MY SON WILL NOT DIE Bella Omino’s struggle to find cure for son

When my colleague and I were ushered into Bella Omino’s office by her secretary, the first thing I noticed was the ‘sister-to-sister’ rather than ‘boss-secretary’ relationship between them. As soon as the secretary left, Ms. Omino softly asked us to make ourselves comfortable as she continued perusing some papers on her desk.

She busied herself with the paperwork as my colleague and I waited for her to signal we could start the interview. This gave me time to not just observe her closely and get a feel of the amount of paperwork she must deal with daily, but also get acquainted with her spacious and beautifully furnished office. I was attracted to three photographs strategically placed on her table that no matter where she looked while working, she would see them. They were of a cute-looking young boy and I could not help smiling with adoration.

Then Ms. Omino looked up and caught me staring at the pictures and uttered her first direct words to me: “If you don’t believe in miracles, I have a living one right there!” And with those words she sat back in her reclining chair and settled herself for the interview. With every word she spoke there was an unmistakable English accent of one who has lived in the US or England. I was not wrong because she studied in universities in both countries for her three degrees in Law, Bachelor of Science in Politics and Economics, and a Masters in Politics of International Resources and Development.

Despite her academic achievements and senior position in her organisation, Ms. Omino comes out as a humble and down-to-earth professional and single parent of two-and-a-half-year-old Hawi Omino – the miracle baby. As she starts recounting the story of Hawi, she rewinds the clock to March 2009… This was the time Hawi, at five months, was admitted in one of the leading hospitals in Nairobi. With great courage, but sometimes showing signs of painful memories and other times a smile of triumph, Ms. Omino walks me through the bumpy road she has traversed with her son:

“My son’s condition baffled doctors and one told me in the face that no amount of surgery would add value to his young life. Another said patients with the kind of symptoms my son had just died because there was nothing doctors could do for them. And the third told me there was no point of my son continuing to be admitted in hospital and it was best I took him home – I assumed to die.

A lot of babies are born with jaundice but my son developed it when he was three months old. Towards the end of March 2009, he developed a fever and was attended to by a doctor in a hospital in Nairobi. The fever persisted and I took him back to the same doctor on the second day. The doctor injected him with some drugs then did some tests to determine the cause of the fever and the possibility of a link with the jaundice.

We went back home to wait for the laboratory results to come out but strangely, he would not stop bleeding from the area where blood for the tests had been drawn. I was scared and took him back to hospital the same night. Doctors managed to stop the bleeding and also recommended admission. We were hospitalised for more than a week, which turned out to be one of the most traumatic moments of my life. Numerous medical tests were carried out without any concrete diagnosis. What upset me most was that my son’s condition was getting worse and yet this was a teaching and referral hospital with many doctors coming in and out without diagnosing the problem.

I was distraught with hopes of saving my son’s life fading with every sunset. One doctor explained that my son had a condition that was blocking bile from flowing and was the cause of the prolonged jaundice. That did not ease my pain since there was no explanation on what they were planning to do to rectify the problem. Another doctor told me my son had chronic liver disease, and with that finality begun the nightmare that turned my life upside down. In the end, doctors decided that surgery might be necessary and I was told to wait for the surgeons to see the child and make their decision. You can imagine my anxiety while waiting for the decision of the surgeons while my son’s condition was deteriorating by the day.

The first surgeon came in on the sixth day. He asked me to tell him my son’s story. I expected him to have checked reports on various tests my son had undergone, but apparently he hadn’t. I went ahead and told him the whole story, as I knew it. Half way through the conversation he received a telephone call and walked out to answer it. He didn’t come back and only returned three days later. Even then, only to ask me who would pay my son’s bills since health insurances do not provide cover for conditions a child is born with, commonly known as congenital diseases. I was very angry at his insensitivity to my son’s condition.

The second surgeon said operating on my son was not a big deal but the risk of him dying in the process was very high. And the third one dropped the bombshell – no amount of surgery could add value to my son’s life. I almost passed out. The doctors were heartless in the way they talked to me. After a week of anxious waiting and hoping for a solution, now the doctors were telling me there was no hope for my son in a very uncaring manner.

