Biliary Atresia: Letter B - C

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

Brandon

Brandon

by his mother, Sonita

Brandon was diagnosed with biliary atresia when he was two months old. The Kasai procedure was performed, and as weeks went by we found out that it was not successful. But we didn't give up the fight, and neither did Brandon. We kept the faith and never stopped praying. We were told that Brandon would probably need a liver transplant before he reached his first birthday. Yet, in spite of his liver disease, Brandon was a happy and playful baby.

As time went on, my husband and I found out that one of us could be a donor for our son. Immediately my husband, Henry, wanted to be the donor. He had a number of tests done and God blessed him to be a perfect candidate.

In the early part of December 1997, Brandon suddenly began to show serious symptoms of cirrhosis. Unknown to us he had developed esophageal varices and one day they started to bleed. We rushed him to the hospital. After the bleeding was under control, our doctors told us it was time for Brandon to be transplanted.

Brandon received his living-related liver transplant on December 15, 1997, at Children's Memorial Hospital in Chicago. At the time Brandon was five months old.

Brandon has grown into an energetic little boy who gets into everything. He loves keeping up with his older brother, Henry. Everyday, as I sit back and watch him race around the house laughing and playing like any normal child, I smile and thank God for my blessings. Brandon is truly a little miracle.

To parents who may be going through a situation with an ill child, I encourage you to keep the faith. I pray God will strengthen you and take care of your situation.

Brandon

by his Mom, Carrie

Brandon was born in April 2000 in Racine, Wisconsin. When he was born we were told that he was a happy healthy baby boy. We were so excited. We now had two children, Brandon and his older sister Toni; she was two at the time. When Brandon was about 9 weeks old my husband took him to the doctor for a common cold that just didn’t want to give in. Brandon also looked yellow to me. Although my husband thought it was just my imagination, I asked him to talk to the doctor about it anyway.

The next day we got a phone call from the doctor telling us that we needed to take Brandon to a GI doctor that day to get checked over. Within a few days Brandon was diagnosed with biliary atresia and getting the Kasai done. Brandon was only 10 weeks old at this time.

By the time Brandon was 5 months old we had him on the donor list. Brandon had his transplant in October of 2000. He was only 6 months old. He spent almost 3wks in the hospital. It was the worst time of my life. He looked so fragile. I couldn’t even hold him for almost a week. The only thing he could do was rub my check. It made my heart break. To this day when he isn’t feeling very well and is cuddling with me he rubs my cheek.

Brandon is now 5 years old and is doing wonderful. He is now only on one med, which is excellent, considering he was on 12 meds at one time in his life. He is a very energetic and rambunctious little boy. He loves school and hates the fact that he only gets to go to school for a half of a day and not all day like his older sister. I always tell him next year when he is in first grade he will go all day. He loves to help me with his younger sister who is only 8 months old. He loves to read, play games and go outside. He now only sees the specialist every 6 months and gets lab work up done every 3 months.

I thank God everyday for the donor family and for every day we have with Brandon and our other children. Please know that Brandon is a success story and if you are in the same situation we were just a few years ago. There is hope and support for you and your family.

Brianna

Brianna

BriAnna was born with biliary atresia and received her liver transplant (a split liver) just a few days after her 1st birthday. She had one complication that had to be fixed with surgery, but she's had no rejection episodes. She's 18 months old now and doing great.

BriAnna started walking much sooner than her family thought she would and she hasn't slowed down since. Her mom, Amy, says "BriAnna plays all day non-stop and gets into everything! She's a spit-fire!" She enjoys swimming, reading books, and going to playgroup.

Brianna Rose

Brianna Rose

by her mom Karla

Brianna was diagnosed with biliary atresia at 9 weeks in August of 1998. Within days she had her Kasai. It was immediately evident that Brianna would be one who would struggle with her Kasai to work. Within 4 days from her release after her Kasai, she had her first case of cholangitis and was back in the hospital. Brianna has had, including her first stay up through her transplant, 35 hospitalizations for everything from cholangitis, blood infections, RSV and severe anemia. Brianna was transplanted, after a year on the waiting list, in April 2001.

Brianna has had some complications post transplat, but nothing that we feel we can’t overcome. After all, even though we traded “one set of problems for another,” as they often tell you during transplant evaluation, the difference that someone’s gift of life has made for Brianna is totally remarkable and miraculous. We will forever be grateful to our donor family and hope one day we get the chance to meet them.

Bridgett

Bridgett

by her mother, Mashawn

Bridgett is doing well and is almost 6 years post-transplant. She is picky about what she eats and is still very small, but she is a normal 6-year-old who really enjoys life. She rides in horse shows and is very active with her 4-year-old twin brothers. Nothing slows her down! Her father and I have never limited her to anything. She is our angel and we remind her of it daily. The road has been rocky, but we wouldn't change any of it because we have Bridgett in our lives.

 

Brittany

Brittany

by her mother, Kim

This is a story about my daughter's life. Brittany was born in January 1995 with jaundice. She was a very happy baby, but she always seemed to be hungry. We went to the doctor every 2 weeks because of her poor weight gain. Although she ate a lot she had a big belly and very, very tiny legs and arms. By the end of March, we had blood tests ran. Two weeks later, we were told that her bilirubin was extremely high and we were referred to the children's hospital in Pittsburgh, PA. It took about a day to find out what was wrong. It was biliary atresia and she had a Kasai done on April 7.

