OUR JOY Our Little Fighter

Sospeter and Millicent Kaunda are full time pastors at the Deliverance Church in Kasarani. The illness of the couple’s daughter, Joy Kaunda, tested their faith to the core, at times almost doubting God’s promise that ‘He never tests us beyond our capacity’. Millicent narrates their daughter’s courageous battle for survival and God’s healing power to MWAURA MUIGANA.

“Joy Neema Kaunda was as vibrant as they come when she was born on November 8, 2000. But six months later, her good health suddenly changed. She contracted a fever one night in April 2001 and cried ceaselessly. Not even painkillers could pacify her and we rushed her in the night to a hospital near our home in Matasia, Ngong. A drastic drop in her blood level was diagnosed after various tests, and she required immediate admission but the hospital did not have facilities. We were referred to Gertrude’s Garden Children’s Hospital. By the time we arrived at Gertrude’s her condition had deteriorated so much that she required an immediate blood transfusion. Further tests revealed she had sickle cell anaemia.

Sickle cell disease is an inherited disorder where the red blood cells are abnormally shaped. This makes it difficult for those that carry oxygen to move easily through small blood vessels. This causes painful episodes, serious infections, chronic anaemia and damage to body organs because the tissues are not getting enough oxygen. A sickle cell anaemia patient may suffer chest pain, coughing, difficulty breathing and fever. The bone marrow may also temporarily slow its production of red blood cells due to infection or another cause and this could lead to a serious drop of red blood cells, resulting in severe anaemia.

Signs of sickle cell anaemia include fatigue, paleness and a rapid pulse. Other symptoms include painful swelling of the hands and feet. Though this is an incurable condition, most children born with the disorder grow up to live relatively healthy and productive lives if early diagnosis, management and treatment of symptoms are made.

After doctors explained the condition to me, I knew our daughter had a long battle ahead if she was to survive this disease. I buried myself in prayer, trusting God to do His will. Night duty nurses would join me in my midnight prayers, as I petitioned God to heal my lovely daughter. We remained in hospital for a week before her condition improved and were discharged and given a course of antibiotics to keep infection at bay. Sickle cell disease attracts many infections and our formally serene life became one of regular hospital visits, as our daughter seemed to catch anything flying by. Of course this was at great financial burden to us.

We were again admitted at Gertrude’s in October 2001 when our daughter became seriously ill with an infection. And just like the first time, a blood transfusion was needed. However, the process had to be stopped when her body seemed to reject the new blood. She was in a lot of pain and cried incessantly and all I could do was hold and comfort her. At some point she started convulsing and was rushed to the ICU. At this point I didn’t think my daughter would live.

She was diagnosed with meningitis and after treatment started her health improved and she returned to a normal ward. My daughter was courageously fighting two very complicated conditions that were mercilessly battering her small body, and all I could do was watch and pray for her recovery. After a few days her eyes turned white and the white completely obscured the pupil. An ultra sound scan established brain infection and swelling. Doctors explained she had developed a condition known as encephalitis because of the meningitis, which was causing the brain to swell. A CT scan showed there was a blockage that was stopping cerebral fluid from the brain to be drained into the kidneys naturally. There was a lot of pressure on her head and this caused the head to swell, a conditions known as hydrocephalus. It was obvious the child was in a lot of pain because she cried all the time.

Brain surgery…

Our daughter underwent brain surgery on November 1,2001 to ease the pressure on her brain. Her condition was becoming desperate every day and I was totally overwhelmed to the point of just crying and asking God to have mercy on Joy. They say calamities do not come singly. My husband remained at home looking after our son, Keith Baraka, while I concentrated on Joy. One day Keith was not feeling well and was also taken to Gertrude’s where he was diagnosed with a heart condition. We did not know what to do or whom to turn to. As it was, we decided Joy’s condition was more serious and Keith had to wait for a little while, as we could not afford treatment for both.

As if having one child in hospital fighting for her life and another at home with a life-threatening condition was not enough, my husband also got sick and was admitted in hospital with a kidney problem. At that point I loudly asked God what he wanted with my family. I reminded Him He was my only hope and could not desert me. Crying was not enough. I needed inner strength to go on and support my three patients – the dearest people in my life – and through the power of God, I survived.

Joy might never walk or talk…

Joy’s operation was successful. An artificial shunt was inserted in her head, all the way to the kidneys to help drain the cerebral fluid. Her recovery was very slow. The illness had also made her regress in her development. She could crawl before hospitalisation, but now could not sit or stand, and her head remained swollen. The doctor’s prognosis was that our daughter might never walk or talk. My husband recovered from his illness and was with me when Joy was discharged from hospital. We held hands in prayer and strongly affirmed that Joy shall live to declare God’s goodness and mercy. We lived with this faith even when it looked like there was no hope.

Our daughter needed round the clock care, as she could not do anything for herself, not even turning in bed. I learnt as much as I could about sickle cell disease and its management in order to help my daughter, as much as I could. Even though I learnt the disease had no cure, I was not ready to give up on her. In addition to reading a lot of material on the disease from books and the Internet, the bible became my greatest source of wisdom. I turned to scriptures to learn about God’s healing power. I found comfort in Jeremiah Chapter 32: 26 – There is nothing too difficult for God.

I would hold Joy’s legs and declare they would walk one day with God’s grace and mercy. I would address her squinted eyes and twisted mouth and tell them – Joy shall see with those eyes and testify God’s faithfulness with that mouth. I talked to God on a one-on-one basis and challenged Him to heal our daughter, just as He raised Lazarus from death. Anyone walking in during my private moments with God would have thought I was a crazy woman.

A pleasant surprise…

God certainly heard my prayers. Joy’s health continued to improve. She started crawling and by 2003 was walking. All we could do was praise God and keep praying because we knew her life would be one of many health challenges. In late 2003, she had a typhoid attack, which was treated but we later noticed a painful swelling on the leg. An x-ray revealed osteomyelitis (an infection of the bone). A bone specialist at Gertrude’s performed surgery to correct the condition.

A sickle cell specialist at the Aga Khan Hospital’s Doctor’s Plaza took over management of Joy’s condition. But we believe in miracles because Joy has done very well and we rarely need to take her to the clinic. After spending all our savings of over a million shillings on Joy’s treatment, we had only Ksh1000 to offer as tithe in December, 2002. We put this money in an envelope during church service and marked it ‘Joy’s healing.’ We believe our gift was pleasing to God and He is fulfilling His servants’ needs and healing Joy as we requested.

Joy is today the perfect picture of health. Apart from deafness on one ear as a result of the meningitis infection and brain surgery, she runs around, eats well and performs all tasks just like any other normal child her age. She has not had a blood transfusion in the last nine years. She is a joy and encouragement to us.

Joy is now 11 and in class six at Corner Stone Academy and although not very good academically, we can’t thank God enough for sparing her life. My husband and I composed a song – Kwa yote tumejifunza tutangemea Bwana (through it all we have learnt to trust God) – to thank God for His doing. We thank doctors for all they did for our daughter, but we also believe God always has the last word. This is why Joy is alive and well today.

Joy’s illness drained us financially and we had to start all over again. Though we had medical cover, the provider told us it did not cover congenital illnesses, so we had to foot all the bills from our pockets. We had to take loans to pay for her treatment but we are not complaining, as all was for a good course. We still have our little Joy and through God’s grace are now getting back on our feet again.”

Published in February 2012