Amidst this confusion and panic, I recalled the first paediatrician I had seen had suggested I consider taking my son to India for diagnosis and treatment. He had mentioned that doctors in India were very advanced in treatment of liver diseases. If my son could get help in India, there was nothing to stop me from trying. I went straight into my laptop and started seeking information as well as hospitals that specialised in liver diseases. All the doctors I contacted in India were reassuring and sensitive to my situation. One specific doctor kept in touch with me on a daily basis, answering all my questions and reassuring me that based on the diagnosis I had, my son’s problem was treatable.

Despite my son not being in a condition to go home, the surgeon who had asked how my son’s bill would be paid literally kicked me out of hospital saying our remaining in hospital was not adding any value to my son. He recommended regular visits to his clinic to appraise his condition. When he gave me the first appointment and I told him it was a public holiday, he pushed the appointment ahead by one week, saying he needed time to interpret all the scans and medical test results on my son. Could he not see my son was dying, or did he not care? At that point I decided my son was not going to be this doctor’s problem any more. The decision to go to India was already made by the time I left hospital.

India, here we come!

We left for India towards the end of April of 2009. Immediately on our arrival in New Delhi, the doctor I had booked the appointment with ordered further tests on my son and by evening of the same day the results were out, analysed and surgery scheduled for the following morning. This was efficiency I was not used to. I couldn’t believe what I was trying to get done in Nairobi for weeks, was possible in a day. The hospital staff took their time to prepare me psychologically for my son’s operation and also familiarised me with the hospital facilities and the environment. The doctor asked me if I was okay with surgery taking place so soon upon arrival or I wanted more time to get psychologically ready, but I told him I was okay with their decision.

Intricate surgery…

During the intricate surgery, my son was found to be in the critical stage 3-4 of liver cirrhosis, and the only option was a liver transplant. I was referred to one of the best liver surgeons in Delhi. He was appalled by the casualness of doctors in Nairobi considering my son was grappling with a very serious condition, and the delay in diagnosis had caused deterioration to the critical stage.

‘This is something we can fix. We fix it all the time,’ he assured. He explained that my son had a condition called Biliary Atresia where his bile ducts failed to develop properly while still in the womb. All this time his liver was taking a beating because it was not producing any bile. He explained that the liver is one of the organs that carry out the most functions in the body. This explained the many complications my son had. He told me this was a very rare disease that affected more girls than boys, which meant that my son was among the rare statistics they had seen. Why did it have to be my son? I mourned.

After a session with this doctor, I learnt there were many other liver diseases these doctors treated and had confidence that my son’s surgery was in the right hands. Opting to seek medical attention in India was the best decision I ever made. I felt reassured that my son would survive the surgery. It was a great relief though I still cried and feared for the worst.

The doctor introduced me to another expert in the hospital – a strict professional and completely on top of her game medically. After reviewing the case, she prescribed some medication and asked me to go back home, put everything in order and take my son back to the hospital for the transplant at the end of June 2009. Surgery and recuperation would take about four months, she explained. The medication notwithstanding, my son’s condition deteriorated by the day and he would excrete a clear yellow fluid. I literally held my heart in my arms and could not wait to get back to India for the transplant.

The life-saving surgeon’s knife

We returned to India as requested but the surgery was postponed several times because my son was beset with one infection after another. I was right in a good hospital yet my son’s condition was defying the best doctors who could save his life. Crying seemed to be the only thing I did. I worried that I was about to lose my son. The empathetic doctor assured me that a hospital is a hotbed for infection but that she needed to fix the liver because it was not doing its work. They had to keep draining the fluid that was in his stomach. They would drain up to two litres of fluid and immediately more fluid would refill the stomach.

After three weeks of screening, I was confirmed as a compatible liver donor for my son. In a five-hour operation on July 21, 2009, 60 grams of my liver was removed and in readiness to be transplanted onto my son after removing his diseased one. It took 12 hours to remove my son’s diseased liver and transplant the new one in a most intricate operation. The doctor explained that the liver regenerates itself and he expected everything would be fine with my son and I.

Near-fatal complication

After this gruelling surgery, the doctors discovered the following morning there was a clot in my son’s new liver. The part of the liver they had taken from me had two arteries while only one was needed. It is this extra artery that was causing the clot and had to be removed in an equally lengthy and delicate operation. It was very traumatising but through God’s grace he went through the operation successfully.