Her operation went great. Afterwards, she was in and out of hospitals numerous times. When she was six months old she was put on the transplant list, even though she didn't really need one yet.

Her Kasai worked until she was 4 years old. In January, 1999, our doctors told us she needed a new liver soon. We considered a living-related transplant. Her dad went through a number of tests was the perfect match. In March 1999, Brittany had her transplant. It worked for about a week and then started to fail. She was immediately put back on the waiting list. Finally she got another liver. We were in the hospital for about 2 months. She went to rehab to learn to walk, talk, sit-up, and eat again. She has been doing great ever since.

We thank God every day that we have Brittany, because she could have been taken away from us. We also thank our donor and donor family. Brittany wouldn't have been saved without their decision to donate. I know it must be hard when your child just passed away and you are asked if you would donate their organs. We thank them every day for saying yes.

I could write so much more to this story, but my point is I never thought of organ donation until it was our child. People need to think of it that way. What if that was your child lying in the hospital bed and there was nothing you could do except hope and pray someone said yes in time? Please reach out your heart and be a donor.

Brooke

Brooke

by her mother, Kersten

Brooke had her transplant (living donor) in April 1995 at 9 months because of biliary atresia. As for the next chapter of her life, that's been on-going. Brooke has had many trips to the ER in the 5 years since her transplant. She's had pneumonia so many times I don't keep track. There's so many health issues with her but she still keeps ticking. Brooke is an angel and a very strong little girl. I cherish each and everyday I have her.

Brynn

Brynn

by her mother, Tiffany

Our daughter Brynn was born in March 2000 and was jaundiced on the first day of her life. We assumed this was normal neonatal jaundice and were surprised at how much blood work was being ordered by our pediatrician. By the second day of her life, a neonatologist sat down with us and explained the difference between conjugated and unconjugated bilirubin and why Brynn’s blood work was concerning. Scary phrases like "possible metabolic disorder," "biliary atresia," and "cystic fibrosis" were being hurled our way. More tests were ordered. I remember someone coming in and saying to me "Well, we’re not putting her on the transplant list YET." I couldn’t believe what I was hearing. We were devastated!

From the beginning, Brynn’s condition didn’t seem to fit the mold of any known disease. By the time she was 8 days old, her liver was already so badly scarred that the biopsy sample crumbled apart when extracted. Because of the extensive fibrosis, it was difficult to diagnose the underlying disease, but after hearing "Congenital Hepatic Fibrosis" and "Caroli’s Syndrome", we were eventually advised that Brynn’s disease was most likely a variant and severe form of intrahepatic biliary atresia. In any case, it was obvious to everyone involved that the Kasai operation would not help her and that she would most likely require a transplant within the year. We listed her in June of 2000 at Pittsburgh Children’s Hospital as a status 3. We were told that we were really lucky that her blood type was A+. When we listed her, she was already first on the list for her size and blood type. We expected a call any day. She was not gaining weight very well, but she was playful and happy like any other baby and we just assumed that she would be transplanted before she got really sick.

Unfortunately, her health really began to deteriorate when she was about 4 months old. She had terrible problems with blood clotting that we kept under control with weekly Vitamin K shots. She then began to develop ascites which became very severe. Her abdomen was extremely distended and varices were prominent all over her belly. It was so painful to see her this way. She was so uncomfortable, she stopped smiling and playing and basically just sat in her infant seat most of the day. In early September, she was admitted to CHP for IV Lasix and albumin to help alleviate the ascites. While we were there in the hospital, her esophageal varices burst and she started to vomit blood across the room. She was rushed to the operating room where the bleeding was controlled.

We were then told that it was very unlikely that she would be leaving the hospital without a new liver. We inquired about living-related donation, but our transplant team suggested that we try and wait a little while longer. Dr. Reyes, the head of the pediatric liver transplant team at CHP, even confessed to us that since we had been there, he had been offered at least 3 livers for her, but he had turned them all down because he didn’t feel they were the right fit. We were stunned when he admitted this, but his confidence that the right liver would come along was very comforting.

And thankfully, Dr. Reyes was right! A few days later, we were notified that a donor organ was available and suitable for Brynn’s tiny 10-pound body. She went into surgery at 5:30 p.m. and emerged 12 hours later a whole new baby! It was a miracle to see her recover and witness the changing of her skin tone and to finally see the whites of her beautiful blue eyes. Our most memorable moment was seeing her smiling and laughing again just one week after her transplant.

At 8 months post-tx, Brynn is absolutely full of life! Currently, she most enjoys playing peek-a-boo and giggling with her big brother Evan. We feel so fortunate to be able to enjoy our days with this beautiful, strong and happy baby girl, and we are forever grateful to the family of the child whose liver saved her life. We are also so very thankful to the transplant team at CHP – the level of skill and commitment in that group continues to amaze us!

 

Update: February 2005

 

Brynn is now almost 5 years old. She attends preschool, ballet classes and martial arts. She is very artistic and loves to draw and paint. Her life is really quite normal. People are simply amazed to learn of the rocky start she had in this world. We feel blessed!

Our daughter Brynn was born in March 2000 and was jaundiced on the first day of her life. We assumed this was normal neonatal jaundice and were surprised at how much blood work was being ordered by our pediatrician. By the second day of her life, a neonatologist sat down with us and explained the difference between conjugated and unconjugated bilirubin and why Brynn’s blood work was concerning. Scary phrases like "possible metabolic disorder," "biliary atresia," and "cystic fibrosis" were being hurled our way. More tests were ordered. I remember someone coming in and saying to me "Well, we’re not putting her on the transplant list YET." I couldn’t believe what I was hearing. We were devastated!

