Baby cancer victims’ parents lament: Our lives are filled with anguish

Baby cancer victims’ parents lament: Our lives are filled with anguish

BY ADEMOLA OLONILUA

baby cancer

There was a sharp contrast between the brightly lit room where the three parents gathered and the looks on the faces of its occupants. The room was painted in radiant sky-blue but the faces of the parents and child that occupied the room bore a gloom and sad look.

Even though it was a sunny Monday, one that held prospects of a beautiful week, it didn’t seem to reflect on the downcast faces of its occupants.

One of the people in the room was a child living with cancer while others were parents who lost their children to the ailment and still haven’t come to terms with the pains. As if they had rehearsed the statement, in unison they said, “Once cancer enters a home, it wrecks the home and brings nothing but unhappiness.”

Forty three-year-old Justina Osheku is a robust and pretty woman. Although she glowed on the outside, she was downcast because she did not have a child for her husband of over eleven years. After years of fervent fasting and prayers and anguish, her request was granted by God and she gave birth to a baby girl who was named Esther.

A very quiet and observant girl, our correspondent learnt from her family that Esther was loved by everyone and was nicknamed Angel in school. Aside her quiet nature, she was said to be very brilliant and this made her mother, a cook in a private hospital, very happy.

The little Angel’s ambition was to become a surgeon but her aspiration was cut short after she was diagnosed and later died of cancer of the kidney.

Seven years after Esther’s birth, what Osheku assumed to be a stomach ache that her daughter often complained about, turned out to be cancer. The woman who has been married for about 19 years said she had no moment of peace as hospitals became her second home as a result of constant chemotherapy sessions.

She said, “I have seen troubles in life and for a mother to say that, you should know that I have suffered. You needed to know how I looked like before; I am now a shadow of myself.”

It was double tragedy for Osheku because shortly after her daughter’s illness began, she was sacked at work. Things took a dive for the worse.

“I was working in a hospital as a cook but when the case started, at the end of the first admission of three weeks, I went back to ask for two weeks’ leave since I had not taken my annual leave. The doctor, who was my boss, told me that I could not work with them again. He said he understood the nature of the ailment afflicting my child. He said what I would go through while taking care of my only child would be enormous. He said that I would be going to the hospital frequently and so he paid me off at the end of that month. To be fair, it was when we started the treatment that I understood what the doctor meant because I had to be going to the hospital every three weeks,” she said.

Trouble started with mere tummy ache

Trouble began after Osheku treated her daughter for stomach ache and helped rub her belly to relieve the pain after it started protruding.

Osheku said, “It all began when Esther complained that her belly was paining her. I decided to give her Paracetamol; I also helped her to rub her belly. When I removed her clothe, I discovered that her stomach was not as it was supposed to be. It was bigger than normal. I was hardly at home because of work, so when I looked at her closely, I saw that she had already emaciated. I never knew I would lose her so soon.”

Like any concerned mother would, Osheku took Esther to various hospitals including the Lagos State University Teaching Hospital, Ikeja, where it was confirmed that the little girl had cancer.

“I was shocked, I was not myself anymore, I went to the ward and I was crying. People tried to console me telling me that God would perform a miracle. I was inconsolable. Later, they took us to the Oncology Department and we started the chemotherapy session,” she said.

For a low income earner without a job, she spent all she had and eventually had to rely on a non-governmental organisation to help save her daughter’s life.

Unfortunately, Esther lost the battle to the ailment. Ever since then, she has been inconsolable. It is over a year now but she still thinks about her child daily.

She told Saturday PUNCH that the sad part is that age is no longer on her side as her chance of having another child is rather slim. Amid tears, she said she looked forward to the day her daughter would become a certified surgeon.

“It was after one of her operations that she told me that she would love to become a surgeon because they save lives and they were about to save hers. I was happy because I knew she was brilliant and I dreamed of becoming the mother of a surgeon. Now her dreams are dead with her because of cancer. During the ordeal, we had no help from the government,” she said.

Saturday PUNCH investigations revealed that a large number of Nigerians are not aware of childhood cancer, hence the disease is silently taking many young lives.

