Widening holes in their tender hearts

The triplets with Onyinyechukwu in the middle.

It all began a year after Praise-God was born. The only part of his body that was growing was his head.

Also, unlike other kids of his age,  who could play around their neighbourhood in Ijoko area of Ogun State for hours, PraiseGod tired out after few minutes, and always found it difficult to breathe properly for days.According to his father, Olafisoye,  after playing for some minutes, Praise-God would hold his chest as his breathing would be irregular. Even his peers in the area used to call him Baba-welder, because Praise-God spent more time on his knees than his feet.

“His school teacher also complained that he could not sit up for long in the class,” Olafisoye says, “I told my wife that he could not stay on his feet for long. She assured me that it was not unusual and suggested that we should decrease his physical activities. I agreed.”

They never thought it could be a problem with his heart. But when his lips turned blue-black, and the colour of his eyes became unusually yellowish, it became clear to the Olafisoyes that their son’s health needed a major intervention.But they did not go to the hospital immediately. Eventually, Praise-God, then a pupil of Divine Favour Primary School, Ijoko, had to stop schooling as he could no longer cope with his school work since he was always in and out of the hospital.

Welcome the herbalist

Olafisoye, his father, a carpenter in Ijoko, thought his enemies were at work by manipulating his child’s health.He says, ‘I confided in a friend, and he took me to a herbalist in Ijebu-Ode. The babalawo told us that it was my detractors’ efforts to destroy my family. He gave me some substance to give Praise-God to swallow every day and reassured me that his health would return to normal state in a month.”

But six months after, Praise-God  still fainted occasionally, while he still had breathing problems. His parents did not relent in their ‘efforts’. They kept visiting traditional doctors and other faith-based organisations that were recommended for them in Lagos and Ogun states. That was until their pastor’s wife advised them to seek orthodox help.

Hole in the heart

Olafisoye took his son to the Lagos State University Teaching Hospital, Ikeja, where, after examining the boy, doctors told him what the problem was: Praise-God has a hole in his heart.He said, “They told us he was born with the hole in the heart and we must correct the error immediately,  through surgery.”Olafisoye and the embattled mother would like the operation to be done immediately. But the surgery would not come cheap. It would cost N2.5m and it would be done in faraway India.This was no good news to Olafisoye whose carpentry business has packed up.

“Where do I get N2.5m? My furniture business has crumbled. I only manage on what I earn from operating commercial motorcycle at night. I can’t even concentrate again. The only thing I think about is how this child will survive. I’m down to my last. In fact, we eat anything we can find in the house.

“If not for their kind proprietress, my other two children would be out of school by now, because we owe fees. My church members and some close family friends also give money for his treatment. Otherwise, he would have been dead by now,” he laments.

His wife, Nnena, told our correspondent that her son’s condition had almost torn the family apart.She says, “All our investments have gone down the drain, We have put our home up for sale, which many family members condemned,  saying,  after all, we have other children. But what parent would give up on a child because he his sick? I cannot do that. That is why we have continued to do our best while calling on everybody to help us save this child.”

Like Praise-God, like Sumaya

Sumaya’s story is as disturbing as Praise-Gods’.She was also diagnosed with a hole in her heart when she was just 16 months old.Her mother, Sherifat,  says she observed that her daughter’s neck was limp, and she could not sit up for more than 15 minutes. Sumaya was also breathing irregularly, especially at night.Sherifat says, “I observed that her neck was not erect like that of my other kids when they were young. Her tummy was bigger than the whole body, as if she had kwashiorkor. Not only that, she was breathing too fast – like she wanted to give up. Then it would subside after few hours. I could see the anguish in her eyes after she had this abnormal breathing throughout the night.

“She was not crawling and she was also not growing like she should. I took her to the hospital to see the doctor.”

Her medical report by her consultant at the Isolo General Hospital states that Sumaya  has a congenital heart disease (hole in the heart) and would also need  N2m for a surgery  in India.

Her father, Ismail Hassan, who also spoke with our correspondent in company with his wife and  their daughter, says it ias impossible for the family to raise the amount, considering their predicament.