From the beginning, Brynn’s condition didn’t seem to fit the mold of any known disease. By the time she was 8 days old, her liver was already so badly scarred that the biopsy sample crumbled apart when extracted. Because of the extensive fibrosis, it was difficult to diagnose the underlying disease, but after hearing "Congenital Hepatic Fibrosis" and "Caroli’s Syndrome", we were eventually advised that Brynn’s disease was most likely a variant and severe form of intrahepatic biliary atresia. In any case, it was obvious to everyone involved that the Kasai operation would not help her and that she would most likely require a transplant within the year. We listed her in June of 2000 at Pittsburgh Children’s Hospital as a status 3. We were told that we were really lucky that her blood type was A+. When we listed her, she was already first on the list for her size and blood type. We expected a call any day. She was not gaining weight very well, but she was playful and happy like any other baby and we just assumed that she would be transplanted before she got really sick.

Unfortunately, her health really began to deteriorate when she was about 4 months old. She had terrible problems with blood clotting that we kept under control with weekly Vitamin K shots. She then began to develop ascites which became very severe. Her abdomen was extremely distended and varices were prominent all over her belly. It was so painful to see her this way. She was so uncomfortable, she stopped smiling and playing and basically just sat in her infant seat most of the day. In early September, she was admitted to CHP for IV Lasix and albumin to help alleviate the ascites. While we were there in the hospital, her esophageal varices burst and she started to vomit blood across the room. She was rushed to the operating room where the bleeding was controlled.

We were then told that it was very unlikely that she would be leaving the hospital without a new liver. We inquired about living-related donation, but our transplant team suggested that we try and wait a little while longer. Dr. Reyes, the head of the pediatric liver transplant team at CHP, even confessed to us that since we had been there, he had been offered at least 3 livers for her, but he had turned them all down because he didn’t feel they were the right fit. We were stunned when he admitted this, but his confidence that the right liver would come along was very comforting.

And thankfully, Dr. Reyes was right! A few days later, we were notified that a donor organ was available and suitable for Brynn’s tiny 10-pound body. She went into surgery at 5:30 p.m. and emerged 12 hours later a whole new baby! It was a miracle to see her recover and witness the changing of her skin tone and to finally see the whites of her beautiful blue eyes. Our most memorable moment was seeing her smiling and laughing again just one week after her transplant.

At 8 months post-tx, Brynn is absolutely full of life! Currently, she most enjoys playing peek-a-boo and giggling with her big brother Evan. We feel so fortunate to be able to enjoy our days with this beautiful, strong and happy baby girl, and we are forever grateful to the family of the child whose liver saved her life. We are also so very thankful to the transplant team at CHP – the level of skill and commitment in that group continues to amaze us!

 

Brynn is now almost 5 years old. She attends preschool, ballet classes and martial arts. She is very artistic and loves to draw and paint. Her life is really quite normal. People are simply amazed to learn of the rocky start she had in this world. We feel blessed!

Caden

Caden

When Caden was five weeks old, I was introduced to the world of biliary atresia. Caden had trouble gaining weight. At four weeks old, I noticed that the whites of eyes were yellow and then I really noticed his skin was yellow too. The doctor that had been following him since birth decided to get some lab work done. Once the results were in, the doctor sent us to a much larger hospital.

At six weeks of age, Caden had a nontraditional Kasai done using his gallbladder. After about five weeks it was apparent that this was not a success. A month later he had the traditional Kasai. Unfortunately, it worked for just a month and Caden began having several bouts of cholangitis.

Recently, Caden was evaluated for a liver transplant. I am hopeful that he will receive his gift soon. All that we have been through God has been right beside Caden. I know He is helping use and He will go the distance with us.

Caleb

Caleb

Caleb received a liver transplant at the tender age of seven months because of biliary atresia. He was very sick before his transplant and his doctors call him the "miracle baby." His family is very grateful for his second chance for life. Caleb has done very well since his transplant and is busily catching up with on his weight and motor skills. He has been hospitalized just once since his transplant. He was on CellCept for a while, but has since been weaned off, without complications.

Calista

Calista

by her father Vidhvandika

Calista was diagnosed with biliary atresia when she was 3 weeks old following initial symptoms of jaundice and pale stools. A few days after the diagnosis, Calista had the Kasai procedure and her gallbladder was also taken out. Thank God that the operation was successful. Calista's early years of life were tough. She has been admitted to the hospital five times for the treatment of cholangitis. During on of her admissions she also had her hernia repaired. Calista is now 3 years old. She is a very happy and cheerful girl. She likes to read, sing, and dance. The doctor was pleased with her progress and her liver function is normal. She is still on Ursodeoxycholic Acid and vitamin ADEK. With biliary atresia, each day with Calista is precious for us. We came from Indonesia and it was a blessing in disguise that Calista was born, diagnosed, and treated in Australian while I am pursuing my study here. She has received the best medical treatment in Australia. We will be going home to Indonesia soon. Our going home will be a concern for Calista's health, but we have faith that God will always take care of Calista.

Carly

Carly

by her parents, Amy and Brad

Carly was diagnosed with biliary atresia when she was 8 weeks old. The Kasai Procedure followed which, unfortunately, was unsuccessful. She also had umbilical hernia repair at the time of her Kasai.

