MILES FOR SMILES

Diagnosis: Biliary Atresia

Age at Diagnosis: 2 months old

Current Age: 8 years old

 

Matilda's story, as told by her mother, Catherine:

 

Matilda was born with a congenital cataract in her left eye. Looking back that seems like nothing at all, but at the time it was very stressful. She had surgery in February when she was only 7 weeks old. The surgeon at Will's Eye Institute (Dr. Alex Levin, the best in the country) in Philadelphia removed the cataract successfully and we continued follow up care with him. Her left eye was discolored and we had to keep it heavily medicated with drops throughout the day as well as patch her right eye often. At the last follow up appointment, my Mom and I drove back up to Philly and I asked him why now both of her eyes were yellow. He said that he thought she looked jaundice and that we should have that checked out immediately. My Mom and I drove straight back home and the next day our pediatrician (Dr. Cami Jordan) sent us to have blood drawn. From that lab we were sent to the Pediatric Gastroenterology (GI) docs at Children's Hospital of the Kings Daughters (CHKD) in Norfolk and the doctor there (Dr. Vita Goei) said she believed it was Biliary Atresia. Neither her father, Billy, nor I knew what that meant and while she threw out words like liver biopsy, bilirubin, Kasia procedure and transplant, I felt like Alice slipping into the rabbit hole. 

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We were admitted to CHKD that night for the next 5 days, got the biopsy, and decided we wanted to have the Kasia procedure done at CHOP in Philadelphia because they did more than anyone else in the country. The Kasia procedure basically means that they try to scrape off all of the dead blood cells around her liver and then split her small intestines and link them to her liver so bile is able to drain properly, in a nut shell. They consider the procedure a success if she makes it to her first birthday without needing a liver transplant. So needless to say, it was not successful.

 

We were back and forth from CHOP to UVA's Children Hospital, both that have a pediatric transplant program back to CHKD many, many times while waiting on the call that saved her life. Talk about scary. Eventually on June 30, 2010 we got the call that we had been waiting for and Matilda got the liver that she needed to survive. But…that was not the end of our journey. After several months in the PICU at UVA's Children's Hospital where she received the liver we were released and got to go home, briefly. Once again she had highs and lows, peaks and valleys and CHKD was there to support us in every way they could. A few months after the transplant they ended up giving her a very large blood transfusion and then transported both Matilda and myself to UVA in their transport ambulance for another lifesaving procedure. To have a children's hospital like CHKD has been such a blessing for Matilda and my family. Now she is 8, going on 18 and thriving. She has her bi-annual transplant clinics at UVA for but all other concerns, including quarter labs, CHKD has our back. We are very thankful to have a hospital like that in our backyard!