and attending a brand new Middle School, where she is in the 6th grade. She does well in school and has many friends. She always has a bright smile on her face. She is positive and enthusiastic about life and loves to get involved with anything she has time for. She was elected Treasurer of the Drama Club and is an up and coming "Drama Queen." She's also on the Dance Team and she's the only 6th grade oboe player in the school band. She loves playing the oboe, which is a unique and unusual instrument. I think that is why she chose it and her band teacher tells me she is a natural.

April's health is excellent. Her annual blood tests show that everything is normal. We call April our walking, talking miracle and we truly believe that's what she is. April is growing at a normal rate. She complains that she's too short, but actually she is just right. April is very good about remembering to take her URSO pills and her vitamins every day.

April has a big brother, Jeff who is 15 and a big sister Julie, who is 13. Her best pal is our two-year-old Cairn terrier "Dodger." My husband, Mike, and I often think back on the time when April was so sick. We were very young parents -- April's brother was only 3 and her sister was 22 months. Sometimes we are amazed that we survived that very difficult time in our lives. But we learned to take one day at a time and to be grateful for each and every one of those days. We also learned what we would be willing to sacrifice if we could just keep April in our lives. That experience helped us to grow and strengthened and bonded our family together forever.

Earlier this year while visiting California we stopped by the UCD Medical Center and we were able to visit with some of the nurses that took such good care of April. The tears flowed as we thanked them for all they did for our baby. There were tears in their eyes too as they remembered what a sick baby she was and then to see her now, the picture of good health. They said it reminded them of the reason they come to work everyday -- to help kids get better.

April has expressed a desire to help other kids with biliary atresia. She says she wants to be an inspiration to the parents who are sad because their baby is sick. I told her that is what the CLASS web site is all about and that we are on a list so that we can be supportive of any family who lives close to us. She thought that was great.

Ashlee

Ashlee

by her mother, Kristy

Ashlee was born in November 2000. She has one sister, Alyssa, who makes her smile like you wouldn't believe.

At birth Ashlee was a healthy 7 lb 14 oz baby. When we were released to go home she was a little jaundiced, but then so was Alyssa as a newborn. Two weeks passed and everything was yellow - her skin, nails and eyes. The doctor had me stop breast feeding to rule out breast milk jaundice and ordered a bili test. Her level was 18.

Ashlee was admitted back into the special care nursery and she went through phototherapy which brought her indirect bili down to 7, but her direct was still 4. She went through a million blood draws, an ultrasound, HIDA scan, and x-rays. I was even tested for hepatitis. It broke my heart to see her go through so much at such a young age. Everything came back normal, except her liver enzymes which were slightly elevated. A few days later she had another HIDA scan and this time there was no evidence of flow.

We were sent to Boston Floating Children's Hospital in Massachusetts where she underwent many more tests, including a liver biopsy, ultrasound, endoscopy, and laparoscopy. She was first diagnosed with neonatal hepatitis until they found scarring on her biopsy. Finally they had to surgically explore and found textbook biliary atresia. Ashlee had her Kasai on December 20, 2000. We spent her first Christmas and New Years in the hospital away from home and family in a different state.

After her Kasai, Ashlee spent two days in the PICU. She had a breathing tube in her mouth and a NG tube in her nose. She was put on the regular pediatrics floor after the third day and she did well. She did develop a lymphatic leak, but a special formula helped to soak up and seal the leak. Her bili level did not go down as they planned and her stool was still white/gray, so they gave her massive doses of steroids for three days through her IV. It made her miserable but it worked as her stool turned green after the third day and still is to this day. She went home after 18 days in Boston.

Today Ashlee seems to be holding her own. She is on the liver transplant list. Her liver and spleen are big and her liver functions remain high, except her bili which is normal. She is not yellow at all and to look at her you would never know she was sick. She has been diagnosed with portal hypertension, and esophageal and stomach varices. She has been sick on and off for the past couple months. She is 2 years old now and walking and talking and growing like any healthy toddler would. I pray everyday that she will get her liver in time while she is still a little healthy. I really believe that everyone's prayers helped her through this. I am so happy that we found this web site. I have met so many great people. Everyone is so patient with all of my many questions, and they are so supportive. I consider everyone here part of our family. Thanks to everyone.

Ashley J.

Ashley J.

by her parents, Laurie and Joey

Ashley was born on a bright sunny Florida afternoon in July. She was beautiful, head full of thick reddish-brown hair and the biggest dark blue eyes anyone has ever seen. Other than having the umbilical cord tied around her neck a few times, the delivery and birth went without problems. However, because Ashley was born with an unknown abnormality on or near her ovaries she was taken immediately from us for what would be her first of many ultrasounds. Little did we know that this would be the beginning of her life in and out of hospitals.

