2018 LIVEr Champion
Roberto and Andrea Villasenor are parents to three beautiful children: a son, Andres, and two daughters, Melissa and Isabella. Andres was three when his first little sister, Melissa, was born on April 3, 2011. Two days after Melissa was born, the hospital staff and her parents noticed she was jaundiced. Andres had also been jaundiced at birth but this quickly resolved after a little extra exposure to sunlight. When in the hospital, the doctors tried using a UV light to improve her color but it didn’t seem to work. Once home, Melissa’s jaundice worsened. Her pediatrician, unable to determine the cause, referred the family to a gastroenterologist. They did a number of tests; her parents remember being confused and scared. Andrea is originally from Guatemala and Roberto is from Mexico and, since English is not their first language, they weren’t sure if their confusion was because of the language barrier. However, even with a translator, they still felt lost. Learning about the liver was like learning a whole new language.
Unable to locate the problem, the doctors decided to do an exploratory surgery. During the surgery, they diagnosed Melissa with Biliary Atresia (or BA). BA is a disease which affects only infants and prevents the flow of bile from the liver, causing a toxic back-up. This is a rare disease, affecting about 1 out of every 12,000 infants in the United States. In an effort to correct Melissa’s bile flow, the doctors performed a Kasai Procedure when she was two months old. A Kasai Procedure attempts to correct the affected bile ducts ; a third of children who undergo this procedure will never experience further complications, a third will require a liver transplant during adulthood, and a third will require a liver transplant during childhood.
The Kasai Procedure worked well for Melissa. She needed regular follow-up but her liver function tests were improving. The family worked on finding a new normal—making sense of the medications she was on, dealing with doctors’ visits, while still trying to let Melissa and Andres be kids.
In 2013, Melissa was hospitalized due to severe bleeding from esophageal varices. The blood that should have been flowing through her liver was greatly reduced and began to back up throughout the veins in her esophagus, resulting in esophageal varices. Essentially, the veins in the esophagus became overloaded with blood and burst, resulting in heavy internal bleeding.
It was about this time Andrea and Roberto became pregnant for a third time. The pregnancy was normal and Andrea received a lot of follow-up because of Melissa’s health issues. During the pregnancy, the baby seemed healthy and the doctors assured Andrea and Roberto that it would be very rare for this child to also have BA.
On August 4, 2014, Isabella was born; her delivery was complicated so she spent her first few days of life in the NICU. She was also very jaundiced when she was born. Andrea and Roberto felt sure that Isabella also had BA but the doctors thought it might be caused by something else due to the rarity of the disease. Like Melissa, Isabella also went through a number of tests but the doctors could find no answer; even her liver biopsy seemed normal. At two months old, Isabella underwent an exploratory surgery, was diagnosed with BA, and a Kasai procedure was performed.
Andrea and Roberto now had two chronically ill children under the age of five as well as their son. The family began, once again, to try to find a new normal. With Melissa, they didn’t know what was happening, but with Isabella they knew more. Andrea and Roberto felt more scared with Isabella because they were aware of what could happen as a result of her illness. Every little thing was overwhelming—a small injury, a slight temperature; they struggled to let their kids be kids, while balancing all their health concerns.
Melissa seemed to be in the hospital more than Isabella, so they thought Isabella was doing fairly well. However, when Isabella was five months old, three months after the Kasai, her liver function tests were still not improving. She started to get jaundiced again and began having trouble with her stomach. Isabella was admitted to Hasbro Children’s Hospital in Rhode Island but, even though her lab values were bad, Andrea and Roberto were told that she was not sick enough to need a transplant; they would need to wait.
At 10 months old, Isabella developed ascites. Ascites is the buildup of excess fluid in the space surrounding the organs in the abdomen. In extreme cases, the abdomen swells drastically, almost appearing like a pregnant belly. Andrea and Roberto struggled seeing Isabella so uncomfortable; they could neither alleviate the pain nor explain to her why she didn’t feel well. As parents unable to help their child, it was emotionally and mentally painful to see her in such pain.
Isabella was not eating well due to the ascites so the family returned to the hospital. The family was then transferred from Hasbro Children’s Hospital by ambulance to Boston Children’s Hospital. Finally, it was decided she would be put on the transplant list.
The doctors explained that, in addition to the transplant list, there was another option—that of live liver donation. The liver is capable of dramatic regeneration; if a donor could be identified a small portion of their liver could be removed and given to Isabella. Roberto began going through the testing process to see if he could be Isabella’s donor. The whole process was an emotional roller-coaster; Roberto and Andrea wanted to do everything they could to help their youngest daughter.
Soon after being put on the list, they received a call that there was a liver available. They went to the hospital and waited through the night but were told the organ was not suitable for transplant. So, again, they waited. About two months after Isabella had been listed, they received a second call. They brought Isabella to the hospital and continued to wait while doctors operated on her. Roberto and Andrea recall how scared they felt, and how hard it was to see her connected to all those machines that seemed to beep endlessly.
On July 3, 2015, just shy of her first birthday, Isabella received her gift of life. When the doctors finally let her parents see her, they couldn’t believe how she looked! At first, they thought she looked very pale, but the doctors assured them this was her healthy skin color—they had just never seen her without being jaundiced.
After Isabella was transplanted, life returned to normal for a while. One year later, as the family prepared to celebrate Isabella’s birthday, she suddenly became very ill: she was throwing up, not eating well, and her blood pressure was very high. Her doctors did an ultrasound and diagnosed a bowel obstruction; Isabella had to go back to Boston for another major surgery. She was mad about being back in the hospital but bounced back quickly after the surgery.
While Isabella was being transplanted, Melissa stayed relatively stable. However, last year she had another severe bleeding episode from esophageal varices. Shortly after it was resolved, she had another. Even though the doctors banded her varices to stop the bleeding, she was not improving. Her doctors in Rhode Island sent her to Boston for follow-up; she too was placed on the transplant list. Since then, her numbers continue to go up and down, her jaundice comes and goes. Roberto and Andrea aren’t sure if she will stay on the transplant list but at least they know she is getting amazing care.
Andrea and Roberto’s son, Andres, is very good with his sisters. Admittedly, it can be difficult to balance all three children, especially since they spend so much time and energy caring for the girls. Every day, the girls receive their medicine in the morning and at night. Recently, Andres was on antibiotics and was excited to be involved in this daily routine. There have been times when both the girls are ill, Roberto will stay with one and Andrea will stay with the other; when this happens, Andres goes to stay with his grandparents. The Villasenor family feels blessed to have the support system they do filled with aunts, uncles, and grandparents. They would be lost without this added support. Roberto and Andrea try to make time for doing something special with just Andres. They are thankful that he is patient with the girls but struggle to help him understand why they are sick and he is not; it is difficult to explain to someone so young that he should not feel left out because he is healthy.
Champions fight and as you can see from their story, Roberto, Andrea, Andres, Melissa, and Isabella, are all champions. They are Liver Life Champions.