Saturday, 18 January 2014

In Search of LifeLine for Goodness

Goodness 
 He was born with a defective intestine which has sentenced him to a life of passing out wastes from the stomach instead of the normal physiological path for five years. but with corrective surgery, baby Goodness would go back to normal life and live like other children, writes Chiemelie Ezeobi

For most people, little thought is given to bowel control and movement as it’s just a natural phenomenon that takes place after digestion. However normal that is for others, the same does not apply to 5-year-old Goodness. But that was not always the case for him.
When his mother, Florence Nkemachor, noticed the signs of pregnancy in 2008, like any new mother, she battled with morning sickness and other effects associated with pregnancy and took them in her stride.


She also had to go through moments of mood swings but all these were soon overcome by the joy of childbirth in June 2009. With his first cry, baby Goodness captured his mother’s heart and with good reason too; his beautiful smile was captivating.

For his father, Kingsley Ebokpayi, the birth of his son was simply a ‘Kodak’ moment. Like all males, the birth of a son often depicts their strength and the elongation of their lineage. Ebokpayi’s cases was no different as he strutted with pride.

However, days after he was born, Goodness’s captivating smiles soon turned to unending wails. Although attempts were made to assuage his cries, it was to no avail to the bafflement of his parents.

It took the discerning eyes of his mother to notice that days after his birth he was yet to excrete like normal babies despite the amount of breast milk he gulped down, as shown by his bulging tummy.

At first, it was put down to having a severe constipation, but that perception was to change when the waste started to flow out of his mouth.

It was an alarmed mother that rushed him back to the Igando General Hospital before he was referred to the Ikeja General Hospital.
After series of tests, he was diagnosed of a defective excretory disease, which has hindered him from passing feaces through the right channel.

An operation was scheduled and the doctors brought the intestine to bypass the anus to enable him excrete. But the surgery has become one too many as he has undergone five surgeries without the doctors being able to correct the abnormality.
Goodness’s case represents several of similar cases of infants who are born with defective excretory condition known in medical terms as gastrointestinal atresia.
Gastrointestinal Atresia
Gastrointestinal atresia, which leads to defective intestine, is a birth defect that affects approximately 1 out of every 1500 births.
An infant born with gastrointestinal atresia will have a defective intestine and in either way, the pylorus, duodenum, jejunum, ileum or colon could be affected, leading to the closure of the intestine, which will lead to intestinal obstruction as being witnessed in Goodness’s case.
Symptoms associated with atresia
According to medical experts, the symptoms are sometimes noticed before the birth of a baby and could be detected through the extra amniotic fluid around the fetus in the womb.

The experts opined that this occurs because the baby’s intestines don’t absorb the typical amount of fluid and for cases where it was not detected during ultra sound, it would be noticed a day or two after birth as was the case with Goodness.

Some of the symptoms include inability to stool, swollen belly, vomiting with or without bile and anorexia, which is inability to eat, leading to feeding complications which could lead to poor growth, again which was noticed in Goodness.

Early detection often leads to treatment, which involves stabilisation with tubes going into the abdominal cavity and the intestine to expel gas ,IV fluid therapy and surgery.
A Mother’s Struggle
It was certainly not what she bargained for but Florence stressed that she has no cause for regret. She said, “It’s not been easy but I have never regretted giving birth to him.”

Even when the boy’s father deserted them at birth, she has taken up the gauntlet to be both mother and father to her young son.
Faced with the task of cleaning up his son as well as taking care of the financial responsibilities that comes with the treatment, Edokpayi was said to have bailed out and hasn’t been seen since that fateful day he disappeared.

Saddled with the responsibility of taking care of him, it was no surprise Florence had difficulties in keeping a job down because of the erratic nature of his illness.

To make ends meet though, she often engaged in petty trading but was quick to shutdown for weeks unending, whenever a trip to the hospital was scheduled, thereby loosing her customers.

At her wits end after the years of being a caregiver had taken huge toll on her, yet with no solution from the doctors in Nigeria, the mother alongside other sympathisers decided to look for an alternative abroad.

Speaking to THISDAY, she said, “I noticed this sickness from birth and I took him back to the hospital where he was born and they referred us to Ikeja.

“When we got there, they ran some tests and told us that they would operate which they did. They put a tube in his stomach and he lived with it for a whole year.

“The next year, we went back for them to remove the tube so that he can excrete the normal way. But to our pains, after a few weeks, the thing broke down and we had to take him back to the hospital for another surgery.

“We were told that the only way to save his life was to bring out his colon which they did and then we were discharged afterwards. But we were supposed to go back for another surgery.”

She continued, “On that day, we got there only to learn that the surgery had been shifted for another date. We came back on that date only to be told that my son’s file was missing and that they couldn’t operate without having an idea of what had been done so far.
“It took three years from the last surgery before a temporary file was created and he was operated upon again. Last year, they carried out another operation and they closed the colon.

“We were told that after three days he would excrete the normal way but it wasn’t so rather, we noticed that the excreter had gone to his bladder and was coming out in his urine.

“Of course, we rushed back to the hospital and they brought out the colon again. So for now, he passes out feaces through the tubes and we clean him up three to four times daily.

Perhaps to give him a semblance of a normal childhood, Florence said she had to enrol him into school whilst they wait for financial support to give him the medical attention he deserves.
A Cry for Help
After due consultations, two hospitals, Great Ormond Street Hospital, London and BLK Super Speciality Hospital, India had both reviewed the case and said they were capable of carrying out the operations successfully.

According to the information made available on his save-a-soul page on the internet, the cost of the operations and the associated expenses was pegged between $20,000 to $30,00, though the cost was said to be cheaper in India.

According to the medical report made available to THISDAY, the young child has been in great pains of recent and needs an urgent operation to enable him function well.

The online team had said that the cost was to cover for the expenses to take both mother and child outside. The appeal for help read; “Almost five years after his birth and many operations, the boy cannot still use the anus. We have decided to look for ways to raise fund to take him abroad for medical treatment and operations.

“The boy had undergone several operations at the Ikeja Hospital to correct the defect but without any success. The plan is to take him and the mother to a hospital in India for the operations.

“Unfortunately, the cost of the medical trip is somewhat expensive and hard to put together. We have been trying to run an appeal fund campaign to raise the money by also creating a web page.”

Although the rainbow is yet to show for the young boy, the mother called on Nigerians to come to her aid and ensure that he is given the opportunity to live out his dreams.

A First Bank  account. No 3053986992 with the name  Ihagbor  C. Doris has been opened for him. Also, a website,  http://www.gofundme.com/4kwpm0, to give further details of his condition, has been set up.



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