Biliary Atresia

Braving Biliary Atresia

Our son Nicholas was diagnosed with biliary atresia in 1994, when he was 8 weeks old. His story begins the way it often does with this disease. He was a full term healthy baby and until the day of his 2 months check-up we had no idea there was anything wrong.

How Kendall Ciesemier's Selfless Crusade Has Made A $950,000 Impact In Africa

Born with a rare liver disease called biliary atresia, Kendall had experienced a lifetime of medical challenges. A few months after sponsoring Banite, Kendall underwent two liver transplants, and, from her hospital bed, asked her loved ones to donate to children in Africa rather than giving her gifts. Kendall's fundraising took off from there.

What Biliary Atresia cannot do

I decided to write a little list of all the things I will never let Biliary Atresia take away from me; based of another poem that was sent to me by a friend.

Adult survivors of Biliary Atresia

Tell us how old you are/where you live/what your condition is/share your experienc. Give our fellows the greatest hope and support! We come together and support each other!

BAaware

BAaware is a non-profit organization dedicated to helping rid the world of Biliary Atresia. We raise awareness, fund research, promote ogran donation, and help families battling Biliary Atresia. We will not rest until BA is no longer a threat.

Biliary Atresia Awareness & Research

BAAR does the following 3 things. 1. Raise awareness of Biliary Atresia and it's symptoms by providing information to front line health professionals to reduce the chances of an infant being diagnosed late as early diagnosis is crucial for a successful outcome. 2. To reduce the stigma of liver disease as many think it is only caused by lifestyle choices and to promote organ donation. 3. To raise funds to further awareness activities and to send money of to research centres for the furthering of research into the cause and hopeful cure of Biliary Atresia.

Biliary Atresia Study in Infants and Children (BASIC)

Little is known about the factors that cause biliary atresia nor the factors that influence disease progression. The purpose of this study is to collect the pertinent clinical information, genetic material and body fluid samples...

Biliary Atresia-Daniella Lee

The Kasai just buys time for the baby to grow and prepare for transplant. That's where we are now, Daniella is in liver failure and has been added to the transplant waiting list. Hopefully she will be having her transplant in Pittsburgh, PA at Children's hospital of Pittsburgh. We will need to stay in Pittsburgh for five to six months after transplant for her recovery. Please pray for our Daniella.

Childhood Liver Disease Research Network

The ChiLDReN Network combines the Biliary Atresia Research Consortium (BARC) and the Cholestatic Liver Disease Consortium (CLiC), as well as new studies on cystic fibrosis liver disease (CFLD). The ChiLDReN Network was developed to support the discovery of new diagnostics, etiologic, and treatment options for ChiLDReN with liver disease, and those who undergo liver transplantation.

Corrie's Story With Biliary Atresia

Corrie was diagnosed with Biliary Atresia (BA) at 8 weeks old. At 9 weeks she had her Kasai surgery where her small intestine was attached to the base of her liver and stomach to give her liver a way to drain. The only cure for BA is a liver transplant and Corrie received her gift of life on Feb, 5, 2015. Thank you for your prayers, support and encouragement as we walk this journey.

Kasai Procedure

Surgery for biliary atresia is called the Kasai procedure. During this surgery, the surgeon removes any problem bile ducts outside the liver. The small intestine is then attached to the liver. This provides a path that can allow bile to drain from the liver.

Liver Families

Think of this website as a big, comfy house. As you step inside the door you will find a diverse group of wonderful friends from all around the world. We are gathered here for one reason: Our lives have been touched by biliary atresia or other pediatric liver disease and/or liver transplant.

American Pediatric Surgical Association

The cause of biliary atresia is not known and there may be more than one cause. There is evidence that some viruses (including reovirus, human papillomavirus, rotavirus and cytomegalovirus) are associated with biliary atresia but it has not been proven if or how they cause the bile ducts to close off.

BirthDefects.org

Bile collects within the liver and other tissues where it acts as a slow poison. Without treatment, cirrhosis and eventual liver failure occur.

Children's Liver Disease Foundation

Initial treatment is an operation called the ‘Kasai Procedure’ after the Japanese surgeon who pioneered the operation. The aim of the Kasai procedure is to allow bile to drain from the liver into the gut.

LiverFoundation.org

The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.

MedlinePlus

Newborns with this condition may appear normal at birth. However, jaundice (a yellow color to the skin and mucus membranes) develops by the second or third week of life. The infant may gain weight normally for the first month. After that point, the baby will lose weight and become irritable, and will have worsening jaundice.

National Institute of Diabetes and Digestive and Kidney Diseases

The two types of biliary atresia are fetal and perinatal. Fetal biliary atresia appears while the baby is in the womb. Perinatal biliary atresia is much more common and does not become evident until 2 to 4 weeks after birth. Some infants, particularly those with the fetal form, also have birth defects in the heart, spleen, or intestines.

Patient.info

Biliary atresia presents shortly after birth, with persistent jaundice, pale stools and dark urine in term infants with normal birth weights. All term infants who remain jaundiced after 14 days (and preterm infants after 21 days) should be investigated for liver disease, initially with simple measurement of the conjugated fraction of bilirubin.