On the 6th April, 2011, when I gave birth to a baby boy christened Isaac Adeboye Adegbemi at Our Lady of Africa Catholic Hospital, Oluyoro Oke Ofa, Ibadan, Oyo State, Nigeria; my joy knew no bounds!
I got married relatively late, my baby came when I was forty years old, but it was a safe delivery without complications – no much birth pains apart from initial inability of my baby to cry out at birth, but he did after some seconds of nurses’ professional care to make him do so.
I was very happy because I had been hinted earlier by the doctor of a tendency to be operated on because it is usual with women of my age bracket. However, my case happened to be different. I quickly made a phone call to my husband who had left earlier late in the night and he could not believe that I had put to bed. I also phoned most of my friends and well-wishers and they were all happy for me, giving thanks to God for His goodness towards me.
Isaac weighed 3.3kilograms (3.3 kg) at birth, which was considered normal; he was looking good enough.
But after forty eight hours when I was to be discharged, I noticed he was throwing up in his cot. I immediately reported my observation to the doctor on duty who had earlier written a report that we were fit for discharge.When he checked him, he directed that Isaac be tested for jaundice, the result of which tested positive, and an acute jaundice at that! As a result, Isaac was transferred to the Special Care Unit of the hospital for treatment.
After drips administration to stem it down was not effective, the senior consultant pediatrician resolved to blood exchange i.e. some quantity of blood would be drained and replaced with another healthy one, equal to the amount drained.
We the parents were ready to do anything possible to see our son alive, hale and hearty. In two weeks in the intensive care unit, he was certified okay to be discharged. I joyfully carried my bundle of joy home in company of my husband who was equally overwhelmed with joy. But after three months, my sister-in-law who was taking care of me and the baby came in to tell me that my father-in-law called her and asked her why the baby was not developing properly.
It was then I took a closer look at my son and discovered that my father-in-law was right. The euphoria of having given birth to a baby as well as ignorance of a fist-time mother made me oblivious of the retarded growth.
As a result of that, I became worried and immediately took him back to the hospital.
When I saw the doctor, he asked me the brand of baby milk I had been giving him even though; exclusive breast feeding is the ideal method of feeding a baby from birth to about three years according to the World Health Organisation (WHO).
The need to feed him at midnight when he was in the special baby care unit led to the nurses supplementing breast milk withNAN baby food, but I changed it to SMA Gold baby food when we were discharged. I took this decision because I was told by other mothers that SMA Gold was better; as a matter of fact, it’s more expensive than NAN baby food.
Even though I agreed I made a mistake, I was still very sure the problem was more than change of baby food brand. The weight at birth had not changed, and the doctor decided I should go back for two weeks and continued with the baby food to complement my insufficient breast milk.
He also told me he would find time to educate me on the risks of women giving birth late in life.
When I got home, some experienced mothers around me, out of concern examined my son’s head and told me he had an ailment called ‘oka’and ‘ntiwaisi’ in Yoruba and Igbo languages respectively.
I was directed to female herbal healers who specialised in that, but with no remarkable improvement after a few weeks’ treatment.
Hence, I decided to go back to my doctor, I could not see him because I got there late on the appointment day. Fortunately, I was able to see the Chief Midwife and complained to her. At a close observation of his forehead, so I thought; she told me my son had Down syndrome!
I asked her what that meant because I had never come across the word before. She told me to look it up on the internet. I asked her if it’s a terminal disease, but she assured me it would only affect the speed of his intellectual and physical development. She also advised me to conceive as early as reasonable because it might not affect my second and subsequent children.
Thus, I left for home with many of my questions not satisfactorily answered as far as I was concerned, I was greatly worried.
At that juncture, I decided to change to a government hospital. Oni & Sons Children Hospital, Ibadan, was the next port of call.
A pediatrician attended to him, asked me questions and told me she would not presume my baby’s condition without adequate examination. However, she suspected the blood exchange carried out previously in the Catholic hospital might have been carried out belatedly and that could have affected his mental and physical development process. Assuring me that I should not worry, my son would do what other babies do but at a relatively-slower pace.
So, we were referred to the physiotherapy department of the children’s hospital where we were advised to take advantage of the services so that his condition would not deteriorate.
The male physiotherapist who attended to us the first day asked me the medical history of my son. I told him all. He said,‘Madam, take a closer look at your baby’s eyes, you will see there is a problem’. He said further, ‘just pray to God it is not Down syndrome’.
At that point, I summoned courage and replied, ‘Are there no parents with Down syndrome babies as patients in this hospital?’ He answered me in the affirmative. So, I said, ‘though I am not sure what my son’s condition is yet, if it turns out to be the suspected Down syndrome, itwill not be the end of the road. What about parents with sickle cell anemic children and other more serious disabilities?’
Actually, I was angry with him, and not only with him but also with his colleague, who dashed in while my son was on the physiotherapy table for treatment. His colleague casually asked him in Yoruba language, ‘This one is Down syndrome?’