The International Society of Paediatric Oncologists defines cancer in children as an abnormal growth of cell in any part of the body.

According to a study by the association, the survival rate is low and out of every 10 children diagnosed with the ailment, less than two survive.

Although the reason for the growing incidence of childhood cancer in Nigeria as in many other African countries is not known, the Union for International Cancer Control estimates that 175,000 children are diagnosed with cancer every year and 90,000 will die of the disease.

Dream of young sprinter cut short by cancer

Elisha Olorunlagbara, a clergyman who lives in the Badagry area of Lagos State has been in similar shoes of Osheku while the above statistics may appear like mere numbers to some people to him, these are numbers that amplify his family’s agony.

Olorunlagbara has been praying to God for a miracle over the life of his last child, Dare, who is afflicted with cancer of the bone.

Prior to his ailment, the 10-year-old boy was nicknamed after a popular motorcycle, Bajaj, because he was a fast sprinter. He had received several gold medals for sprinting during his school inter-house sports competitions.

The family said Dare was so good at sprinting that they were so hopeful that the boy might someday be an Olympian.

“Few months before we discovered he had cancer, he still ran for his house and won gold. They were all hailing him, calling him Bajaj because of how fast he could run. Unfortunately as we speak, he has lost a leg to cancer,” Olorunlagbara said.

Olorunlagbara

The pastor narrated how what started as two children playing eventually turned into a family’s nightmare.

“In November 2011, the proprietor of his school called me that my son fell down. I rushed there and saw that they had used some sticks to support his leg and bound it with a head tie,” he said.

Olorunlagbara explained that when he asked his son what happened, he told him that a boy pushed him from behind and he retaliated and when he was heading back to class, the boy pushed him from behind again and fractured his right thigh.

He told Saturday PUNCH that when he discovered that his son’s leg had been fractured, he took him to an orthopaedic doctor. The doctor treated him and after two months, the boy was able to walk again but it only lasted for a short while. The boy soon started to complain of serious pain few weeks later.

Olorunlagbara said, “We went back to the man and he told me that the boy’s leg was broken again and upon a closer look, we noticed that the fractured leg was shorter than the other one. I didn’t believe it because I woke the boy up at 5:30am and he did not complain of pain the previous day. It happened suddenly.”

He explained that he never believed cancer could affect children until he was told his son had the disease. The 57- year-old cleric said he wept like a baby when he learnt that his son had cancer of the bone.

“The bone setter said we should take him to a hospital for test. We went to several hospitals and even travelled as far as Ogbomosho because of my son’s health. Eventually we ended up at the Lagos University Teaching Hospital and a comprehensive test was carried out. After hearing the news from the doctor, I was devastated and wept like a baby. It was like a very deadly arrow pierced through my heart. I was hurt that day. I did not know how to tell his mother but I had to summon the courage. So I took her to the church and broke the news to her. She has never stopped crying since that day,” the pastor said.

Eventually the boy’s leg was amputated. Doctors said he is lucky the disease did not spread to other parts of his body. Dare, who was once called Bajaj, now supports himself with crutches; his dream of becoming an Olympian has gone with his limb.

Chibuzor

Chika Chibuzor, a 29-year-old trader who lives around Ojo in Lagos, is also a parent in pains. She lost her first child to cancer over a year ago. In tears, she recounted how she shuttled between Lagos and Enugu to save her son’s life. The boy was eventually admitted to Lagos University Teaching Hospital but he died three days to his ninth birthday.

“I went through hell; it is more than hell. Chisom died three days to his ninth birthday. He was the first child out of four; he used to take care of his siblings. He was vomiting and purging at the same time at first. Then his eyes and mouth were swollen after taking some drugs. It got to a point that he couldn’t retain water in his mouth whenever he was thirsty. The suffering he went through was not something a child is meant to experience.

“Because my sister-in-law is a nurse at the Enugu State University Teaching Hospital, I was shuttling between Lagos and Enugu. Eventually I stayed in Lagos but my son still died. The last thing he said was “thank you mummy for taking care of me.”

