On March 8 last year, Mitchelle Kadzo Katama was born prematurely via C-section and put in a nursery for five days.
Doctors told her mother Zawadi Daniel Ziroh, 31, that her bundle of joy was born with a rare condition known as biliary atresia, which John Hopkins Medicine describes as a blockage in the tubes (ducts) that carry bile from the liver to the gallbladder.
The congenital condition occurs when the bile ducts inside or outside the liver do not develop normally, though it is not known why that happens.
“In babies with biliary atresia, bile flow from the liver to the gallbladder is blocked. This can lead to liver damage and cirrhosis of the liver, which is deadly if not treated,” experts say.
In an exclusive interview with the Nation, the first-time mother revealed that on Sunday, doctors told her Mitchelle has only 60 days to get a liver transplant or she will not survive.
“My baby was born at Ruaraka Uhai Neema Hospital but on April 3 last year, she developed a persistent fever, vomiting, cough and difficulty in breathing,” Ms Ziroh said.
The girl was returned to the hospital three days later and admitted until April 12.
Doctors said Mitchelle had bronchiolitis, a common lower respiratory tract infection that affects babies and young children under two years old.
They also said they had noticed what they called a systolic murmur, which happens during heart muscle contraction.
Signs of jaundice
There are two types of murmur: ejection, when blood flows through a narrowed vessel or irregular valve; and regurgitant, a backward blood flow into one of the chambers of the heart.
They advised the mother to see a cardiologist.
At the beginning of May 2021, Mitchelle started showing signs of jaundice. The white of her eyes changed to yellow and her skin became pale.
A doctor at Neema Hospital asked to run some tests, including measuring the amount of bilirubin in one’s blood. It’s used to help determine the cause of health conditions like jaundice, anaemia, and liver disease.
The results showed bilirubin levels were very high.
An abdominal pelvic ultrasound scan also showed that Mitchelle had biliary atresia.
Ms Ziroh took the findings to a paediatric surgeon.
“I couldn’t hold my tears that night as I had so many questions that I still don’t have the answers to,” she said.
“Why my child? Why us? I mean, she is so little, she hasn’t wronged anyone, and here she is with a very serious disease to deal with.”
A surgeon at Kijabe Mission Hospital recommended an operation known as Kasai, where problematic bile ducts outside the liver are removed to allow for drainage.
Successful surgery
The small intestine is then attached to the liver and this provides a path to allow bile to drain from the liver.
Ms Ziroh was told that the corrective surgery does not always work and if it is successful, patients will need a liver transplant when they reach their twenties.
Mitchelle’s surgery was declared successful by her doctors, but Ms Ziroh’s joy was short-lived as the girl’s condition returned, though she was discharged.
When the child returned to the hospital a month later, the surgeon said the operation had not succeeded and that the only remaining solution was an urgent liver transplant.
Doctors at Kijabe Hospital advised her to attend clinics until the date for Mitchelle’s liver transplant.
In November, her stomach started swelling and she had difficulties breathing.
Mitchelle was then referred to a gastrologist at Aga Khan University Hospital. A series of tests confirmed that Mitchelle’s liver was failing.
The family had no health insurance and could not afford the required treatment. But hospital management decided to treat Mitchelle anyway.
She was admitted from November 8-20, and Ms Ziroh said the hospital catered for everything.
On December 15, Mitchelle developed oesophageal varices, enlarged veins in the gullet that result from obstructed blood flow through the portal vein, which carries blood from the intestine, pancreas and spleen to the liver.
Treatment and medication
She was referred to Kenyatta National Hospital (KNH), where treatment would be cheaper. But the gastrologist at KNH came to the same conclusion as Aga Khan Hospital.
They said that with varices, Mitchelle risked internal bleeding and if that were to happen, not much could be done to help her and she would have only 60 days to live.
The procedure is called binding and it is to curb the varices and prevent bleeding but the hospital does not have a tube that is needed in the process.
Mitchelle’s father works at a water company and lives with the family.
“So far, we have used almost Sh500,000 for treatment and medication, including the Kasai procedure while NHIF paid Sh130,000 for Mitchelle’s treatment at Kijabe Mission Hospital,” Ms Ziro said.
“This has been such a painful and devastating journey.”
Motherhood, she said, had given her “a true sense of worth and purpose and has made me shift priorities”.
“The doctors tell me the treatment and liver transplant cannot be done in Kenya because there is no hospital that has the capacity to do it.
“The best option we have to save Mitchelle is to go to India and the hospital we have identified told us the procedure will cost Sh5,000,000.” BY DAILY NATION