She was placed on the transplant list at the University of Wisconsin - Madison, and after a 9 month wait, Carly received her gift of life when she was 14 1/2 months old. During her liver transplant, she also had an ilial cyst resected, her umbilical hernia repaired again, an appendectomy, and a cholecystectomy (she had the typical BA undeveloped gall bladder).

Carly's donor family will always hold a special place in our hearts. Without little Felicia's gift, we wouldn't have our spunky little 6-year-old here with us today. We are so blessed and have met our donor family and continue to keep in contact. We also want to acknowledge all the donor families out there who chose to give the most precious gift that anyone could ever give.

Carly's doing great! She's our sunshine (and spitfire!). She'll be in first grade in the fall of 2004. She had a tonsillectomy and adenoidectomy in the spring of 2004 because of sleep apnea. She's severely allergic to dogs, cats...anything with dander. She is showing some mild symptoms of learning disabilities that we are monitoring closely. But other than that, she's down to only one med and enjoying life to the fullest!

We never know what the future holds, but we know we're here today, and we're enjoying every minute!

Carson

Carson

by his parents, Rhonda and Travis

Carson arrived in April 2001 and we joyfully spent the first 4 weeks of his life at home. When he became jaundiced at 4 weeks, we began testing, which led to the diagnosis of biliary atresia at 7 1/2 weeks. During this time we also discovered Carson had a heart defect, double outlet right ventricle, and was a carrier for Alpha 1 Antitrypsin Deficiency. Carson did well the first few months post-Kasai.

By September his liver function tests had begun to elevate. The decision was made to repair his heart defect, sooner rather than later, as it would need to be fixed before a looming liver transplant. His open-heart surgery was October 23, 2001. He sailed through heart surgery. However, his liver did not like the stress and he went into acute liver failure. Over the next weeks his total bilirubin soared to 35 and he went into acute kidney failure (due to the liver failure). Twice we tried to do a living donor transplant with me (Mommy) as his donor. But both times Carson spiked temps and the surgeries had to be canceled.

December 2001 Carson received his gift of life. We are eternally grateful to our donor family for the ultimate gift. Words can not convey the gratitude and thanks we feel and they are never far from our thoughts and prayers, along with their little angel.

We are so thankful for the talented medical staff that cares for Carson. He recently turned two and is a spirited and independent little boy. He loves “Blue’s Clues,” coloring and playing outside. Because of the medical stress he went through, Carson has a mild-to-moderate hearing loss and has had hearing aids since December 2002. He is doing wonderfully with his aids and also knows a number of signs.

Carson is truly a miracle boy and is the product of many, many prayers. Special thanks to our CLASS family for their love, support and prayers as well!

Carter

Carter

by his grandmother, Jean

Carter was born in November 2000 at Children's in Chicago. He weighed 9 lb. 3 oz. and was 21 inches. long. He was born with biliary atresia and his Kasai was done when he was 20 days old. His Kasai didn't work. His doctors wanted him to grow a bit more before his transplant and he has had monthly checkups since birth. They are in awe that he has done so well. He is now 22 lb. and 28 in. and is scheduled for transplant on December 5. Both of his aunts were tested to be live donors, but to no avail. Carter's mom, Pam, is a perfect match and will be his donor. It has been a pins and needles year and from what I understand, we are at only the tip of the iceberg with all of the aftermath of transplant ahead. Carter began walking at 9 months and never seems to sit still. He is interested in balls, wheels, cars and books. They tell us he will be even more active and happy after transplant, but it is hard for us to imagine what we will be in for if anymore activity occurs.

Casey Jade

Casey Jade

by her dad, Mark

Casey Jade was born in May of 2001. She was full term and, other than almost being breech, she had a normal delivery. She was diagnosed with biliary atresia at 7 weeks and had a Kasai. She recovered well from the surgery and went home after one week in the hospital. Her tests have started to show improvement and her color is getting better.

We love our little girl very much as do her brothers, Travis & Jenner, and her sister, Tori. She loves her bouncy seat and swing and watching her brothers and sister play around the house.

The first time Casey ever smiled for her daddy was in the hospital, five days after her Kasai.

Cassady

Cassady

by her mom, Andrea

Cassady Michele was born in June 2000. She was a full term baby with no complications and appeared to be healthy as can be. She became jaundiced while we were in the hospital but I was told that it was normal and would pass in a week or so.

By the time Cassady was 4½ weeks old she was still jaundiced and even though everyone was passing it off as normal, I made an appointment with her doctor. It also bothered me that her stools were really pale and not like my son's when I nursed him as an infant. Her doctor was baffled and decided to run a series of blood tests to find out why she was still jaundiced. That same day I received word that Cassady's unconjugated bilirubin was somewhat normal; however, her conjugated bilirubin was extremely high. We were referred to Cincinnati Children's Hospital and instructed to go there the next day to have an ultrasound done and to meet with the GI specialist. When we met with the GI doctor we were told that our daughter had biliary atresia and unless she had surgery right away she might not make it. Two days later she had a liver biopsy and then had the Kasai done. I have never been so scared in my life. One minute I had a healthy little newborn and in the next it was all taken away. After about 10 days in the hospital she was able to come home.