“My wife and I sold recharge cards on wholesale, and we were doing well. But unfortunately, a week before Sumaya was diagnosed with this disease, precisely January 14th of this year, thieves came to our shop and made away with cash worth N1.5m and other properties in the shop.

“A week after this robbery, we got her diagnosis and the fact that we would need N2m for surgery. We are dejected because we cannot afford this treatment right now. We are even indebted to many people already due to the robbery.” The father of the ailing infant narrates.

For Omolola, another pathetic tale

Also, Omolola  Megbesin  was born with two birth defects. She has a hole in her heart and she also has the Downs Syndrome.Her mother’s experience is similar to the other women’s. Jumoke, says, “I noticed she was not breathing regularly. It could be fast and it could be very slow at times. Sometimes, she just stops breathing; she then jerks back to life.

“After we had gone to several hospitals, a doctor eventually referred us to LUTH,  where they told us she has a hole in the heart, which sometimes blocks air, blood or other essential substances from entering the heart.”Jumoke, a secretary with a private firm in Surulere, Lagos, says doctors have told her that for her daughter to lead a normal life, they must raise N3.5mn for a surgery abroad, because  LUTH does not have the facilities to do the surgery.She explains why her daughter is yet to have the surgery three years after her diagnosis.

“I am separated from Lola’s father. He was never interested in his daughter’s welfare once he found out she had Down syndrome. I have remarried, so technically I’m the only one who has been taking care of her in the past four years. It is impossible to raise the funds for this heart surgery right now on my own. My sister, I need help.”At this point, Jumoke’s voice became jerky and she fought back tears.

‘My wife is always crying’

Mr. and Mrs Jude and Chika Umennadi are not a happy couple right now. One of the set of their seven-month old triplets, Onyinyechukwu, was born with a hole in her heart.Umennadi,  who spoke with our correspondent at the paediatric unit of the Lagos University Teaching Hospital, Idi-Araba,  on Tuesday, says  Onyinyechukwu was born a few minutes apart from her other siblings,  Miss. Onyedikachukwu and  Master Onyebuchi,  at the Nigerian Navy Reference Hospital, Navy Town, Ojo  in July, last year.However, five months after, Onyinyechukwu started having boils all over her body and her parents took her to the hospital for check-up.

Umennadi says, “When she started developing boils, we took her and her brother and sister to the hospital where they were born for treatment. As the paediatrician was examining her, she said that something was wrong with her. Then she took a closer look at her and told us that that her breathing was abnormal – that it was too fast.”

They were referred to LUTH for further consultation with specialists.  The report of the medical examination at LUTH, signed by consultant paediatrician and cardiologist, Dr. Chinyere Uzodimma, and Consultant Cardiologist, Dr. Lassie G. T.,  corroborates the findings at the Navy Hospital.

Onyinyechukwu has ‘large mal-aligned VSD, right ventricular hypertrophy, right ventricular outflow obstruction, showing tetralogy of fallout.’ In a layman’s language, their baby has a hole in the heart and would need N2.5m to travel to India for an open heart surgery.This is a solution that the couple, who hail from Ezinifite in Aguata Local Government Area of Anambra State, cannot afford.  Umennadi,  who trades in spare parts in Ijegun area of Lagos, says the money he makes from the business is grossly inadequate to take care of the triplets and their other siblings.

“Apart from the triplets, I have four older children, who are in school. In fact, I was in a dilemma when my wife got pregnant again for the fifth time. When she gave birth to the triplets, it was like jumping from the frying pan into fire especially when the doctor said we should look for money for surgery.

“The baby’s poor health has affected our ability to take care of the triplets. My wife is always crying.”He also calls on the government and well meaning individuals to assist them on the child’s case, and even to assist parents with multiple births.

A spreading disease

Experts say the population of Nigerian children born with congenital heart diseases, popularly known as hole in the heart, is higher than ever before. The Department of Paediatrics, Aminu Kano Teaching Hospital, Kano State, for instance, recently published in the Nigerian Journal of Medicine that 86 out of the 108 children between the ages of two weeks to18 years, which they studied over a two-year period at the department, had abnormal echocardiogram.The findings states, “Fifty-five of the subjects had congenital heart   disease (62.5 per cent), while 33 (37.5 per cent) subjects had acquired heart disease.”

