Biliary Atresia: Letter L - M

Click on a child's name below to show their story. Click again to collapse the panel, and select another to open.

Laura

Laura

by her mother, Lynne

Laura Patricia was born in March of 1999. She took her time being born but was born healthy and beautiful at 8lbs 6oz. I always felt something was wrong but never had any proof - not until she was 4 1/2 weeks old and I noticed her stools were a strange color. I took her to the pediatrician twice with concerns and finally blood tests were done. Unfortunately the results were very abnormal. She looked fine except for a bronze tinge. I was asked if I had Mediterranean blood in my family. I said no! Her belly also showed a slight increase in size around her liver.

That night my fears escalated. I never thought it would be this bad. I was told she would need a series of tests at the Children's hospital and would need to see a liver specialist. After 2 weeks of not knowing her diagnosis or prognosis she was finally diagnosed with biliary atresia. Laura had a Kasai procedure by who I believe is the best surgeon in the world. She is still doing great (knock on wood!).

My little angel has given me 2 years of uncertainty and worry every single day. She still does, but I also get all the regular 2-year-old stuff. I have gotten a lot of information from this site and I will continue to do so. I am now living everyday with the most as I can and try to see the positive in people and things. We never know when our day will come.

I love watching Laura and her sister and marvel in the tiny things. I am so grateful for my daughters. They are the best gifts in the whole world. Fortunately Laura is thriving and doing well without a transplant. Her doctors are hopeful it will be a long time before she requires one. I thank God and all the medical system and especially my family for all their love and support.

Lauren

Lauren

Hi, my name is Lauren and I was born with biliary atresia. I was born in July 1993. I had a few problems along the way, like cholangitis, but now I'm doing better. Also I just found out I have portal hypertension, but no varices. That's a good thing! I'm in 4th grade and my favorite subjects are: Math, Science, and Writing. I also enjoy playing soccer and basketball. I have a big brother, Chris who's 11 years old. I also have 2 kittens, Misty and Precious.

Lauren P.

Lauren P

by her parents Stacey and Michelle

Lauren was born in May 2003. She was a 10-lb.1-oz. full term baby. About week two of her life we noticed the jaundice level seemed to be increasing and we contacted our pediatrician with our concern. She ordered testing immediately and started consulting with a specialist the same day. Then on 6/3/03 she was diagnosed with possible biliary atresia. She underwent surgery at DeVos Children's Hospital on 6/9/03 to perform further evaluations and possibly the Kasai procedure. She was released after a seven-day stay following the 8-hour surgery. Lauren's health was rapidly improving when she developed a bowel obstruction from scarring related to her Kasai and underwent surgery again, only 17 days after her Kasai.

Since her bowel obstruction surgery things have been steadily improving for Lauren, with her bili count down to 0.7 within 3 months after her Kasai. Lauren is a very happy, easy going, smiley little baby who has captured the hearts of many.

Lauren has an older sister Alyssa who just loves her. The adjustment of sharing her Mommy and Daddy was compounded by the extra needs of Lauren during the early months, but now Alyssa is getting adjusted.

My family owes many "Thanks" to those at CLASS that have provided information, insight, support, encouragement during this most difficult time. Our families have also played a significant role in helping us get through the challenges that biliary atresia presents. We count our blessings every day and put our faith in the Lord.

Leslye

Leslye

by her father, Marco

Leslye was born in May 1997 in El Centro Regional Medical Center. Two months later we were at Clinica de Salud del Pueblo in Calexico, CA for a routine well baby check. But this day we found out that Leslye was not well. Dr. Zimmerman sent Leslye to San Diego Children's Hospital in San Diego. Leslye had biliary atresia and the Kasai procedure was performed. The operation was unsuccessful and a liver transplant was the only other option. This was our worst nightmare. Then they sent Leslye to UCLA and she was listed for a liver transplant.

In August 1997 we received good news. They had a donor for Leslye. The transplant was scheduled for 8:30 a.m. and took about 5 hours. All went very well, but 2 days later Leslye couldn't breathe by herself. She needed a ventilator for about four weeks to help her breathe. The doctor wanted to do another surgery, but one day she started breathing by herself. The doctors didn't know how this happened.