Since her homecoming it has been an emotional roller coaster. Every time she gets an unexplained fever she ends up in the hospital for a few days to rule out ascending cholangitis and then comes home. I worry every day about when her liver will fail and she'll need a transplant. I am going to try to be her living-related donor when the time comes if we are a match. We love her very much and thank God for every day that Cassady is in our lives.

Chelsea

Chelsea

Chelsea was born with biliary atresia and received her liver transplant eight years ago at UCLA Medical Center. She was four years old at the time and very sick. Since her transplant, Chelsea has grown into the picture of health.

In addition to biliary atresia, Chelsea was born with a very rare condition known as "total situs inversus." This means that all of her internal organs are reversed and mirror image. Chelsea’s proud family explains that she is a very special girl with a very special make up.

Chelsea is a good student and will be going into sixth grade next year. Her real passion has always been horses. She even has a horse of her own named Chili. Chelsea’s favorite is barrel racing. She loves to compete and has already been in two horse shows. So far Chelsea and Chili have won six ribbons together!

Chelsea’s mom Vonnie sums it up this way, "Of course we wish she had never been sick, but she’s made us appreciate life so much more. She is the joy of our lives!

Christopher

Christopher

by his mom, Diane

Christopher Mark Sumner was born in February 1983 in Mountain View, CA. He joined brother Michael, then eight, and sister Michelle, five. He was two weeks late requiring induced labor. Our pediatrician, Dr. Ross, joked that he was a little "over baked," but fine overall. Mark and I were delighted with our beautiful little boy.

At Chris’ two week checkup, everything was textbook. He had gained a little weight, was nursing and seemed to be progressing just like our other two children.

It was the day of my six week postpartum checkup with my obstetrician that everything changed. Dr. Pokorny noticed that Chris was jaundiced, so he sent us to see our pediatrician, who in turn sent us to the hospital for blood tests. By the time the lab technician was finished drawing blood from Chris’ tiny heel, I was crying right along with him. I think one of the hardest things we parents must endure is holding our child during a medical procedure.

That evening Dr. Ross called with the results. There was a problem and he wanted Chris in his office immediately. He recited all of the things which can cause jaundice in babies, the worst of which was something called biliary atresia. But, he assured us, this was very rare and probably not the case. More tests were needed. Within an hour, Chris was admitted to Stanford University Medical Center.

Three days and multiple tests later, we were sent home to await the results. We were worried, but hopeful. When the results all came back negative, Chris was admitted again for more tests. Doctors inserted a nasogastric tube into the second portion of Chris’ duodenum to test for bile drainage. None was found, so Dr. Shochat, a pediatric surgeon at Stanford, recommended exploratory surgery. During surgery, a cholangiogram was performed and it showed blockage of the extrahepatic bile duct. This was conclusive proof of biliary atresia. In one minute we went from everything will be O.K. to nothing will ever be the same. I have to say at that point I completely lost it. I remember little of the rest of that day.

Dr. Shochat performed the Kasai procedure, removing the damaged bile duct and replacing it with a short section of intestine. In those days, Kasai procedures were often left open, which meant that the new bile duct was cut in two, and the open ends left exterior to the abdomen (called stomas). This way, bile flow could be observed. An ostomy bag was fitted around the stoma, and twice each day the bile was collected, measured, then reintroduced into the intestinal tract with a catheter through the stoma.

Knowing that increased bile production was our ticket home, my engineer husband plotted a chart of each day’s production to show doctors the improvement. One month after surgery, well trained in stoma care, we were discharged. Amazingly, Chris was a happy little baby and seemed none the worse for the whole ordeal.

Everything went along great for about three months. Then, during a sightseeing trip in San Francisco, Chris started bleeding around the stoma. He was very pale and did not respond to me. In a panic, I opened the ostomy bag, put pressure on the stomas and we rushed to a nearby hospital. His hematocrit was at an acceptable level and the bleeding had stopped, so we were released. The next day he was admitted to Stanford for a blood transfusion. It turned out to be just the first of many to come.

it became a joke in the emergency room — "what is the hematocrit today, mrs. sumner?" i was never off by much.

From that point on, we dealt with bleeds, urgent trips to the emergency room, and transfusions on a regular basis. It even became routine for us to carry Dr. Shochat’s preferred size and type of stitching thread. Soon, I could predict Chris’ hematocrit just by looking at a small birthmark on his upper lip.

It became a joke in the emergency room — "What is the hematocrit today, Mrs. Sumner?" I was never off by much.

We realize now how blessed we were to have had all Chris’ blood transfusions at Stanford. They were checking for the AIDS virus long before the Red Cross blood supply was being routinely checked.

Through all this Chris somehow managed to keep growing and gaining weight. The surgeons at Stanford discussed transplantation with us several times; but, because he was stable, they advised us wait as long as we could.

In late 1984 we moved to Southern California. The decision to move was not difficult. UCLA was the only place in California that performed liver transplants, and our families lived in the Los Angeles area. It was important to us that Michael and Michelle not miss any activities due to Chris’ illness. Without my parents’ help that would not have been possible.

When Chris was two years old, we took him to see Dr. William Berquist at UCLA for a transplant evaluation. Many tests were done and Dr. Berquist spent a great deal of time talking to us about liver transplantation. "But he only has a bleeding problem, can’t we wait?" we asked. The discussion went back and forth. We even took Chris to the University of California at Davis in Sacramento to see Dr. Cox and Dr. Cannon for a second evaluation.

