Biliary atresia Pediatric Patient Stories

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Contact the Center for Childhood Liver Disease

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Emily's story

Emily was born with a condition called biliary atresia. The bile ducts that were supposed to drain bile from her liver were closed. At two months old, she had a surgery called a “Kasai” where they took a loop of her intestine and attached it to the liver to attempt to drain bile. This procedure is only successful about a third of the time and in Emily's case it was not. Of course, I did not want to hear that, so I would just say things like, “nah, it takes time,” while inside I knew that she would eventually require a liver transplant. I just couldn't believe it. This was like the kind of thing you read about, not something that could happen to you or someone you love, right?

We were referred to Children's in March 2009. Emily was six months old at that time. She was extremely jaundiced by this point. The whites of her eyes were so yellow that they almost looked green. She was seen by Dr. Heung Bae Kim and the transplant team and Dr. Maureen Jonas and the GI team. The staff was great. The team made sure we understood everything that was going on as well as what lay ahead.

By Emily's second visit they gave us “the beeper” so they could get in touch with us anytime. She was officially on the list for a liver on April 6, 2009, and had her transplant 18 days later. Those days were so tough and I realize now that she was very lucky because there are children who wait months, even years. As awful as it may sound, we knew we were waiting for someone to die so that our baby might live. The day we got the call — aside from the worry we felt — we felt awful that on the other end of this miracle someone had just suffered such tragedy.

Other than that, the morning we received the call could not have been more perfect. We received a call from Dr. Kim at 6:18 a.m. I worked third shift at the time and had just had a night off so I was home. Daddy hadn't even gotten up for work yet. And big brother Christian was on school vacation so we were all home. Perfect timing for a beautiful day.

Emily went into surgery around two p.m. and was out around 9:30 p.m. We were finally able to see her at about midnight. The transplant went well and she went home the day after Mother's Day.

I have absolutely nothing but good things to say about Boston Children’s Hospital, from the doctors to the directions to the hospital that were sent in our initial packet. The nurses in the Intensive Care Unit were great even though we were only there for two days. The nurses on the transplant inpatient unit were just so knowledgeable and caring. Great patient care as well as a little something extra: It wasn't just a job/daily grind to them. They truly seemed to love what they do. Such simple things can really make someone's day and when your child is in the hospital, it is a very trying, stressful time.

One nurse, Crystal, told us to leave for a little while and get out. Little did I know they were planning something for us while we were out. When we came back, Crystal had made a Mother's Day card for me from Emily, with her footprints as flowers. Katie would time vitals around Emily's schedule as best as she could at night so she wouldn't constantly get woken up. All the nurses were great. Before Emily was discharged, they made sure we knew how to pour her medications, signs to look for in the event of a complication, phone numbers we needed to know, etc. 

Today, Emily continues to do well. She is walking all over now and is continuing to meet her milestones on time. I'm very happy to know that we have one of the greatest hospitals in our country right in our backyard.

- Jessica Raposo

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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