In October 1997, Leslye was released from the hospital. Today my daughter is a healthy girl. I don't write or speak English very well to tell everything I feel in my heart. Because of organ donation many lives are saved. Leslye is one of those. We would like to thank all donors. Thanks to every one. Dios los bendiga.

Lily

Lily

by her dad, Mike

Lily was born at home in July of 2004, right on schedule. She was a pink and lively and perfect infant who loved to nurse from the first minute. For the next five months, Lily thrived. She loved to play with toys and interact with her family, and she ate and slept well. She grew normally and progressed as would be expected of an infant her age. We did wonder about her color at times, but her jaundice was very subtle for the first few months, and some days it seemed absent. And her health was always perfect. The progression of jaundice was subtle enough that only now by looking back at photographs have we seen the progression.

When Lily was five months old, on December 22nd, we took her to a local emergency room for a nosebleed that wouldn't stop. After a few blood tests were completed, it was there in the E.R. where we first heard the words "liver failure" and came to understand how serious the situation was. Within hours we were referred to the bigger regional hospital in Anchorage for more extensive testing. There we spent a couple of the most uncertain and emotionally difficult days we've ever been through, ending with a HIDA nuclear scan of Lily's liver that showed no functional flow of bile. We had studied a lot about pediatric liver disease over those previous few days, so we had a real good idea what we were seeing as that nuclear scan slowly appeared on the screen. Once we saw the results and our doctors told us it was time to go to Seattle, we knew what it meant - Lily would need a new liver to survive.

We were referred on to the Children's Hospital in Seattle for a liver transplant evaluation the day after the HIDA scan. Lily and her mother left that night. They spent a week in Seattle undergoing tests for the transplant workup. She started the week with a liver biopsy which finally confirmed her diagnosis: biliary atresia. We also learned that week that Lily had two spleens (polysplenia) and some other aspects of the polysplenia syndrome including an odd layout to the major veins around her liver. Seattle Children's hospital evaluated all her other organs carefully to make sure she was otherwise healthy. Lily passed these tests and was finally listed for transplant a month later, after overcoming the respiratory virus RSV back in Anchorage, and after some successful battles with insurance.

At that time, Lily was placed high on the waiting list due to the progression of her disease. All the doctors in Anchorage and down at the transplant center said it would be "sooner than later", so we decided to wait for transplant in Seattle. We moved into the Ronald McDonald House Seattle and ended up waiting 21 days there before a suitable liver became available. When the news came, Lily had already been in the hospital for two weeks due to her inability to generate blood clotting factors. She had been receiving daily infusions of blood plasma to help her clot her blood.

So in early March, Lily spent almost 10 hours in surgery to receive her gift of life: the reduced left lobe of a split liver. An adult at a nearby hospital received the right lobe from the same donor. The surgery went very smooth and Lily spent the next 10 days in the ICU recovering from surgery. Her incision was left open for almost a week! This was due to the size of the donor liver. Gentle traction was applied to her abdomen for a few days to carefully pull the two sides of the incision together for closure. Once they could finally closer her up, she was back to the pediatrics floor within days and then "home" to the Ronald McDonald house after a couple more.

Lily wasn't quite herself for a couple weeks post-transplant, but she is back now to being happy as ever. She seems to be tolerating her medicines well, and we are working hard to get her back onto the normal growth curves for a girl of her age. Every day she eats a little more and her smiles are a little easier to coax. We are enormously grateful to our donor family and to the wonderful people at Seattle Children's hospital.

Lucy

Lucy

by her mom, Janelourie

This is my daughter Lucy. She turned 6 in December 2005. When she was 10 days old she started turning golden yellow and we took her to the doctors. They put her in the hospital to run tests. It took two weeks to determine that she had biliary atresia. We went to another hospital for the Kasai procedure, but unfortunately it worked for just one day before she started having problems and turning green. She was back and forth to the doctors for 2 months until she was finally put on the transplant list in February 1999 in Pittsburgh, PA. At first, we had problems with our insurance but eventually they agreed to pay for Lucy's transplant. We hadn't even received our beeper yet when the transplant coordinator called and said they had a liver for Lucy. The doctors said it was a perfect match. So, in March of 1999, Lucy got her new liver and a new lease on life. She was in the ICU for just 3 days. Six days later she was back home with her sisters Ashlye, now 15, and Marilyn, now 10.