The truth is that no one really knew how long Chris could wait or how much time he really had. Liver transplantation was still a new science. The agonizing decision was ours to make. We chose to wait, not knowing if our decision was the right one. Both evaluation teams agreed there were two signs that would definitely signal time for a transplant: deterioration of the synthetic liver functions determined by blood tests, or if Chris stopped growing. Dr. Berquist agreed to work with us to monitor these signs over the next year.

By the time Chris was 3 years old, he was showing delays due to vitamin deficiencies. He was not talking yet, so we had a speech therapist and home teacher working with him. His liver function tests became worse and his growth slowed, then fell off the charts. We knew it was time.

My grandmother had never seen or held Chris and it was important to me that she did. We understood the urgency of the situation, but we decided to take all the children to St. Louis for a family reunion. When we returned Chris was officially placed on the UNOS waiting list.

By September, Christopher’s health was failing. His stomach was so filled with fluid that he could eat and drink only small portions at a time. We were up at night with him all the time. Mark and I would be so tired that at times it was hard to function during the day. I don’t know how Mark was able work and never let anyone know how bad things were. But he did it. We both did.

As Chris became sicker, I remember telling Dr. Berquist how I felt unable to pray for a liver. I didn’t want to pray for someone else’s child to die so my son could live. Dr. Berquist answered "Some child will die anyway. You are only wishing and praying that his or her parents will have the strength and courage to donate those organs to help someone else’s child." I don’t know if he ever knew how those words gave me the courage I so desperately needed.

After five months of waiting, we got word there was a liver for Chris. As luck would have it, Mark was on a business trip in Hawaii when the call came. Chris and I flew to UCLA on a helicopter and arrived within 30 minutes.

Unexpectedly, Chris had a fever upon arrival. The team discussed waiting until the next day to do the transplant. If they could load him up with antibiotics overnight and control the fever, they would go for it the next morning. But a few hours later, the nurse coordinator came to tell me that the donor family would not hold over. The liver would go elsewhere. Although I certainly understood the feelings of the donor family, I was devastated. And then there was Mark, worrying on a plane somewhere over the Pacific, not knowing the transplant had been called off. . .

Christopher

Chris’ health began to deteriorate rapidly. He was in the ICU and needed blood products daily. He was making no platelets on his own. He was at the top of the list and we knew there was very little time left.

During one of his daily visits, our transplant surgeon, Dr. Busuttil, casually asked "You have arranged for at least 35 pints of blood to be donated in Chris’ name for the surgery, haven’t you?" We were stunned. No one had told us! It was December and blood supplies often run short during the holidays. The last thing we wanted was for a liver to become available without enough blood available for the transplant! We called relatives, friends and neighbors. Mark’s parents quickly organized a blood drive at the high school where they both worked. By Friday, over one hundred pints of blood had been donated on Chris’ behalf.

Friday night, got word there was another donor liver for Chris. We took pictures of Chris that night, and my parents brought Michael and Michelle to visit. Chris would be the 92nd liver transplant performed at UCLA.

Saturday morning, Chris was prepared for the transplant with a complete blood exchange. Mark had a bad cold and couldn’t risk giving it to Chris, so I stayed with him until it was time to go to the operating room. We followed the gurney down the elevator all the way to the doors of the operating room. Nothing can prepare you for those moments just before the door closes and a well meaning nurse says "We will take very good care of him."

Nothing can prepare you for those moments just before the door closes and a well meaning nurse says "we will take very good care of him."

We were told that the helicopter with the donor organ would soon be arriving on the hospital roof, so we went up to the fifth floor to watch it land. Out came three doctors carrying a red Igloo cooler. To this day I can’t look at a red Igloo cooler without remembering that day.

For the next 10 hours we waited. Dr. Busuttil called out every so often with word on their progress. Chris was finally out of surgery and taken to the pediatric ICU at 10:30 that evening. Dr. Busuttil stopped to talk to us briefly after the surgery. He looked exhausted as he explained that even though the liver was from a much younger child, it was still too big for tiny Christopher. In his words, he had to "shoe horn it in." In all, 28 pints of blood were used.

The next morning, the transplant team gave us bad news. Overnight, his liver numbers had climbed very high, much higher than they had ever seen for a successful transplant. Chris was put back on the waiting list and for the next few days we waited and watched. On the second day, his liver numbers were down by half. On the third day, half again. Within a week, his numbers had dropped to a point that he was removed from the active waiting list.

But now we were battling a massive infection of the incision and rejection. The first two rejection episodes were checked with conventional drug therapy. The third time, these methods didn’t work. Chris’ doctors proposed treatment with an experimental drug, called OKT3. I had watched several other children become very sick from OKT3 and I was afraid of it. Finally, after consulting with Dr. Berquist, I signed the papers and Chris was moved to the ICU to start the therapy. Chris spent the next 10 days in the ICU with every possible side effect. But, the ever important liver numbers returned to normal levels. It had worked.

Eventually, we were out of the ICU and out on the floor again. Parents who have been in this position can relate to this — When you’re out on the floor, you’re that much closer to the front door!

On Christmas eve, I left the hospital to spend some time with Michael and Michelle. We met at relatives’ home for dinner, but Michelle wasn’t feeling well, so we left early, taking with us a wonderful plate of homemade tamales. Taking our first curve, I saw something fly off the top of the car. "What was that!" I shouted. Michael quietly answered "I think it was your dinner." My first home cooked meal in weeks was now scattered across the street.

