Johnson's Story...

Johnson was born on 11th August 2013, the only son of Joseph and Proscovia, a Ugandan couple living in extreme poverty in Masaka, Uganda. Tragically, very soon after birth, it was obvious that Johnson was not a well child and it was discovered that he had been born with a congenital heart defect called Tetralogy of Fallot.

Tetralogy of Fallot involves four anatomical abnormalities of the heart and, in the so called developed world, is treated with corrective surgery, usually within the first year of life. Tetralogy of Fallot results in low oxygenation of blood. The primary symptom is low blood oxygen saturation with or without cyanosis from birth (blue baby) or developing in the first year of life. Other symptoms include difficulty in feeding, failure to gain weight, retarded growth and physical development, and shortness of breath on exertion.

Children with Tetralogy of Fallot may develop "tet spells." These are characterised by a sudden, marked increase in cyanosis followed by loss of consciousness, and may result in brain injury and death.

Johnson was referred to the Ugandan Heart Institute when only a few months old. The family travelled to Kampala regularly sitting in clinics for hours always hoping there was something that could be done for their son. His father, Joseph, works as a car mechanic and gets jobs when he can. The family live on 60p a day. By the time Johnson was 2 years old the family had used up all their life savings and eventually were told by the doctors in Kampala that there was nothing that could be done for their son in Uganda. To most people in the world, apart from his parents, Johnson was not a concern. What does one small child, hidden in the depths of the African continent matter? Why should we be concerned about this child when there are many millions more suffering around the world and maybe even on our own doorsteps? The death of baby Johnson would make no impact on the world today.

At this point Proscovia brought Johnson to the Wellspring Children’s Medical Centre in Kamutuuza. She knew that Wellspring had a reputation for saving children’s lives and this was a last minute plea for the life of her little son. At first Wellspring staff told Proscovia that there was nothing they could do, since they were aware that there were no facilities in Uganda where such complicated open heart surgery could be performed. The child would eventually die of his congenital heart defects.

Medcare decided to fight for this child. Medcare finance the running and development of the Wellspring Children’s Medical Centre in Uganda and believe that no task is too great or price too high to save the life of a child. The foundation of the work of Medcare is the love of God for all people and in particular the children. Jesus tells us that children are God’s Kingdoms Pride and Joy and every life is precious; every life is special; every life matters; every life has a plan and a purpose in God’s Kingdom. And God is a God of miracles even today. So a solution was sought for Johnson - that solution had to be A MIRACLE.

However, Johnson was becoming weaker every day and at risk of imminent death. Johnson was also developing more and more tet spells particularly when he was stressed and when he saw a doctor or a nurse. He had very delayed milestones, was still being breast fed, did not speak, although understood his name and instructions, and did not crawl or walk.

In September 2015 a small team came out from Medcare to Uganda who decided to visit Johnson in his home to understand a little more about his background. When they arrived at his house it was obvious that Johnson was dying. He was in the middle of a severe tet spell, was cyanosed, extremely short of breath and very distressed. His father at first would not give permission to admit his little child to hospital to save his life. He had used all his savings and the situation was now hopeless. Immediately Medcare explained to the parents that they would take over the financial management of Johnson’s care and persuaded them to allow the team to take  him to hospital as an urgency and there he gradually recovered.

Within 2 weeks Medcare was put in touch with an American charity named Morning Star Foundation, who work together with local grassroots organisations throughout Uganda to identify needy children with congenital and acquired heart disease who will die without treatment. Many children in Uganda with heart disease must travel overseas to receive heart surgery and Morning Star’s goal is to provide the best medical care possible to each child, regardless of the cost. This seemed like a God given opportunity for Johnson, but Morning Star had run out of funds. Johnson’s condition was so precarious that it was felt that any surgery should be undertaken as an urgency. Medcare committed to fund for his surgery whatever the cost and set up an appeal in the UK and USA to assist with this. It was estimated that £10,000 would be needed to save this child’s life.

At this time many people doubted the wisdom of spending so much money on one small child. £10,000 could assist and maybe even save many young lives in Uganda. Why put all these resources into the life of one little boy? But God had already told Medcare that he was the God of the individual and every life counts, however small and apparently insignificant. The death of Jesus has enabled our healing and salvation – and this child’s life was a part of his eternal plan.