Lucy is doing exceptionally well. Other than problems with her egg allergy everything is going great. She has blood work done every month and her liver numbers are all good.

Lucy is a joy to have. I thank God every day for letting Lucy live and I thank the donor's parents for sharing their child's liver with us. The donors and the donor families are the real heroes here Trusting in the Lord!

Madeleine

Madeleine

Madeleine received her liver transplant at the age of 7 months at California Pacific Medical Center. She had a difficult post-transplant course, which included a battle with Legionnaire's Disease. After everything settled down she has been very stable. Madeleine is 6 years old and just finished Kindergarten.

Marcus

Marcus

Marcus was born in September 2002 and was a healthy baby at birth. At 8 weeks he was diagnosed with biliary atresia and had the Kasai operation. The Kasai appeared to be successful at first but as weeks went by we found that it was not as good as we thought. He was later hospitalized for Cholangitis twice & put on the national liver transplant waiting list November 2003. He was very jaundice & his labs were very abnormal.

We got the call an early February morning of 2004! The hospital had a donor for Marcus. We headed straight to Children's Hospital in Dallas, Texas. The surgery took about 8 hours & when the surgeon came out we knew something wasn’t right. He informed us that there was no blood flow out of the liver & that they were going back in to see if they could correct the problem. The next morning Marcus was put on a Status One waiting list. He was at a very critical state so that’s when we decided for me to get tested to donate. All the testing was done that day & Marcus’ 2nd transplant was scheduled for the following morning at 7am. We barely had time to think, everything was going so fast. His 2nd transplant was a success but because of the problems with his 1st transplant he was at a big disadvantage. His kidneys were already shutting down; his blood pressure was through the roof, etc. He was on the ventilator for almost a month & in the hospital for 2. He had physical, occupational & speech therapy. We left the hospital with a different little boy!

Things were good until December 2004 when Marcus had his first bleed and was diagnosed with esophageal varices. This was very shocking to me; I didn’t understand why he was having this after his transplant & not before! While in the hospital he was diagnosed with Portal Hypertension because of a narrowed portal vein & also PTLD or Post-Transplant Lymphoproliferative Disorder. He was in the hospital for 3 weeks & even spent Christmas there, he was released on New Years Eve. Since this diagnosis he has been getting banding for his varices on a monthly basis & the doctors are keeping a close eye on his EBV count relating to his PTLD.

I have nothing but love for his first donor and the family. I thank them everyday for the wonderful gift they chose to give to my son. Organ donation saved my son’s life.

Maribel

Maribel

I was born on February 1982 at UCH London and at 6 weeks I was diagnosed with Biliary Atresia and under went a Kasai operation in March 1982 at Kings College Hospital in London where they took over my care ever since. Since my Kasai, I have had ongoing treatment and regular clinic check-ups. As I got older my condition became stable and I had a pretty normal childhood, therefore the doctors increased the gaps between my check-ups. I was only going twice a year and OGD every 2-3 years.

As a child I was very difficult to feed, as I was very fussy and was very underweight for my age and height. I was put on food supplements and eventually gained some weight and started eating properly. Then at age 14, my LFT’s began to shoot up slowly, my biluribin in particular and my doctors predicted that I would need a transplant within the next few years. However at the time I didn’t feel or look unwell and I still lived my life as a normal teenager. I didn’t let my illness get in the way of things. I carried on my education and went onto college.

