Diagnosed with hole in his heart, 13 years old Ebube is still spreading joy

FOR Mrs Elaibe Otiono, a heart defect should not be the end of the road for millions children down with the problem. Mrs Otiono, founder of Ebube Little Heart Foundation, named after her teenage son with a cardiovascular disease had been through a lot taking care of her son and often takes a message of hope to victims of the disease every year during the World Heart Day celebration.

Beaming with smiles as she carried banners with several other members of the foundation, one could hardly believe that her son, Ebube Oyintari Otiono has a heart defect and has been carrying on with a pace maker since infancy.

During this year’s celebration with the theme, “Heart Heroes and Make Your Heart a Promise,” Ebube who was tapped to be the heart hero was the cynosure of eyes as he walked along with other participants. Not even the rain could hold him back as his mother told her story.

With a congenital hole in the heart and three degree heart block, there is no shadow of doubt that Ebube has been through too much too soon. While his mates frolic about, he maintains a splendid isolation as a result of a pace maker inserted in his chest to accelerate his heart beat after a successful surgery to mend the hole in his heart in far away, New Delhi, India.

When he arrived on August 10, 2006, there was no inclination that all was not well. The last in a family of three boys, just two months after Ebube’s birth his mother became worried as he was breathing laboriously and always sweating profusely, so she decided to check out a doctor.

She recalled that they tried to manage the situation, thinking it was just a minor ailment but were soon hit with the reality of the situation when little Ebube started convulsing and had to be taken to the same clinic where he was delivered.

The distressed mother explained that at the hospital, series of medical examinations were done after which he was put on admission and treated for broken pneumonia.

She was later told to do an echo cardiogram, adding sadly that there was no cardiologist to do it and so had to be referred to the University of Benin (UBTH) Teaching Hospital  in Benin, Edo State to do the ECG. With Fabian, her Ogwashi Uku, Delta State born husband away on offshore duty where he worked with an oil company, she was all alone.

“We did the ECG and it detected the heart condition. After then, I travelled to Yenagoa, Bayelsa State for Christmas as my husband had gone to the rigs where he worked and I was alone with the kids,” she said.

On getting to Yenagoa, both mother and child couldn›t sleep and had to be rushed to the Federal Medical Centre when the illness started again.

It was in the Bayelsa State capital that she met a pediatrician who listened to the heart beat and determined that there was a murmur. Sadness set into her hitherto happy life.

“I broke down and wept but the doctor counseled me that I have to put myself together. That if he was in my shoes he will be happy that it was diagnosed early. That early intervention saves a lot and that I should move as soon as possible,” she narrated

She quickly did to the University of Nsukka Teaching Hospital (UNTH) for another round of check as the consultant advised. In search of redemption, she spent the Yuletide in the lonely hospital ward at Enugu where he was on admission for sometime before the consultant opened up. The family needed to cough out a whopping N1.5 million for a surgery in India.

Mrs Otiono wailed: “He told us to bring N1.5 million for a surgery but after consulting with two of his colleagues, they said that with the equipment available, they will not be able to do it successfully. They advised that if we are able to raise the money, it will take us to India for the operation and back.”

With a firm resolution that Ebube must live, the family started looking for the money. It was not easy but for the collective efforts of friends, family and colleagues who kept contributing until they were able to raise the money and finally jetted out of Nigeria in September 2007 almost after one year search for the money.

“He left in a very bad state as the heart was enlarged. We had to spend more time in India, about two months because they needed to reduce the heart to a reasonable size, get rid of the chest infection. At a time, he was even in the intensive care unit. They had to clear the chest of any infection before they could do the surgery. We incurred more debt,” she lamented.

The Otionos heaved a sigh of relief when the hole was finally closed but their spirits sank when they were told that their baby still needed to undergo another operation.

His heart beat hovered at a meagre 40 and 45 while healthy kids of his age recorded between 120 and 130. To correct that defect, an electric device, a pace maker was inserted in his left chest to help accelerate the heart beat.

“After the first surgery, they brought him out for another surgery and inserted a pace maker as he had a hole in the heart and a three degree heart block. So, he presently lives with a pace maker,» Mrs. Otiono said adding that with her two other teenage sons, catering for Ebube has been a huge challenge to the family as he has to go to India twice a year for routine medical check-up.

Big questions naturally come up. How long will Ebube live with the pace maker?  Is he going to remove it when he gets to a certain age? Is he going to carry the pace maker for a life time?

“I don’t know if they are going to remove it,” she said, adding: That is why we go for frequent check ups. The pace maker has a battery life span. It lasts for a particular number of years after which it expires and has to be charged. The battery of the pace maker he is currently using was changed in 2015. It is supposed to last for ten years, so it still has six more years. Last year, we went to India for a follow-up. Everything is going on well.”

Thirteen years on, she said that a teenage Ebube is doing just fine as there have been no emergency and is not in any form of medication.

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She enthused: “He goes around normally just like any other kid. Unless you are told that there is an implant in there, you won›t know. We have searched severally. The particular machine he is using has different programmes. He is using menithronic. We have checked menithronic website. It showed us that there is a machine in Nigeria at the Lagos University Teaching Hospital (LUTH) but have not been able to access it.

“We have tried but each time, they say it is not available. I don›t know if the machine is still functional. That›s the one that we know is available, otherwise, we have to go back to India,» she said disclosing that all over the world, people walked or ran a marathon to raise funds for victims and create awareness.

“The whole essence was to raise funds for heroes for continued treatment and research and assist those in the waiting list for surgery. Here in Nigeria, we have not gone far. Our work is to create awareness and sensitive people for early detection and also to let people how to live a healthy lifestyle,” she said.

Apart from a chance meeting with former Delta State Governor Emmanuel Uduaghan who gave out some money, during one of his frequent visits to India, the teenager is yet to receive any other help from any government.

Promises made by Uduaghan in his twilight are yet to be fulfilled by incumbent Governor Ifeanyi Okowa.

Mrs Otiono, a civil servant however passionately appealed to governments and well-meaning Nigerians to help innocents with heart diseases.