The researchers concluded that there is an urgent need for government to establish a well-equipped cardio-thoracic surgical centre to cater for children with congenital heart disease, either for free or at subsidised rates.Corroborating this view, the Kanu Heart Foundation, which has helped over 425 children  from  less-privileged homes who have heart diseases obtain treatment and surgeries,  has raised a fresh alarm that more Nigerian children are being diagnosed with holes in the heart.

The National Coordinator of the foundation, Mr. Onyebuchi Abia, says more than 64 children,  apart from adults,  besiege the foundation daily, seeking funds for heart surgery.He says, “During one of our screening programmes in a local government in Enugu in 2009, we discovered that 17 children below five years in that locality had congenital heart problems. It was shocking. Why this? This calls for research in Nigeria; but how do you do research without facilities?”

“At least, two children with heart diseases are brought to this foundation every day. The greatest problem we have is that it is becoming rampant, parents come with their two-month old or one-year-old baby, crying that we should help; but we cannot accept all because we don’t have that much funds.”

A cardiologist, Dr. Benedict Anisuba, defined  heart disease as a general term for a wide variety of diseases that affect the heart, he says congenital heart disease refers to a problem with heart structure and function, due to abnormal heart development before birth.He notes, “This is the commonest and highest type of birth defect and it is responsible for some infant deaths in the first year of life.”He, however, states that if diagnosed early, it could be successfully treated before the affected child develops permanent heart damage and complications, such as heart failure and cardiac arrest,  which could lead to death.

Lack of cardiac treatment facilities

Government-owned hospitals in Nigeria lack cardiac surgery facilities. This is a reason why 80 per cent of heart surgeries performed on Nigerians are done in India, Sudan, Israel and Europe.

Many stakeholders believe that government has done little towards providing well-equipped, functional cardiac treatment and facilities in its hospitals.  According to them, it would cost Nigeria just about N5bn to have a state-of-art cardiac centre in Nigeria.

With the amount, they say,  Nigeria can have a cardiothoracic surgical centre, with facilities that include a Cardio O.T’s ($400,000), a functional CATH lab ($300,000) a diagnostic centre ($1m) and other structural facilities.Abia says if the facilities are available, open heart surgeries could go for just N200,000 for adults, while children under the age of 12 could get it for free.According to him, most of the funds spent on treatment abroad for these children go to the cost of air travel for at least two people, hospital accommodation, food and other logistics .He says these costs would be eliminated if patients are treated in the country.

Abia adds, “ If there are cardiac centres in Nigeria, patients can come from home, while doctors can manage the crises better. All that they will pay for is just the surgery,  which is just between $1000-$1500.Let us help parents save these children.”He, warns that if the relevant authorities fail to put the facilities in place as soon as possible, more children and adults —  from both rich and poor families — with cardiac diseases may die prematurely.

Causes

Anisuba adds that there  is no known cause for hole in the heart, but  self medication during the early stages of pregnancy can cause deformities in children, which may affect the heart.He says, “We know that it is the first three months of a babies’ life that is most important, but many mothers do not know, so they do not take the needed precautions.“During pregnancy, we advise mothers not to use certain drugs. When they go ahead and use drugs without proper consultation, it goes through  the mother to the baby, causing some developmental deformities in  organs like the heart.

The cardiologist notes that other factors that could cause this birth defect  include the use of unorthodox drugs that have not been analysed, illness and infections during pregnancy.To detect it at birth, he advises doctors or midwives to test babies for abnormal heartbeats, saying, “usually, when a baby is delivered, a nurse should use a stethoscope to check the heart of a baby so we can know if there is abnormal heart beat.”He, however, adds that most babies diagnosed with hole in the heart cannot be treated in Nigeria due to lack of facilities.

He says, “We are not serious about health in this country. We pick those born in teaching hospitals right away, even when we pick, how many can be corrected. Open heart surgery is not routinely done in Nigeria, which is a shame, because we have the resources to mount more than 1,000 cardiac centres, but we do not have one. Most parents cannot afford to pay. We hope we will wake up and do what is right for these children.”