By January 2000, I became really ill and was taken into hospital with chronic cholangitis and was diagnosed with secondary Biliary Cirrhosis. I was told I needed to be put on the waiting list for a transplant immediately. During my stay in hospital I was in the paediatric ward because I hadn’t been transferred over to the adult care yet. Therefore, they though it would be a good time to do it then before my transplant. However, at the time I was in a state of confusion and depression. The thought of a transplant scared me half to death and I didn’t think I would be strong enough to go through it, plus I was at the end of my course at college, I didn’t want to leave and throw it all away. Being transferred to a new team to take over my care was a daunting thought as I knew my mum couldn’t stay with me there. Therefore I couldn’t bring myself to say yes to go ahead and put me on the list. I felt that I had to get myself emotionally ready before I signed anything. Then on June 2000 after having been through 4 bouts of cholangitis and numerous hospital stays I decided it was time so I agreed to go ahead with it and I had almost finished college by that time.

A year passed and still no call. My quality of life was slowly deteriorating and I had to defer my university applications and stopped working as well. Then in June 2001 that call came and I was blessed with the greatest gift all, a new life and a new beginning.

Now I live everyday of my life as if it is the last and thanking God for all the blessings he’s given me and not forgetting my donor and his family. They will live in my heart forever and I live my life for him too!!! I am now in my second year at University, studying Music and Media Management.

I just want to give thanks also to my wonderful family and friends, especially my mum, who has been through the journey with me every step of the way. I would also like to thank the great doctors and my surgeon, Mr Heaton, who worked their talent on me. I would also like to thank my wonderful teachers at college who saw me through to the end and to the wonderful nurses and dieticians who were there for me day and night with a shoulder cry on. You are my hospital family. I LOVE U ALL!

Marisa

Marisa

I am a Sagittarius being born right before Christmas in 1976. I was jaundice at birth but healthy or so they thought. Shortly after my birth we traveled to Wisconsin to visit my Grandma. While we were there my big sister became sick. My mom took my sister to the clinic and took me along. There wasn't a reason for my mom to have taken me along as my Grandma could have watched me, but she did. After the doctor treated my sister she asked my mom if she could look at me. The doctor looked at me, left the room, and returned with a colleague. The doctor told my mom that something might be wrong and that I might need surgery. My mom wasn't alarmed by this and when we left, the doctor told her to have me seen by my pediatrician as soon as we returned home.

We did go to the pediatrician and we were sent straight to Children's Hospital-St. Paul. I was then diagnosed with biliary atresia and had the kasai on March 9, 1977. I was in and out of the hospital for a few months but things stabilized and I got better. From then on I experienced only a few side effects due to biliary atresia. My spleen was huge and I itched constantly. I had blood drawn and saw the doctor every 6 months. I was doing quite well.

When I was about 7 years old and in 1st grade things changed. I returned home from school unusually tired but I don't think I acted more tired. After eating dinner, I laid down in my parents bed for a nap. A while later I woke up with blood every where. I had bleeding varices. My mom called 911 and I was whisked away to the hospital. After some time in the hospital I was sent home and things went back to what they were before.

My spleen continued to grow and finally when I was 10 yrs old the decision was made to try and relieve me of the spleen and all its complications. My surgeon tried, I believe for the first time, a procedure in which they tried to shrink(embolize) my spleen. The goal was to make it smaller so the pressure and size would go down. The first attempt was unsuccessful as the vein they needed to use kept having spasms and they were unable to get up into the spleen. A few weeks later they made a 2nd attempt. The procedure was, they were going to shoot some kind of styrofoam into the spleen to kill part of it. When they did this they shot too much and killed almost the whole spleen. They had no choice but to remove my spleen because too much damage was done.

I was discharged from the hospital but when I returned for my follow up appointment with my surgeon it was realized I was getting sick. I was readmitted to the hospital. I still remember being so tired I could barely walk. I had to stop to rest many times as we walked across the street to the hospital. I would take a few steps and then sit down to rest. Once admitted it was realized that I was in liver failure. I was put into the PICU and then the decision came that I needed to be transferred to another hospital. I was not happy about that but my only hope was a liver transplant which could only take place at the University of Minnesota.

