A woman with a heart of gold saving hearts of poor Ugandans

Monica’s son had three heart operations in one year

 

My son, Keith Ssewamala got an accident while riding a bike and injured his heart when he was eight years old but six years down the road his life has never been the same again. Keith and I spent those years in and out of hospital, he had to undergo numerous operations to survive. I thank God that we were living in a developed country with first class medical equipment and doctors.

I understand the plight of a poor parent who would like to save her child’s life but is restricted because of poverty and that is why we decided to come up with a way to support parents of children with heart problems.

 

Monique Ssewamala. Photo courtesy of KHF

"You can never know how it feels until one of your own is facing that problem. There were times when everyone except me had lost hope; my son would ask if he was going to die, but I would hold his hand and tell him that he is going to live" said Monique.

Monique at Uganda Heart Institute, Mulago hospital in Uganda. Photo by Esther Namirimu

There came a time when doctors had to tell my son the truth about everything concerning his health including the different kinds of treatment, being a parent I did not want this to happen.I cannot do it alone but for my son’s sake, I am going to do my best.

 

Apart from giving financial support, my long term goal is to improve the local medical capacity at the Uganda Heart Institute so Ugandans stop going abroad for treatment.

Keith and his mum Monique. Photo courtesy of KHF

 KHF was started last year and we have so far sponsored two heart patients to go to India for treatment. All the people we support are nominated by the Uganda Heart Institute.

Keith Ssewamala’s story
Keith Ssewamala (Monica Ssewamala’s son) is an average 12-year-old boy. He enjoys being surrounded by loved ones, friends and cousins. His hobbies include football, table tennis, rounders and surfing the Internet. What separates Keith from other boys his age is that he has had to undergo three open-heart operations in 2011 alone!

In 2008 Keith fell off his bike while playing outside with friends in his local area. His mother feels that this was a significant occurrence, which could have been the cause of Keith’s occurring heart problems.
After the fall, Keith had some bruising under his left rib; his mother also says that he complained of pains in his chest when lying down.

Keith with a friend in Kings College Hospital in London. Photo courtesy of KHF

Keith with family in Kings College Hospital in London. Photo courtesy of KHF

Months later Keith was admitted to Kings College Hospital in London. After numerous tests and no diagnosis Doctor’s at the hospital performed an Echo test.

Results of the Echo test confirmed that Keith had an aneurysm on his left aorta. Shortly after the aneurysm was found, Keith underwent open-heart surgery to remove it. The operation was successful and Keith was to continue attending the hospital for regular checkups.

Keith in hospital. Photo courtesy of KHF

 Three years later in 2011, Keith complained to his mother that he was coughing up blood. He then began to lose his eyesight, which was the cause of major concern for his parents.

Keith went on to suffer a seizure at home. An ambulance was called and he was later admitted to St Thomas Children’s Hospital where it was discovered that he had a second aneurysm. On this occasion Keith underwent keyhole surgery.

Unfortunately, this procedure caused bruising which led to a third aneurysm occurring. The third aneurysm was operated and removed early that year.

Keith’s experience has moved all those who have had the privilege of supporting him through his ordeal. His parents, friends and family have begun Keith Heart Foundation with the view to support children with heart conditions in England and Uganda to begin with.

Keith with his Mum and Auntie in hospital after an operation. Photo courtesy of KHF

The organisation raises money for heart research and for those who can’t afford heart surgery in the third world. Keith is also the ambassador and he appears on the Evelina Children's Hospital posters. 

Keith in hospital after third operation. Photo Courtesy of Keith Heart Foundation

Keith says ‘I’m so blessed to have parents like mine who are so devoted to my happiness. I realise that not all children have family and relatives like mine. I’m so grateful for all their support.

Keith with Dr. Anderson, the Senior Surgeon who operated on him.  Photo Courtesy of KHF.

 Through prayers, hope and handwork of the best surgeons in the Europe; Keith recovered and he is the ambassador of Keith Heart Foundation.

Keith is the that boy in an Orange vest. Photo Courtesy of KHF

L-R: Monique, Keith, top UK cardiologist and KHF Trustee Prof. Shakeel Qureshi, the rest are Keith's relatives. Photo Courtesy of KHF

Beneficiaries of Keith Heart Foundation (KHF)

Joshua Mukalazi

Seven-year-old Joshua Mukalazi is a heart patient and very lucky to be the second beneficiary of Keith Heart Foundation (KHF).

He received sponsorship for treatment in India for the second time after Mulago Heart Institute forwarded his name to KHF for support of $16,000.