Just when things were going pretty well, there was another setback. Chris awoke one morning calling for me. Although I was right in front of him, he couldn’t see or hear me. No one could figure out what was going on. Dr. Feingold, the ICU resident, drew blood and literally ran it to the lab. He returned with news that Chris needed to be put on the respirator immediately.

For some reason, Chris’s blood gases were bad. As they were rushing him to the ICU, he began having a seizure. In the ICU, they had trouble intubating him. By then, Dr. Busuttil was there, along with everyone else you can imagine. It’s such a terrible, helpless feeling to look through a small ICU window at a team of doctors and nurses frantically working on your child. When they finally got him stabilized and on the respirator, he was taken for a CAT scan. Dr. Busuttil was so kind to keep coming out to tell us what was going on.

It turned out that Chris had suffered a stroke, about the size of a dime, in the upper left part of his brain. We were devastated. After everything that had happened, Chris had always pulled through. Why this? We waited for a week not knowing how much damage had been done. Finally, he was taken off the respirator. After many tests, there appeared to be no permanent damage.

Christopher

Eight weeks after his transplant, Chris was discharged. It was the day before my birthday. My mother took Michael and Michelle out of school early so they could be there for our grand homecoming. Even our local newspaper was there. It was a wonderful, joyous day. And what an unforgettable birthday present for me!

Over the next couple of months, Chris was in and out of the hospital, the most serious time due to septic shock, which required another emergency helicopter flight to UCLA. Chris’ three flights on the helicopter earned him the unofficial "most frequent flyer" award at UCLA.

Then in April, the "switch clicked"— that’s the only way I can think to describe it. Chris became much stronger and healthier. His hospital days were finally behind us.

We celebrate the 12th anniversary of Chris’ transplant this year, and he is every bit a normal, healthy teenager. He will be 16 in February and I sometimes joke that I would love to get him an "attitude transplant"! But, seriously, it really is wonderful to deal with just some of the normal worries for a change. He’s a freshman in high school, loves roller-blading and cycling; and he’s in his fourth year of Boy Scouts. Unless he raises his shirt to display his many scars, you would never suspect his ordeals.

We wanted to tell our story and to thank Dr. Pokorny, Dr. Ross, Dr. Shochat, Dr. Shaw, Dr. Busuttil, Dr. Berquist, Dr. McDiarmid, Dr. Vargas, the entire UCLA transplant team, and many others for saving our son’s life. But most importantly we thank our donor family. Without their precious gift, there would have been no transplant.

I remember after Chris’ Kasai procedure, we went to a picnic where there were other children who had liver disease, even one who had a transplant. It was a real morale booster to see children who had successfully beaten liver disease. When Chris was in the hospital, all we ever saw were the really sick kids. To know that there really was hope gave us strength during the difficult times. And this is one of the most important reasons we started C.L.A.S.S.

Cole

Cole

Cole entered the world in August 1999 - a bouncing baby boy with an eager brother and a loving family. Complete with a big dog in the back yard “Rudy”, his was to be a life full of comfort and happiness. But 2 1/2 months after he was born, Cole was diagnosed with a rare liver disease called biliary atresia, a condition in which the bile ducts that drain bile from the liver to the intestine are either blocked or absent completely. The cause of the disease is unknown, but it isn’t believed to be hereditary. With the blockage -- or absence -- the liver can’t perform normal. Biliary Atresia can be corrected by a common procedure known as the Kasai, which works well into adult hood for about 1/3 of the patients who undergo it. The second thirds are OK into late childhood but eventually need a transplant. Cole, however, fell into the remaining third. And after two Kasai procedures and seven months of life, he needed a liver transplant.

While they waited, the Family toted Cole around as they hoped each blood test, each live enzyme, each doctor would offer something new. But as time passed, the family knew that they must rely on a strange to provide a miracle. Someone who suffered a tragedy of their own, but was willing to help someone else.

Always, but only as a last resort, doctors mentioned using a live donor. This option seemed almost impossible, offering up part of an organ carried a lot of risks. For one, and most importantly, Blake might be left without a mother. “You just can’t choose between your children,” Cindee said. As she spoke then, little Cole gurgled and smiled. With the exceptions of his pouched out belly and jaundice, it would be difficult for anyone to know he was different. But on that day early in March of 2000, Cole was about as normal as he would be for a long time.

Just a few hours after a benefit St. Patrick’s Day dance was held on his behalf, Cole became very ill. Doctors in San Angelo said he had a bacterial infection. He was taken to Temple Texas by life flight where doctors said he needed a transplant soon. The sicker Cole grew, the more imperative the need for a transplant became. Soon, the Cole's Family knew the only thing that would save their tiny son was a live donor transplant from Mom.

The only reason they did the live donor transplant was because he was going to die. What happens when they have so many bacterial infections is that the liver just deteriorates, and lot of time when they get to that point they die. And it’s at this point that he was. It was his third bacterial infection, and you can only have so many before they won’t even do a transplant. They want a certain amount of stability and he had reached the stage where he probably was going to die if he didn’t get a transplant.

We just glimpsed at the fact our son would die, but we never thought, “OK that’s it”. We just buckled down and did what we had to do, save our son! Cindee “Mom” was a perfect match for Cole. They had the same blood type, Cindee’s size also helped. So Mom gave 1/3 of her left lobe of liver to her son. Although Cole spent several weeks in intensive care to become strong enough for the surgery, Cindee checked in the night before. When doctors and nurses entered her room the next morning, Cindee couldn’t have been more ready. She doesn’t recall much about that day except saying “Let’s do this! Let’s do this!” Cindee was, she knew, saving her son’s life.