In early August, we took Ashley home to meet her big brother, Brad. Seeing our two children together gave us the overwhelming feeling that our family was complete. God has blessed us with the beauty and innocence of two very beautiful children, life could not be any better. Even with the chaos of trying to figure out what was wrong with Ashley, going to the hospital every day for labs, having HIDA Scans, and ultrasounds, we were still feeling like the most blessed family. However, we learned that Ashley's bilirubin was extremely high at just a few days old, her bili level was a 20. We also learned that Ashley had a choledochal cyst that was on her common bile duct. This cyst was precancerous and was blocking the bile flow from Ashley's liver. At six weeks of age, it was determined that Ashley would need surgery to remove the cyst, it was then that biliary atresia was discovered.

Hearing the words biliary atresia and liver transplant from Ashley's surgeon meant nothing to us; he might as well have been speaking a foreign language. We were numb, shocked, expressionless, dumbfounded, scared...all these adjectives and many more. How can our beautiful baby girl need a liver transplant? The surgeon told us that Ashley's liver was dying and she would need a liver transplant by the time she was 10 months to a year old. Although, we were scared for Ashley's future, our faith told us that she was going to be fine.

Ashley's first six months were spent in and out of the hospital for various reasons, from severe dehydration to a bile leak. While in ICU, Ashley had to be resuscitated at least once by the nursing staff. The bile leak caused her other organs to begin shutting down. Over the course of her first six months of life, we almost lost Ashley three times but Ashley's a fighter.

Now almost ten years after her Kasai, Ashley is doing well. She has portal hypertension, some small varices, low platelets and a low white blood cell count. Ashley has three small masses in her liver and so far they appear to be benign. We are currently preparing ourselves financially and emotionally for a liver transplant. Although she is not currently listed for a transplant, we know that a liver transplant is needed for her future. Ashley does well in school but struggles to maintain an A/B average. She required speech therapy for three years and has been diagnosed with mild inattentive ADD.

Despite all that she is faced with, our daughter remains a normal child. Normal for her is dancing, playing with friends, doing backhand springs at the gym and playing with our family pets, Sarge (dog), Skylar (cat), and her pet hamster, Nugget. Ashley loves her big brother, Brad, and enjoys the time they spend together even if its playing Guitar Hero or chilling out in his room. Normal for Ashley also means that she goes to the hospital at least every four months for labs, MRI's, ultrasounds, scopes, etc. Normal for us, is looking at our daughter's eyes, seeing strength and beauty that surpasses anything we can comprehend.

Ayden

Ayden

by her mother, Mary

Ayden was born in April 2001 with long red hair and blue eyes. She was a full term baby with no complications, delivered by a planned caesarean section. She became jaundiced, but it was clearing up within a few days after she left the hospital.

By three weeks old she was becoming jaundiced again. My daughter pointed this out during a visit to her nurse-midwife, who assured her Ayden just had "breast milk jaundice" and that there was no need to be concerned. At 10 weeks her pediatrician saw her for a runny nose and immediately ordered blood tests. We learned that Ayden's liver and spleen were enlarged and her liver numbers were elevated. She was admitted to University of Kentucky Children's Hospital that night and began a series of tests to determine the cause of her jaundice.

In the next two days we did enough internet research to realize that it was important to find a medical center that had a lot of experience with liver disease and liver transplants. We requested a referral to Cincinnati Children's Hospital, which luckily is only 2.5 hours from us. Ayden was diagnosed with biliary atresia and had her Kasai procedure done at 11 weeks old, on June 22, 2001, and the surgery worked! Her GI is Dr. Bezerra, her surgeon was Dr. Alonzo, and we've seen most of the whole team at one time or another. We really like them, they respond quickly to phone calls and questions, and we do question everything now.

Ayden had two bouts of ascending cholangitis between July and October, then one of C. diff. We spent three nights in the hospital each time, then home on a PICC line. Then we had five months to breathe, then back to Cincinnati with cholangitis at the end of February 2002. She's gone a record eight months now without another hospitalization. She had several ear infections between November 2001 and July 2002, so she had tubes inserted in July.

Ayden is growing really well, especially now that she doesn't get all those earaches. She eats well - in fact, we say she "grazes" all day long. She has an enlarged liver and spleen (both stable right now), and she itches sometimes even though her bilirubin is normal. That's about it as far as symptoms. She was a little behind on large motor skills for a while, most likely because of her hospitalizations and big belly. She sat alone at 8 months, started crawling at 10 months, and walked by 15 months. At 19 months she never walks anymore - she runs everywhere and we have to be quick to keep her out of trouble. Her big brother Alex will be 7 in December, and he's her self-appointed "guard," often having more patience with her than us adults.

Like everyone else here, we've been through some very scary times and I know there'll be more. It's wonderful to see so many CLASS kids living normal lives. It gives us a lot of hope for Ayden. It is a blessing to have the support and knowledge of this group.

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