So, I was transferred and the waiting began. I was plagued with unexplained fevers, ascites, pancreatitis, and varices as I waited. My varices were so bad I was not able to eat by mouth at all. I was fed through my central line. My name could not stay on the transplant list until I was fever free for at least 2 days. Every time I made it 2 days with no fever, they would put my name back on the list but shortly after the fever would return. My name was on and off the list several times. After lots of research on my doctors part I was finally diagnosed with CMV. I was put on an experimental drug (I did not fit the study criteria so the only way we could get the drug was for my doctor to fill out piles of paperwork) and finally my name was on the list to stay.

In early April there was a liver available for me. A few hours later we were told the devastating news that the parent had changed their mind about donating. There was no transplant that day and the waiting continued. The end of April was my mom's friend's birthday and I was getting out on a day pass to go to the party. Before we were to leave the transplant surgeon came into my room and told us there was a liver available. I asked right away if I could still go tot he party but of course the answer was NO. I thought we could go and come back and then have surgery...oh the mind of an 11 yr old. I received my liver in the very early hours of the following day.

I was in the PICU for about a week. I battled CMV again along with other minor infections. That first year I was in and out of the hospital a lot for various things but each year got better. My recovery was slow and bumpy but I got through it. My life was saved and life got better.

About one week after my ten year transplant check-up things took a slight turn. I began itching uncontrollably and my eyes turned slightly yellow. I was living in Iowa at the time so I went to the ER and had labs done. I was devastated when my LFT's came back in the 600 and 700's. I was immediately sent home and admitted into the my transplant hospital the next morning. Lots of blood work, 1 med change, and 3 biopsies later I was diagnosed with choleostasis. We were told it isn't that uncommon for it to happen after being post transplant so long. I got my first PICC line and returned home and too work on 2 IV meds and one oral med. Three months after the first set of devastating labs things were returning too normal and my PICC line was removed.

Currently I work with special education children and LOVE it! I compete in the Transplant Games each year, and I continue to provide support to families of children with biliary atresia or a liver transplant. I volunteer for my ALF chapter and my OPO. I also coach Special Olympics. My life is full and I love it!

I also have been able to meet and get to know my donor family. Jeremiah is always with me and I continue to correspond with his family to let them know how much I appreciate the decision they made. I am fortunate to have been given Jeremiah's gift.

A special THANK YOU to all the CLASSy people here and to all my doctors and nurses. Without my awesome care team I would not be where I am today!

Smiles, MARISA

Marisa H.

Marisa H

by her parents, Frank and Shannon

Our journey with Marisa has been full of hills and valleys, but through it all we've been so blessed to be the parents of such a sweet little girl. She was born in February 2003. She is dearly loved by her big sister Camille and big brother Jackson. Marisa's birth was aired live on the Discovery Health Channel. Shortly after birth she began to look a little jaundiced. Not bright yellow, but not pink. When she was 5 weeks old, we discovered that she had inguinal hernias. I was devastated that my little baby had to have surgery. She sailed through it with no problems at all. During the next 2 weeks her color got much worse. She turned almost orange and the whites of her eyes were dark yellow. At her 8 week check up with the pediatrician he was able to feel that both her liver and spleen were enlarged. He immediately sent us to the lab for blood work. The call came the next morning that we had to get to the hematology department at Children's Hospital of Michigan. She needed to be seen immediately. The next week was filled with a lot of tests, a lot of waiting, and countless prayers.

She was admitted the following week and a liver biopsy was scheduled. After the longest 3 hours of my life, the surgeon called and said that she had a rare liver disease called Biliary Atresia. She did not have a biliary tree or bile ducts on the outside of her liver. He would be performing a Kasai procedure which involved attaching a section of her intestine to her liver with the hope that her liver would be able to drain and function properly. We knew at this point that she had about a 75% chance of needing a liver transplant eventually.

Marisa recovered rather quickly from surgery. She was close to being discharged when she started showing signs of infection. The next thing we knew, she was back on the respirator. She kept getting sicker and was in renal failure. The site of infection was unknown and they had to perform emergency surgery to open her abdomen back up and make sure the liver was not the source. They didn't find anything inside and she continued to get even sicker. She was eventually put on the oscillator because the traditional respirator wasn't strong enough. Within a few days we were told that she was in septic shock. Finally, the infection was identified and the proper antibiotics were given. She spent a total of 28 days in the NICU. During that time we witnessed many miracles and answered prayers with Marisa.