Prior to surgery, the two were prepped lying side by side. Cindee reached through the rungs of Cole’s crib and touched his tiny hand. With any luck -- or maybe God’s grace -- they would find one another again, in the same place, healthy.

Their families had the hardest job that day. For 10 ½ hours, they sat with a telephone receiver in each hand, taking calls from two separate operating rooms, receiving updates on a couple of people they loved the most. When the transplant was complete family members got to visit Cindee in one recovery room and Cole in the other. The transplant was over but the ordeal still lay ahead. Cindee and Cole, however, shared a rare moment soon after the transplant. One of those moments when a mother knows everything will be OK.

About a day and a half after the transplant, Cindee finally found the strength to go to PICU. (Pediatric Intensive Care Unit). Very weak and not feeling well at all Cindee needed a wheelchair to get to Cole. She made it to the crib where he lye with tubes and monitors and everything you could imagine. I leaned over the poles and looked at him and he woke up, and he looked at me, and put his hand in mine and went back to sleep. I don’t know if he was saying thank you or what, but it’s just one of those mother son moments that I’ll never forget.” I knew he knew what I had done for him and it was well worth every pain I had and would endure.

There have been many moments since. Cole has had rough patches, He is now 8 years old. He has developed severe food allergies, anemia, high blood pressure, and has had three seizures. At this time Dr’s think he has portal vein hypertension, an enlarged stomach and pancreas. No diagnosis yet, just tests confirmed these findings. Dr’s are following his care and monitoring his closely. He now has a port a cath which blood work is drawn from. He takes a lot of medication and will continue for life his anti rejection med “Rapamune”.

“I’m not any kind of hero, but you hear so many stories about people who find babies in a trash can or who are thrown away. I just would say to those people “Love your children. you never know how long you’re going to have them”.

Today we are doing OK, we may not always be, but today is enough for us. Cole is alive and he is a true blessing.

Connor

Connor

By His mother, Christina

Connor was born August 2005 in Monterey, California., he was a normal healthy and happy baby. Connor was jaundice when he was born as many babies are so we didn’t think much of it. I took him to a well baby check up at his pediatrician and the doctor noticed that he was still very jaundice even at 2 months old, the doctor decided to order labs. Little did we know that we were about to begin our very difficult journey. Connor was referred to Lucille Packard Children’s hospital were we learned Connor had biliary atresia.

Connor had his Kasai on Halloween 2005; he recovered well and was sent home after just a few weeks later. We thought we were one of the lucky ones, it seemed that the Kasai worked because his bilirubin dropped and he started getting healthy. About 2 months after surgery he developed a high fever and got very sick. The doctors told us that he had gotten an infection from a stitch that was left in after surgery and that the Kasai had failed. Soon he was placed on the transplant list. I was the wrong blood type to donate and my husband was too big.

The next 10 months consisted of hospital stays due to pic and broviac line infections, ascites and varices of the esophagus which caused him to bleed. If Connor wasn’t admitted to the hospital he was constantly having surgeries called scopes to try to stop the bleeds from happening. There were so many times that I wasn’t sure if Connor was going to make it and I would prepare myself for going home without my son.

In September 2006 we finally got the “call”, Connor got his liver “get to the hospital as soon as possible”. A drive that should have taken 2 hours, took us only about 1 hour. Connor was prepped for surgery and was taken into surgery a couple hours later. I always pictured the day he got his transplant the scariest day of my life but it wasn’t, I was relaxed and calm, I knew he would be alright and this was his chance for a new start. Connor started improving as soon as he was out of surgery and was out of the hospital in less than 2 weeks.

Connor is now three years old and is doing great. He was hospitalized shortly after transplant because his bile drain had clogged but has been home since. He is the healthiest and happiest toddler I know. He is battling with EbV right now but is handling it well.

There are lots of people I would like to thank but will only mention a few. Dr Conception, Connors transplant surgeon, all I can say is WOW what a great job! Dr Berquist you are our favorite. Dr. Marsha, thank you for answering all of my questions. And all of the nurses, liver doctors and the PICU doctors and nurses. Lastly I would like to thank Connor’s, Nana Kathie, if it weren’t for you how would I have slept; I never could have done it without you.

Dana

Dana

by his mother, Joann

Dana was born in December 1998. She was diagnosed with biliary atresia, polysplenia and a malrotated bowel at 9 weeks and had surgery (Kasai procedure). Dana progressively declined in health until at 5 months she developed severe ascites. Her father, Todd, was screened as a potential donor. At 6 months of age, Dana was airlifted to UCLA with difficulty breathing from the ascites. She was admitted to the hospital and stabilized. During her stay she developed a fever due to a liver infection. After her fever dropped, she was transplanted with a portion of Todd’s liver on June 14, 1999. Dana quickly recovered and was released from UCLA after 11 days.

Dana has been very healthy after her transplant. As of this writing, July 2003, she has been hospitalized once at a local hospital with a viral fever. She is a bundle of energy and can easily keep up with her older brothers, Erik and Kyle. Dana loves life and enjoys it through her play. Some of her favorite activities include her dance class, singing, playing outside, swimming, hugging her kitty, painting and coloring.

end faq