My happiness was short-lived because a week after the operation, there was another complication. Part of the intestines had ruptured and faecal matter was draining into his abdomen. He underwent surgery to clean the abdomen to avoid infection. He remained sedated for another three days. It was a week of sheer distress, to a point of giving up. I was not let into the Intensive Care Unit where my son was confined and watched helplessly from a glass partition, as he lay indisposed.

As if that was not horrendous enough, after tests, doctors diagnosed a heart problem. They had put a line during surgery and through this line he had picked up vegetation, a fungal growth along the line that had extended to the heart. He was put on special medication for another one month and the problem cleared. The doctors were amazing. The paediatrician used to update me all the time on what they had done or needed to do. Then of course when we were going through all the surgeries, I would tearfully call her complaining that my son was not looking any better. She would calm me down and tell me all I needed to do was to pray and leave the rest to her. That was a reassuring message to me at that distressing time.

I recall going down on my knees during his third surgery and imploring God that I was leaving everything to Him, but the only thing I was not going to do was to take home a dead body! After the prayer, I felt stronger, hopeful and relaxed. Thankfully my son’s condition started improving. I was allowed into my son’s room in the ICU. It still took a few days before I was allowed to touch him with sterilised gloves. For the two weeks he was in the ICU, he never ate anything and was fed through tubes. The sight of my indisposed little boy devastated my heart.

However, after the last surgery things seemed to pick up. He was moved from ICU to the normal ward for another three weeks because they had to make sure his body did not reject the new organ. We were discharged and stayed on in a hotel for another six weeks for observation and follow-up clinics at the hospital. He was put on immuno-suppressant drugs for life to help the body not to reject the foreign organ. The improvement was very gradual and we left India after a total of four months. We still attend clinic once a year. I am in touch with the doctors I deal with all the time and give them an update every month.

Lessons learnt…

I know there are many families with liver patients and don’t know what to do. I have gathered a lot of information on the condition and learnt a lot through this experience. There is help and hope. Liver cirrhosis does not mean an immediate death sentence. My son is now in play school and is up and about like other children.

The cost of such treatment in India is by no means cheap but it is still cheaper than in Europe, the US and other areas with the expertise. My moment of truth was last year when I met a local doctor who out of the blues asked me why I sought medical attention for my son in India. I told him my son was diagnosed with Biliary Atresia. He told me I was wise, ‘In Kenya, those ones just die!”

You can contact Ms. Omino on email: [email protected]

More about biliary atresia… 

Biliary atresia is a serious but rare disease of the liver that affects newborn infants. The common bile duct between the liver and the small intestine is blocked or absent. If undetected, the condition leads to liver failure. It occurs in about one in 10,000 children and is more common in girls than in boys. The cause of biliary atresia is not known, and the only effective treatment is surgery or liver transplantation.

Liver damage from biliary atresia is caused by injury and loss (atresia) of the bile ducts that are responsible for draining bile from the liver. Bile is made by the liver and passes through the bile ducts and into the intestines where it helps digest food, fats, and cholesterol. The loss of bile ducts causes bile to remain in the liver. When bile builds up it can damage the liver, causing scarring and loss of liver tissue. Eventually the liver will not be able to work properly and cirrhosis will occur. Once the liver fails, a liver transplant becomes necessary. Biliary atresia can lead to liver failure. It is important that a child with this condition gets a liver transplant within the first one to two years of life.

What are the symptoms?

Initially, the symptoms are indistinguishable from the common neonatal problems. Symptoms are usually evident between one and six weeks after birth. Besides jaundice, other symptoms include clay coloured stools, dark urine, swollen abdominal region and large hardened liver (which may or may not be observable by the naked eye).

The first sign of biliary atresia is jaundice, which causes a yellow colour to the skin and to the whites of the eyes. Jaundice is caused by the liver not removing bilirubin, a yellow pigment, from the blood. Ordinarily, bilirubin is taken up by the liver and released into the bile. However, blockage of the bile ducts causes bilirubin and other elements of bile to build up in the blood.

Biliary atresia is not an inherited disease nor does it run in families. It is most likely caused by an event occurring during pregnancy or around the time of birth. Possibilities for the “triggering” event may include one or a combination of the following factors:

* infection with a virus or bacterium

* a problem with the immune system

* an abnormal bile component

* an error in development of the liver and bile ducts

 Published in June 2011