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Family Stories

One in 10,000 people:
My Daughter was Diagnosed with Biliary Atresia
Her Dream is to become a Midwife

The Nagasawa Family Story
Interview: May 2018

When she was two month old, our second of four daughters was diagnosed with biliary atresia, which occurs in 1 in 10,000 births. After her diagnosis, she had surgery on her stomach and intestines.

The disease requires liver transplantation sooner or later, so we planned to have it done while she is in elementary school. Up until fifth grade, she regularly went to the Children’s Medical Center in Kanagawa for check-ups.

To have liver transplantation before starting junior high school, we visited Dr. Mureo Kasahara, the pioneer of child liver transplantation, at the National Center for Child Health and Development in Setagaya, Tokyo. Our daughter was examined in February, 2017, and received part of her mother’s liver on April 24, 2017.

The surgery started at 8:30am and finished at 6pm. It was 8pm when I could finally see the face of our daughter and my wife. I was waiting all alone in the waiting room and was worried that something might happen not only to my daughter but also to my wife. I will never forget this feeling.

They recuperated well afterwards. My wife went home on May 6, and our daughter did on May 26.

We booked the Ronald McDonald House when we decided to have surgery at the center in Setagaya and when the surgery date was fixed.

After giving more than half of her liver to our daughter, my wife was weak and couldn't visit her at the center from our home in Yokohama. It was hard for her even to go back and forth between the center and house. She got out of breath just by walking to a nearby supermarket or pharmacy but there were rice and food donated to the house which we could cook and eat. We were very happy to see our daughter every day and spend time with her little sisters in the house.

She is now in the first grade of a junior high school. Although she used to run out of breath while playing basketball, she has recuperated enough to think about joining a basketball team at school. My wife, who donated more than half of her liver, is also recuperating with 90% of her liver regenerated.

She said that she wants to be a midwife in the future while she was at the center, and the staff said to her, "come to work with us first!"

I hope that she will give back what she received from eveyone.

Their surgery was broadcast on a NHK television program "Professional" in July 2017, and we have received great feedback.

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