Malcolm’s story

Malcolm Children’s Foundation was set up in memory of Malcolm Mutebi, who tragically died just a few months after he was born, due to a heart condition. If he was born in the West, he almost certainly would have survived. But Uganda lacked the medical expertise and infrastructure to save his life. This is his story.

My name is Susan Nambejja, and I am Malcolm’s mother.

Ever since I was young I’ve loved children. Before Malcolm was born I worked and volunteered with a charity based in Kampala, Uganda helping children and teenagers.

I would act as a substitute parent for teenagers who were orphans. When they got sick I would take them to hospital and sleep besides them. I would imagine being without a parent myself, and really felt the pain these orphans were going through. It was so touching when children saw me at the orphanage and would call me ‘Mummy Susan.’ I also trained teenagers to be entrepreneurs so they could support themselves as adults, and offered psychosocial counselling to young mothers. This work didn’t pay much, so I did some art and crafts to earn a side income.

Me and my partner Keneth planned to have a baby of our own, and at 29 years old, I became a parent. I gave birth to baby Malcolm Adrian Mutebi on 8 October 2016. I’ll always remember the claps, hugs, kisses and smiles after giving birth to Malcolm, and all the surprise visits from friends and relatives. It was the happiest moment of my life.

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Malcolm soon after birth

But the happiness did not last.

Due to the poor medical system in Uganda, the doctors discharged me from hospital without noticing that my lovely son had a heart defect. His constant cries day and night brought me back to hospital every week for two months. Still the doctors simply said “your baby is OK, feel comfortable you are a first time mother.”

When I took 10-week-old Malcolm for his immunisations, the doctors noticed his low weight and finally released something was wrong.

Malcolm was diagnosed with a rare heart condition known as Truncus Arteriosus disease type 1. This is where a baby is born with one vessel coming out of their heart, instead of two. It leads to breathlessness, difficulty in feeding and ‘failure to thrive’. The doctors told us that without heart surgery, Malcolm would die.

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Susan with Malcolm in hospital

The heart surgery Malcolm needed wasn’t available in Uganda, his only hope was in the USA, UK or India. The operation would cost $40,000, so it was impossible for us to raise this money ourselves (the average wage in Uganda is 30 cents per hour). We were told by the doctors we needed to find the money before Malcom reached three months old, as the operation is less successful to older the child gets.

We struggled, going door to door, and using the media, desperately trying to raise the money. Finally, through the help of social media and international friends, we found a charity willing to pay for Malcolm’s operation in India, and we used money we’d raised from generous strangers across the world to fly him there.

I couldn’t believe it – Malcolm’s life had been saved.

On 3 February 2017 Malcom, Malcolm’s father and me took the long trip to India. After two flights, we were taken to Frontier Lifeline Hospital in Chennai, south India.

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Malcolm arrives in India for his operation

After a number of tests and assessments, Malcom was cleared for surgery, which he had on 7 February.

Tragically, the operation came too late and was just too much for his tiny heart to cope with. Malcolm died at 7am on 10 February 2017.

It’s impossible to explain the pain of losing a child: it was the worst moment of my life.

Two months after losing Malcolm I began to think about the many other children who die in Uganda’s hospitals due to lack of treatment, especially those who have heart complications like my first born had.

I decided, through my pain, to start Malcolm Children’s Foundation.

Today I visit hospitals and offer counselling to mothers whose babies have life-threatening conditions. I help them to find potential donors who can provide the treatment their children desperately need, and assist them with practical matters such as completing forms.

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Susan helps children like Malcolm in hospital

Little did I know at the time that the death of my only child would result into something that would benefit other children. I hope Malcolm Children’s Foundation will grow to help many more children in Uganda to have a long, happy lives.

Everything I do is in memory of my beautiful boy.

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Malcolm Adrian Mutebi, 8 October 2016 – 10 February 2017

A message from Malcolm’s father, Keneth Mutebi:

It brings sadness when your child is born with congenital disease. In developing countries like Uganda, general health care is nobody’s business, and having a congenital disease is like a death sentence.

Day by day you have to watch your child’s life diminishing slowly. Doctors inform you that your child may not exceed a certain date, if nothing is done to change the odds. Treatment and equipment are too expensive and too hard to get in poor countries like mine. As a result, hope is lost except that someone might come to your rescue.

A few lucky children are promised by doctors that they try to search for external support from different donors all over the world. Most are not lucky enough to be considered for funding, and are left to die, which is very sad. Even for those born lucky enough to receive funding, the help sometimes comes too late to benefit them.

But we hope this trend can change. We give assistance to children born with such complications. This involves funding simple medication, or equipment like oxygen tubes, to keep children healthy enough for further treatment in Uganda or where necessary, overseas. Please consider supporting my son’s foundation, and help us to save little innocent lives.

Keneth with his baby boy Malcolm, son after birth