Some children with different kinds of cancer

Young lives at the mercy of money

The International Society of Paediatric Oncologists states that most childhood cancers are curable provided there is money.

It states that about 80 per cent of children in resource-rich areas have the tendency to survive the ailment while 80 per cent of children in resource-poor settings would die.

While some African countries like Egypt, South Africa and Ghana have children’s cancer hospitals, Nigeria cannot boast of any. Parents of patients often complain that the charges are too high and the children are treated with equipment meant for adults.

In Ghana, Korle-Bu hospital has partnered St. Jude, an American hospital to treat childhood cancer. Also, in 2009, Windhoek Central Hospital in Namibia and Tygerberg Hospital in Cape Town, South Africa, established a partnership with the objectives of building up capacity in teaching and training of paediatric oncology in Namibia, offering scientific and academic support regarding the treatment of patients locally, as well as encouraging the formation of a Namibian parent support group and training of auxiliary team members in oncology.

So far, the partnership has recorded some positive results.

The same can be said of Ethiopia. The International Network for Cancer Treatment and Research, USA , in collaboration with the Division of Paediatric Haematology Oncology, Blood and Marrow Transplantation Programme, Lombardi Comprehensive Cancer Center, Georgetown University Hospital, Washington DC, entered into a partnership with the Federal Ministry of Health, Ethiopia, Addis Ababa University Medical Faculty and the Tikur Anbessa Hospital (Black Lion Hospital), Addis Ababa, to demonstrate that a significant number of paediatric cancer patients in Ethiopia can be cured when treated by physicians trained to recognise cancer early, diagnose it correctly, and treat it according to standard chemotherapy protocols and supportive care regimens specifically designed for developing countries.

But the situation is different in Nigeria. When Saturday PUNCH visited LUTH, a parent whose child was diagnosed with cancer called on the government to save their little ones. He said that the treatment is expensive and parents go through hell in their bid to get help for their children.

He said there were no provisions for care givers such as accommodation and feeding during chemotherapy sessions. During such times, parents are outside the wards and are left to sleep wherever they feel they can find solace and some resort to sleeping on bare floor. Sometimes they contract illness from mosquito bites and other factors.

“It is disgusting that a child of 11 years old is charged as an adult in LUTH for a cancer case. Government should help us and our leaders should remember that if they have died of an ailment as toddlers, they would not be in power to rule,” one of the parents whose child has been diagnosed with cancer, said.

The President of Children Living With Cancer Foundation, Dr. Nneka Nwobbi, told our correspondent that the major problem facing children living with the disease was neglect.

“Basically, Nigerian children are neglected. If a child has a problem and is rushed to the intensive care unit, most of the instruments they use for the child are those meant for adults. We have up to 80 per cent survival rate abroad but it is still very low in Nigeria because cases are reported very late.

Dr. Nwobbi

“Even Ghana is having a better result than we have here. Korle-Bu Hospital is doing very well and having a training programme with St. Jude in America. We should have that but everything is working against us in this country. There is a mindset that this country is not safe so they can’t send their people here to train us,” she said.

Nwobbi, who has been running the foundation for over a decade, said there had been no political will to help the children.

“There is no political will. A patient went to St. Jude and they said that Nigeria is rich enough to cater for her citizens. They said because they are purely charity and every child that goes there gets everything for free including the care giver. When you see the place you will think you are in a hotel. They have counsellors and I don’t know how many hospitals in Nigeria counsel parents of children with cancer. It is very traumatic.

“A child on the sick bed diagnosed with cancer told me that he knew he would die but his major worry was if he would go to heaven. Another said that she was just waiting for death to come but she could not tell her mother because she had been crying since. There was a time a child was dying daily in a ward. We need to make them know that it is not the end of the world. Why would they allow children die in pain and in vain? It is a different type of pain,” she said.

SOURCE: THE PUNCH

About the Author

CRACO is an NGO that is committed to making the Child included and visible. We ensure that matters relating to children are not swept under the carpet but brought to the attention of the world, so that necessary actions can be taken to address such matters for the best interest of the the children. We keep you regularly informed of news and stories concerning children and women around the world.

Leave a Reply