Parents of 1-year-old hopeful, despite waiting on critical liver transplant
Carissa Thomas, from Bonteheuwel, in the Western Cape, has four teeth, she can utter the words ‘Mama’ and ‘bye-bye’, and like many other one-year-olds, she adores fluffy teddy bears. She has a special liking in dogs and loves bathing-time. The always smiling and laughing Carissa is an outgoing and very active girl who knows exactly how to wrap her parents, Rushan Thomas (25) and Cayle Thomas (24), around her finger.
Carissa and her parents Rushan Thomas and Cayle Thomas in Bonteheuwel
But for young Carissa, there are days she doesn’t eat and struggles to sleep. Although she loves playing with dogs she must be careful of possibly harmful bacteria that can make her sick. Her love for water isn’t a choice, but rather a yearning because water helps soothes her irritated skin.
Baby Carissa is born with a complex liver disease called biliary atresia.
Biliary atresia is a condition in infants in which the bile ducts—tubes inside and outside the liver—are scarred and blocked. In infants with biliary atresia, bile can’t flow into the intestine, so bile builds up in the liver and damages it. The damage leads to scarring, loss of liver tissue and function, and cirrhosis. Biliary atresia is life-threatening, but with treatment, most infants with biliary atresia survive to adulthood.
Her mother explains: “She was three weeks old when she stopped breathing. They thought it was sleep apnea. We were sent to the Red Cross Children's Hospital where we did various tests. They discovered that she had biliary atresia. She had her first operation at four weeks”.
“Months after the operation young Carissa’s condition did not improve, she was still experiencing the same symptoms as before the operation. They told us the operation was unsuccessful” - Cayle Thomas
After a few visits to the Wits University Donald Gordon Medical Centre in Johannesburg, they were told in July that young Carissa won’t make it to the end of COVID-19. The reason because she is showing signs of liver failure, and the only curative measure is; a liver transplant.
“When we got the news I was devastated. My heart sunk in. I thought let me just do anything to help her and put all my attention on her.” - Rushan Thomas
After receiving the news that Carissa has only six months left to live, both her parents quit their jobs. Since then, they spend all their time trying to find a donor, creating awareness about Carissa’s condition, and raising funds in order to cover hospital expenses.
However, the situation is complex and the process of getting a liver transplant is time-consuming.
Before a donor is approved he or she must meet various requirements and undergo numerous tests. When a donor is successfully identified, a list of protocols must be followed.
“If the donor is not a blood relative, then we have to wait up to three months because we have to wait for the Department of Health. A possible donor must fit all the requirements and his or her liver must be a match, otherwise, it won’t work” explains Cayle.
The Department of Health is aware of Carissa’s critical condition and her limited time frame, but due to the life-threatening nature of the operation, all protocols need to be followed.
Should Carissa find a donor, she will have to relocate to Johannesburg for a minimum of two months where her parents and herself will need to be accommodated.
Furthermore, if the operation is successful, Carissa will still need special treatment and a safe environment to grow up in. According to the Paediatric Gastroenterology, Hepatology, and Nutrition Unit of the Red Cross Children’s Hospital, she will require adequate living conditions to prevent recurrent infections and other complications. For this reason, the Thomas’s have also registered for housing on the City of Cape Town’s housing database. They are currently on the waiting list.
Rushan and Cayle refuse to live without hope.
“We believe in God, without faith we wouldn’t have been strong enough, we encourage each other to be strong. We are walking in faith and believe that everything will work out.” – Rushan Thomas
A special bank account has been opened for Carissa, and although the funds are still limited the account received donations from friends, family, and the church they attend in Wynberg, Bethel Assembly of God.
Cayle adds: “A lady from another church donated finance for possible donors to be tested when they cannot cover the costs themselves.”
Although Carissa is not limited in what she can do, her mother explains that because of a Vitamin D deficiency her bones are very brittle. This causes Carissa to be cautious when walking, but it does not limit her, says her mother and laughs.
“You won’t say she has an illness. She is just up and down, living her normal life basically.”- Cayle Thomas
It’s the father that adds lovingly: “Mental wise she is clever and very stubborn. She would want her way”.
Fortunately, a 19-year-old girl, who wants to stay anonymous, fits the donor-requirements perfectly. They are only waiting on confirmation whether her liver is a match. Then the three-month process can start and Carissa might have a second chance in life.
If you want to reach out to the Thomas family and give them a word of encouragement, you can reach them with this number: 081 405 9858