Hello! My name is Karen and I’m Amanda’s mom. I thought it best if I started telling her story from the very beginning. On January 1st, 1998 our family welcomed the very first newborn baby born in Cleveland. She sort-of became a local celebrity since all the news stations and radio stations were in and out of our hospital room. My husband, Mike, and our older daughter, Jessica, were very overwhelmed with all the attention Amanda was bringing. We still watch the recorded news stories on VHS from time-to-time.
Amanda was born with an umbilical hernia and we were told just to monitor it. If it ever seemed larger, we needed contact the doctor immediately. No big deal – we weren’t worried about it at all. We did notice that she was very jaundiced, but again we were told not to worry. Afterall, it was January and putting her in front of a window for daylight wasn’t a great idea (brrr!).
Towards the end of February, I noticed that her umbilical hernia had indeed grown larger – about the size of a peach pit. I called her pediatrician who asked that we bring her up for a quick look. After her exam, her pediatrician thought it best to do some lab work since her jaundice wasn’t clearing up. I received a call the next day to come up after hours to have a consult with her doctor.
Of course, I was very nervous and asked my mom to join me. That was when I received some pretty devastating news. Amanda’s liver enzymes were extremely high, and her doctor thought it could be one of three possible diseases. She referred me to a gastroenterologist at the Cleveland Clinic.
We were able to get an appointment in just a few days. After more tests, we were given the dreaded diagnosis. Amanda had a rare disorder called Biliary Atresia. She needed to have emergency surgery – called the Kasai procedure – ASAP. This surgery is generally successful for children under two months and Amanda was just days away from reaching that milestone.
On February 28, 1998, Amanda had the hospital priest come into her hospital room to do a baptism, then she underwent surgery. Carrying my baby to that operating room and handing her over was the hardest thing I have ever had to do. Waiting six hours for any news was the second hardest thing I ever had to do.
FINALLY, the surgeon came out to let us know how she did. We were told that most times they can say the surgery was a success or that she would need an immediate transplant. Well, her news was that she was in the “gray” area. He was unable to let us know if this surgery was successful because of how damaged her liver was.
For over 21 years she battled liver infections (cholangitis) on and off. She spent her 1st birthday, Easter, New Year’s, and many more milestones in the hospital. We constantly had to pull family in to help stay with her in the hospital, watch our oldest daughter, take turns between work and staying with her, etc. We did have several years of normalcy, but always were on high alert with any cold, flu and fever. Luckily, she had a grandfather who became her nighttime companion most nights while hospitalized.
Right before her 21st birthday she became ill again. This time, her liver enzymes did not want to go back to normal. She was pretty jaundiced for nine months and generally felt crummy all the time. I knew the chances of her receiving a liver transplant from a deceased donor would be difficult. There are just way too many people that need them, and most will not get one. I then made the decision to get tested to become her living liver donor.
On September 23, 2019, Amanda received 40% of my liver. Almost immediately she started to improve. Now, three weeks later, her liver enzymes are normal. For the first time EVER.
She will remain on many medications to fight rejection. She still has Biliary Atresia and her new liver can still get affected by infections. It is not unusual for these patients to have multiple transplants in a lifetime. But we will fight. We will fight as a family because FAMILY DOESN’T FIGHT ALONE.
With love,
Karen