Throughout the next few months she seemed to be doing quite well. In July, our GI referred us to the University of Michigan Pediatric Liver Transplant Team for evaluation. At that time they did not feel that she was ready for transplant. Her liver function was good. The focus was going to be on nutrition and getting her weight up. In August she got a cholangitis infection and was hospitalized for 5 days. Her liver function returned to normal and she started growing better. In October/November she was hospitalized 3 times in 3 weeks. On November 12 she vomited blood and was taken by ambulance to the local hospital and then transferred to U of M once she was stable enough. A scope was done which showed that she had esophageal varices. At this point, we were told she would be listed for transplant. We thank God for the peace and relief that he gave us with this decision.

We spent one year waiting for the call to come. During that year, Marisa endured numerous hospital stays, cholangitis infections, and after a mass was found on one of her adrenal glands she was even evaluated for a cancer called neurobastoma. Thankfully the results were negative.

In November 2004, we received a call informing us that Marisa had a liver awaiting her. A family who had lost their child had made the heroic decision to donate what our child so desperately needed. Their difficult decision will enable our daughter to soon celebrate her second birthday and have a chance at a normal life. We will forever be grateful for this tremendous blessing bestowed upon our family.

We would like to acknowledge the tremendous support we’ve gotten from Mott Children’s Hospital at U of M in Ann Arbor, MI. The doctors, nurses, and support staff have been simply wonderful. Special thanks goes to family and friends who have been so supportive throughout the past two years. Above all, we praise God for his tenderness and mercy.

Marlee

Marlee

by her parents, Lance and Holly

Marlee June was born in September 2001. She was a full term baby without any delivery problems, except being delivered so fast it almost gave her dad a heart attack! She was diagnosed with biliary atresia on November 1 and had her Kasai on November 8, exactly 8 weeks after being born. Marlee recovered very well and spent 9 days in the hospital. Ever since her Kasai all of her liver and bilirubin tests have shown improvement, however she had to spend 5 days in Children’s Hospital in Denver with a possible bout of cholangitis. Marlee continues to be an inspiration to both her parents and her very large extended family, and has a smile which lights up a room for anyone she meets.

Max

Max

by his mother, Jennifer

Max was born in May 2000. He started out pink but gradually got jaundiced and wasn’t gaining as much weight as he should. So we were advised to take him to a children’s hospital when he was about 2 months. He was then diagnosed with biliary atresia at 2.5 months and had his Kasai at 3 months. At first, they didn’t think it was working because he had a tough case of cholangitis and almost didn’t pull through. But he recovered and was eventually able to have good bile flow.

He was doing pretty well until he was about 11 months and had some major bleeding from esophageal varices. He had to be rushed to the hospital by ambulance, but he made a good recovery after a few days. The hospital then decided to put him on the transplant list as a status 3 because of the bleeding that had occurred and because of some ascites he had from the portal hypertension. He was then on the transplant list for about a year as a status 3 and only had a couple of hospitalizations for minor problems. At that point, the hospital decided to inactivate him because he had been doing so well! So thank God for that!

Today he is a happy, energetic 2-year-old who likes chocolate cake as you can see from his picture! He now has a 7-month-old baby sister, and they are still learning how to get along. Max finds everything fascinating to him as his favorite expression is “Wow.” And that’s how I sum up his life- wow!

Melissa

Melissa

by her mother, Sharyn

C.L.A.S.S. Notes Winter 2000

Where have the last 21 years gone? They have really flown by. It doesn’t seem like 21 years since I brought Melissa home from Children’s Hospital in Los Angeles after being diagnosed with extrahepatic biliary atresia.

Melissa was born in San Dimas Hospital in San Dimas, CA in June 1979. She came 3 weeks early. She was supposed to be my Fourth of July little firecracker. I guess I should have known then she would take me on a ride of a lifetime.