The second born in a family of six, Mukalazi was born with a heart problem and presently is a Primary One pupil of Mase Junior School.

Joshua and his parents before the second operation. Photo by Esther Namirimu

In the early months of his life, he was often sickly, and it was not until six months after he was born that his parents were crashed with the harsh reality – that their son had a heart problem.

And the negative news was delivered to them by Dr. Mugambe of Mityana hospital, after which he was immediately put on medication.

The boy’s mother says that Mukalazi had started growing very thin, had complications in breathing and his heart beat was too fast.

Children, growing normally, always have higher pulse (heartbeat) rates than adults. On average, an infant’s heart beats 120 times per minute.

But still, that can range from 80 to 160 beats per minute.

“Whenever he was satisfied with food or played with other children, he would get dizzy,” Mukalazi’s mother recalls.

And the effects could show physically, in a frightening way. The boy’s tongue would turn purple, the nerves green and signs of exhaustion would be written all over his face. He looked weary most of the time.

When he turned two years old, his parents were advised to take their child to Mulago Heart Institute and it was from here that they learnt of how severe the heart problem had gotten, despite the initial medication.

By then, the patient's father Josiah Mukalazi, a NAADS officer was earning between sh60,000 and sh100,000 per month and was spending more than sh100,000 on medical bills and transport to the health facility in Kampala.

“Dr. Lwabi of Mulago Heart Institute nominated our son’s name to be the sponsored patient by The Gift of Life organization to get a heart surgery in India,” he explains.

To the parents, the sense of relief they got from knowing that their son had a potential second chance at life was understandably incomparable to anything else at that moment.

The boy had his first heart surgery at Escorts Heart Institute and Research Center in India at the age of five.

However the problem was not completely solved, so now Mukalazi needs to go back to India for another heart surgery. With that, he will be able to live his life like his age-mates.

Luckily, he continued receiving treatment at the Heart Institute even after his operation in India.

Again, he was nominated for the second time to receive medical treatment in India.

Elisa Muwazi

Elisa Muwazi with his parents after the operation. Photo by Esther Namirimu

Two-year-old Elisa Muwazi was the first Ugandan to receive funds of $16000 to cover medical bills, travel, and accommodation and upkeep expenses from Keith Heart Foundation.
 
Baby Erisa Muwazi from Buloba, Uganda arrived at the Narayana Hrudayalaya Cardiac Hospital in Bangalore, India on Thursday 19th July 2012.


On 23rd July he had surgery for his heart condition which went well. He was discharged from hospital on 1st August 2012 and arrived safely back home just before noon on Thusday 2nd August 2012. 

"The family of Moses and Gatrude Muwazi of Buloba, Uganda through the auspices of Keith Heart Foundation wish to thank you all for your selfless contribution to their son's health." said Monique

Mulago heart Institute to get a new face

Children’s ward of Uganda Heart Institute is going to get a new face. While touring the UHI, the Founder of Keith Foundation Monica Ssewamala promised to renovate and decorate the ward to make it for relaxing for the children.

 

L-R: Monique meets with Dr.Matovu, Dr. Twalib and Dr. Lwabi. Photo by Esther Namirimu

“The ward looks so gloomy; a child cannot relax while on treatment, we need to make it more children friendly through use of bright colours,” she added.

Ssewamala said that Keith Heart Foundation has collected so many toys and she only wants permission to ship them from the UK and hand them over to the Institute.

“Our goal is to save the lives of children with heart problems and yet they come from poor families,” she noted.

She added that all the patients eligible for the sponsorship are nominated by the Uganda Heart Institute.

Ssewamala said that KHF has so far sponsored two patients; two year Elisa Muwazi was the first beneficiary and seven-year-old Joshua Mukalazi was the second beneficiary.

They both received sponsorship for treatment in India after Mulago Heart Institute forwarded their names to KHF for support of $16,000.

 “I am in contact with Professor Shakeel Qureshi one of the best cardiologists in the world and he promised to help and give Mulago the equipment we need in Uganda, all we need is shipping fee ,” she added.

 

L-R: Monique, Keith, top UK cardiologist and KHF Trustee Prof. Shakeel Qureshi, the rest are Keith's relatives. Photo Courtesy of KHF

Ssewamala promised to improve the children’s ward at the Uganda Heart Institute and ship in toys to relax the patients as they receive treatment.

Dr. Sulaimani Lubega a pediatrician at the UHI welcomed the support from Keith Heart Foundation and also thanked Hwan Sung for supporting the heart patients.

“Poverty is the biggest problem that we have, so if there is anyone who can sponsor a sick child to treatment, your support is appreciated,” he added.