And so Johnson’s miraculous journey continued:

On October 28th Medcare was informed that the Naryana Hospital in Bangalore had accepted Johnson onto their cardiac surgery programme, having been referred by Morning Star. On investigation it was found that this hospital specialises in all streams of cardiac surgery and is world renowned in dealing with complex heart problems. Children from over 76 countries suffering from congenital heart problems have sought successful treatments. Over 16 heart operations on children are performed every day and the hospital has the largest experience in the world in surgery for Tetralogy of Fallot. In addition, Naryana Hospital has one of the largest paediatric ICU units in the world, with 80 beds. God could not have picked a better hospital to send Johnson to.

Passports were applied for and necessary vaccinations given in readiness for a journey to India. But in Africa all these things take time and time was not on Johnson’s side. By November, Johnson was still waiting for a ‘Fit to Fly’ certificate and a date for his flight to Bangalore. It was hoped he would fly by 11th December. On 29th November he was take to Kitovu Hospital in Masaka for a routine blood tests required for his “Fit to Fly’ certificate. On the way to hospital he became distressed and on reaching hospital was admitted and put on oxygen. Blood was taken for routine tests and results showed that he was suffering from an infection (site of infection unknown) and he was put on antibiotics. By December 5th Johnson was a little better and there were plans to discharge him from hospital the following day. But that evening Johnson’s health seriously deteriorated. He started fitting and lost consciousness. He was rushed by ambulance to Kampala Heart Institute, where he was admitted onto ICU in a critical condition.

At that time it was thought that the fits were due to severe oxygen lack to his brain and by Monday 7th December the doctors said that Johnson’s life was in God’s hands. He remained unconscious until 9th December. At that time the doctors prayed around Johnson’s bed. There was nothing more they could do but wait on God’s will for this suffering child. On the morning of December 10th the CT scan results came through. He was suffering from meningitis, which explained his neurological status. More antibiotics and anticonvulsants were administered and he remained on ICU until December 15th. Sadly, all the other children admitted to ICU at the same time as Johnson, died. He was the only one to survive.

Prayer was requested for this little boy from believers worldwide. He was prayed for in Uganda also and often prayers were made for him on the ward. These words were spoken over Johnson one morning “Johnson, continue fighting. You can make it. You are not fighting alone. We are all fighting with you.” Gradually Johnson began to recover.

However, on December 24th he was again reported to be very weak following yet another tet attack and a further convulsion. His platelet count was found to be very low and a platelet transfusion was administered. By Dec 31st he was again stable. On Monday 18th January Johnson’s consultants in Ugandan Heart Institute compiled a report which was sent to Bangalore for a new request for referral to the Naryana Hospital paediatric heart unit. On Monday 25th January Johnson was officially accepted by the Naryana Hospital for open heart surgery.

On Wednesday 3rd February Johnson, his mother, William, from the Wellspring Children’s Medical Centre, and a paediatric ICU nurse provided by Morning Star, flew to Bangalore via Dubai. Oxygen was given to Johnson on the flight but he remained calm throughout the whole journey and suffered no tet attack. In the morning of Thursday 4th February Johnson was admitted onto the children’s ward for observation and tests.

All remained well until Saturday 6th February when Johnson developed another tet attack and was rushed to ICU and put again on oxygen. By Sunday he was stable again and surgeons decided to operate as soon as possible. His mother was warned that he had a 50/50 chance of survival but she agreed for surgery to take place.

At 6.40am Tuesday 9th February Johnson was taken down to theatre. After a successful 6 hour operation he was back on ICU, on a ventilator and unconscious. The operation was technically a success.

Doctors in Naryana were surprised at the speed of Johnson’s recovery. One day post operative he regained consciousness and was taken off the ventilator. By the following day drainage tubes were removed and he was put back onto the main ward. He began breast feeding again. 3 days post operatively, he was off oxygen, sitting up, playing and feeding well. Miracles un-numbered!

On Friday 19th February Johnson was discharged from hospital but remained in India for a further 2 weeks until he flew home to be reunited with his father and the rest of his family in Uganda.

What a journey. And yet it has only just begun. He needs to fully recover from his surgery, catch up on his delayed milestones and then start leading the life of a normal toddler – laughing, playing and enjoying life. God promises that he will ‘restore to us the years that the locust has eaten’. He will restore to Johnson and his family the years of despair and sorrow and suffering and will transform the future years into ones of hope and joy. This little boy is destined for great things in God. Let us continue to pray for him as he now has the opportunity to grow and develop and live a life to the glory of God.

Thank you for all your prayers and support for this lovely little boy.