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"Help me save my daughter,” Mother’s urgent plea for Baby Briella

Ms. Pauline Karanja bonds with her 14 months old daughter Briella Wughanga who is diagnosed with biliary atresia

Photo credit: BILLY OGADA | NATION MEDIA GROUP

What you need to know:

  •  The bilirubin test is part of a comprehensive panel of liver function tests that measure different liver products in your blood. 
  • Abnormal levels could indicate liver problems.

When Pauline Karanja, 39, held her baby girl, Briella Wughanga, for the first time, it felt like a dream come true. She had waited three years to become a mother and Briella's arrival was nothing short of a miracle.

She had a smooth pregnancy except for high blood pressure, which the doctors were able to control. Briella weighed 3.6 kilos at birth, was healthy and breastfed normally. But 24 hours after her birth, her mother noticed something unusual.

"On her second day of life, we noticed that she was suffering from jaundice. We consulted a paediatrician at the Coptic Hospital, who then checked the bilirubin level and found that it was high," Ms Karanja recalls. "She was put under UV light and then discharged," she adds.

Jaundice is the yellow colour seen on the skin of many newborn babies. Bilirubin is the pigment that gives bile its yellow colour and contributes to the colour of the stool. It is produced when old red blood cells break down in the body.

These cells are processed by the liver and mixed with other waste products to form bile, which is then released into the intestines. The bilirubin test is part of a comprehensive panel of liver function tests that measure different liver products in your blood. Abnormal levels could indicate liver problems.

After four weeks, Ms Karanja noticed that Briella's eyes were still yellow after her discharge.

"We sought a second opinion and were told to expose the baby to the sun. At six weeks, we were worried because it was getting worse and the weight was going down. So we went to PCEA Kikuyu Hospital for further tests," says Mrs Karanja.

Baby Briella was diagnosed with obstructive jaundice at the health facility and referred to the AIC Kijabe Hospital for further tests, which revealed that she was suffering from biliary atresia.

"They performed a Kasai procedure on her when she was 72 days old. The procedure was successful and the bilirubin levels went down and the liver started to work well. But we still had to go to the hospital every month and the bilirubin levels went back up," says Ms Karanja.

Kasai procedure involves the removal of blocked bile ducts and gallbladder and replacing them with a segment of a child's small intestine.

Briella was then referred to the Aga Khan University Hospital to see a gastroenterologist, who accompanied her on her treatment journey. For three months, until the end of June, her health story remained unchanged.

"We then did a hepatobiliary iminodiacetic acid (HIDA) scan, which showed that her liver function and ducts were not fully formed. Then the MRI showed that she had cirrhosis of the liver because the bile ducts were not fully formed and bile was being retained in the body," says Mrs Karanja.

The HIDA scan is an imaging procedure used to diagnose problems with the liver, gallbladder and bile ducts.

Born in 2023, Briella's life has largely been split between home and hospital, leading to her urgent need for a liver transplant in India. The distraught mother has already spent over Sh2 million on hospital procedures and medication.

"If the operation, originally scheduled for July, is not done as soon as possible, the bile could leak and destroy the heart and kidney. The saddest part is that if the transplant is not done, according to the doctors, my child will not survive beyond her second or third birthday," said Mrs Karanja, who is now appealing for financial help to save her only child's life.

According to Dr Waceke Kombe, a paediatric gastroenterologist at the Aga Khan Hospital in Nairobi, who is part of the team caring for Briella, biliary atresia is a condition in which the bile duct is blocked. The term "biliary" refers to the bile duct, and "atresia" comes from the Latin word for blockage.

"If you cannot remove the bile, it starts to affect the liver. And that can lead to liver failure," she says. Dr Waceke says biliary atresia appears when babies are born, most often as yellowing of the eyes. But this doesn't necessarily mean they have biliary atresia, as many babies are born with jaundice.

"Jaundice disappears with exposure to sunlight.  For a few, it turns out to be something more serious, like biliary atresia," she notes. One way to tell the difference between normal or physiological jaundice and a condition like biliary atresia is the duration of the jaundice.

Physiological jaundice usually lasts at least two weeks, while biliary atresia can last for months. "The other thing to look at is the colour of the stool. In children who only have physiological jaundice, the stool is properly pigmented. It's yellow, deep yellow or green.

However, the stool looks pale in children with biliary atresia because the bile does not mix with the stool. It looks white or creamy," says Dr Waceke. Dr Waceke notes that biliary atresia is a rare condition, affecting 1 in 10,000 children in Kenya.

If the condition is detected within the first 100 days of life, a surgical procedure called Kasai can be performed to buy some time. However, if the condition is detected after 100 days, it is too late for surgery.

Unfortunately, Briella's surgery was not successful and she was referred to India for a liver transplant. In Kenya, there are a few centres that perform the Kasai procedure, but there are no centres that perform liver transplants.

"Liver transplantation is very expensive, costing around Sh4 million, which is beyond the reach of many patients. As a result, many patients are unable to seek treatment abroad and unfortunately, succumb to the disease before they can receive treatment," says Dr Waceke.