Melissa was diagnosed at two weeks and had the Kasai at four weeks. While in surgery I remember her pediatric GI, Frank Sinatra, MD, telling me there was only a 25% chance of the surgery working and even then she probably wouldn’t live beyond her second birthday. I remember praying the medical field would come up with a breakthrough during those two years.

Melissa had an open Kasai with a stoma and ostomy bag. At first I was afraid I would not be able to reinsert the bile back into her double barrel stoma. By the time we left the hospital I was giving lessons to the nursing staff.

The first six months she was in and out of the hospital with dehydration problems. Melissa weighed six pounds when she was born, 10 pounds at 3 months and at 6 months she weighed 10 pounds. The bile salt would stick to the lining of her ostomy bag and she would get dehydrated. Her pediatrician, Dr. George Madanat, came up with the idea to add salt to her diet and it worked.

At one year, Melissa looked and acted like a normal one-year-old and weighed 20 pounds. She only had one bout of cholangitis at 18 months.

By the time Melissa was almost 3 years old, she was putting out 1,000cc of bile a day. The reinsertion took about 6 hours each day (4 times a day). I asked Dr. Sinatra if we could have her stoma closed. I wanted Melissa to start nursery school and she couldn’t with the ostomy bag. Also, with the bag it was hard for her to wear dresses. After the closure I went out and bought her 18 dresses.

From age 3 on, Melissa seemed like a healthy child. There were always blood tests, but they usually fell around the normal range. I always wanted Melissa to experience everything a healthy child did. From an early age she took ballet, swimming, horseback riding lessons and gymnastics.

Today, she only has blood work done once a year. For some strange reason her liver function results are a little higher in the summer months, but come down to normal in the fall. She started taking Actigall in her early teen years and I’m sure it’s helped keep her liver numbers in the normal range.

Melissa is now a junior at Sacramento State University. She’s a communication major, which fits in perfectly with her gift of gab. She’s not sure what she wants to do when she graduates, but I know she will do well at any career she pursues.

There have been some rough patches along the way, but I wouldn’t trade a minute of having Melissa in my life. She has brought me so much joy. I am happy to say she is one of my best friends.

Michael

Michael

My name is Michael and I am 9 years old. I was born with biliary atresia and had a Kasai operation when I was 5 weeks old. I was in and out of the hospital during the first two years of my life with fevers caused sometimes by cholangitis attacks. My doctor who I now see on a yearly visit is Dr. Taxman. He is a good doctor.

I am doing great and enjoy many outdoor sports. I like roller-blading, swimming, bike riding and baseball. In my spare time I also like to play with my friends, play Gameboy, and watch videos.

Live everyday to the fullest!!

Michael B.

Michael B

by his mother, Barb

Our son Michael was born in October of 1980 in rural southwestern North Dakota. He joined his older sister, Amanda, and we felt we had a complete family. We discovered Michael had biliary atresia within three months of his birth. The first year of his life was difficult to say the least, but we made it through the Kasai procedure and the minor setbacks that he had throughout the next 12 years. In February of 1994 it became very obvious that Michael's condition was worsening and he was moved up in priority on the transplant waiting list.

Michael finally got his transplant in May 1994, at the University of Minnesota Hospital in Minneapolis when he was 13. When I think back to that time I realize that if he had not had his transplant when he did, he would not have lived to see his 14th birthday. He had several minor complications during the first few months after his transplant causing him to be hospitalized each time, but he has since done very well. In 1999 he graduated from high school and is now taking classes at a local college. He struggles with learning disabilities but he is enjoying the college life. He also enjoys sports although he was never able to be active in them before his transplant. In fact he only learned to ride a bike after his transplant. He likes being around little kids and has lots of little cousins who come to see him.

An interesting side note is that we were able to meet our donor family shortly after Michael's transplant. The family lost their precious little girl, Joyel, in an accident where she sustained a fatal head injury and they decided to donate her liver, kidneys and heart. A few months later, they appeared on a short news story with a Minneapolis TV station on the importance of organ donation. After consulting with the transplant center, we were approached to see if we would be interested in doing a segment as a recipient of their child's organ. Of course we were most interested in doing this. It was very tastefully done and we met the family soon after our segment aired on TV. We have since been to their home several times and they have been to ours. They attended both of our children's graduations. We are very good friends and we consider them part of our extended family. It gives them great joy to see how well Michael is doing. We have also met one of the kidney recipients and are friends with them, too. This is a highly unusual thing to happen as most organ donors families and recipients do not meet. In our case, however, it has been a wonderful blessing and we feel very fortunate indeed to the donor family in our lives.

Miranda

Miranda

Miranda was born with biliary atresia and polysplenia syndrome. She never had the Kasai procedure, instead she went straight to the transplant list. She received her new liver in May of 1995, at the age of 5½ months. Miranda's spleen is very enlarged possibly due to portal vein thrombosis which was first suspected 2-3 years post-transplant. She wears a custom made spleen guard whenever she rides her bike or engages in physically active play. Overall, Miranda is healthy and doing really well. She takes ballet and art classes. She goes to preschool 3 mornings per week and is looking forward to Kindergarten.

In 2004, Miranda developed portal vein thrombosis causing a low white blood cell count and an enlarged spleen. Despite these issues, she lives a full, happy life.

Molly

Molly

Molly was born in Haywards Heath, West Sussex, UK in May 2003 by c-section (planned). She had an apgar score of 9 across the board and was a great 7lb, 13oz - a very content little dark-haired baby.

Molly became slightly jaundiced on day 2 and by day 5 was pretty orange! It turned out she had ABO incompatibility, which I cursed at the time. So she had intensive therapy and a spell in SCBU on a drip for fluids.

On day 9 we were sent home with her bili levels coming down nicely. Our consultant was continuing to monitor her, but the consensus was that Molly had "sludging" of old blood cells clogging up her system, remnants from the ABO problem. However, her bili levels were changing and the "conjugated" part was being stubborn. Her stools were pale, but this was only picked up by me and not brought to their attention early enough.

One week later, the levels did not come down at all so on the following Monday we went up to Kings College Hospital in London for a good investigation. It was pretty clear from the outset that they suspected biliary atresia even though Molly was hardly jaundiced and had not lost weight at all. They even gave us the paperwork! We returned the next day for a liver biopsy. The results came through on the Thursday and we went up on Saturday.

Molly had her Kasai on the next Monday. The operation took 6½ hours and, although I thought we would be nervous wrecks, it was more of a relief to get it done - it was, after all, the only option. When we spoke to the surgeon, Mr. Davenport, it seems that she had classic biliary atresia - her gall bladder was a little lump rather than a bag and her bile duct system was shriveled. However, there was only minor damage to the liver, "nothing irretrievable" were his words. We were really happy - in fact I was ecstatic! It was the outcome I didn't dare hope for.

Molly recovered amazingly well, with no setbacks, and we came home the following Tuesday. She started regaining weight well although she was a little reluctant to finish her feeds, so we came back with an NG tube to "top her up." It became very useful for her medicines that she hated so much. The tube came out that weekend.

We had a check-up 1 months post Kasai and Molly's billi levels were at 87 and she was still visibly yellowish. I know the way these units are measured differs here in the UK. She was 168 at the time of the op and Mr. Davenport, the surgeon, says that children whose levels are around 20-30 do really well with their own livers. We go for our next check up in November, which will be 6 months post Kasai, and we hope that her levels will have settled by then. The surgeon was extremely happy with her and since then she is nearly always "pink" and her nappies are looking pretty normal most of the time. Fingers crossed for good levels in November!

She continues to do really well and is putting on weight steadily. She is a little below weight, but not much. She just needs to regain the weight she lost when she had the op (going nil by mouth tends to do that!).

Molly is currently getting over chickenpox - which she has taken in her stride. She is a really happy little girl and my other daughter, (Daisy age 4) absolutely adores her. Molly very rarely cries and although she doesn't sleep through the night she feeds quickly, winds, and goes back to sleep without any fuss - 10 minutes max!! I think I can cope with that........

I would love to hear from any and all.

Lucie, Shaun, Daisy and Molly

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