They were not even mindful of my emotions or the negative effect their unprofessional comments could have on me.
After that event, I decided to make up my mind and unperturbed about the discouraging attitudes of those who should know better in a situation like that. I was determined to keep the routine appointments for his physiotherapy exercises.
On one of those appointment days, a female physiotherapist met with me and told me categorically that my son was indeed affected by Down syndrome, which invariably would affect his mental and physical development. Moreover, she recommended a special wooden chair for him; the chair with a belt to fasten him to it.The care she stated, would be for two years.
Isaac was five months old then and coupled with that, his neck was not yet steady, which was another cause for worry.
Down syndrome is a genetic disorder which occurs when a child is born with 47 chromosomes instead of the normal 46 in humans, each normally contains 23 pairs of chromosomes (male, female) but in a child that has Down syndrome, the cells of the 21st chromosomes are divided into three instead of two, the extra genetic material present in the 21st chromosomes is responsible for their unique facial appearance, mental retardation, and intellectual disability. Downsydrome is named after John Lang, Down, the British Doctor who first described the condition in 1887.It was in 1987 however that an extra chromosome was identified as the cause.
The physical features associated with Downsyndrome are flat facial features,small head and ears, a short neck, bulging tongue, eyes that slant upwards, and poor muscle tone.
Statistics = about 6000 babies are born with Down syndrome which is 1in every 700 babies, between 1979 and 2003, babies born with Down syndrome increased by 30%. Progressively, it has been on the increase.
Those at risk ate mothers who gave birth above 35 years although young mothers still have them.
The reality now dawned on me as I left the premises of the hospital, in fact I was feeling dizzy, not able to see people clearly, I was weak and heartbroken.
A stone throw from the gate of the hospital, there was a phone call business centre with a lady operator having a discussion with two elderly women whom I later identified as Jehovah’s Witnesses; they noticed that all was not well with me.
One of the women called me and asked me what was wrong with my baby. I told her briefly. She exclaimed, ‘Down syndrome, God forbid!’
She then looked at the baby and spoke in Yoruba language to her colleague but I didn’t understand what she meant. Later, she turned to me and said, ‘my daughter, let me not deceive you, the baby has it. My advice is that you get pregnant as soon as possible and add more children to him or if you cannot take care of him, you may go and drop him with your mother.’
After the counseling, she preached in a manner that did not tally with my own faith. Despite the differences in our beliefs, I thanked her for her concern and believed God stationed them there at that material time to douse the tension of the impact of the female physiotherapist’s report on me.
I assured her of my determination to care for my son to the end whatever the situation would be, that made her to encourage me to be confident and fearless. The whole encounter; sharing my worries with them and their counsel went a long way in relieving me of the tension I had.
Back at home, I was alone with the baby because my husband had gone on a business trip and got stranded there.
Some days later, two other Jehovah’s Witnesses came to my house on evangelism; I should not forget to mention how much I love reading the Awake magazine- a publication of Jehovah’s Witnesses, which is very rich in substance on any topical subject of discuss. I cultivated this habit during my university days as a student of Mass Communication. It was an added guide to my report writing tasks because the Awake magazine reporters are second to none.
So, I requested for the editions from them and I was given five different editions. I selected two out of them.
At leisure one day, I picked one of them and flipped through the pages but to my pleasant surprise, one of the topics was on Down Syndrome- its definition, statistics, prevalence; and care and support. Two cases were mentioned of mothers who had successfully brought up their affected children who were able to make their impact and mark in life.
With these pleasant factual stories, I was convinced that life could go on for my son despite the diagnosis. It’s all about adequate medical attention and care giving;and above all- with God, all things are possible.
Apart from the success story of the two mothers mentioned earlier, there were photographs of other Down syndrome children who were now mature and coping with their condition. All these were enough evidences for me to know that, ‘it is not over until it is over’.
When my husband came back eventually from the delayed business trip, I gave him the publication to read too, and I told himthe feedback from the physiotherapist. Initially, he was not comfortable with the new report; he rather felt the consultant pediatrician’s position that our baby was a normal baby was more acceptable. Consequently, development proved him wrong and as a result of that, we made up our minds to give our son the best care we could; and that we have been pursuing earnestly ever since.
When Isaac was fifteen months old, he had started teething like other babies but this was accompanied with high fever. We made sure we went to the hospital regularly.
On one of those occasions when he became weak, I quickly rushed him down to the children’s hospital for treatment. Instead of the doctor to recommend a test to be carried out on him, to my greatest surprise she prescribed some drugs. I sheepishly took the prescription list but I felt the young doctor had not done the right thing; the baby should have been properly examined. ‘But she is a professional’, I reasoned. That singular decision almost caused my son’s life!
At the point of purchase of the prescribed drugs, the pharmacist who was my regular customer by then, looked at my baby and said, ‘Madam, this baby is too weak to be given some of these prescribed drugs’. She said it didn’t matter even if they were the doctor’s prescription but I decided to follow the doctor’s instruction. I can remember the pharmacist discouraged me from using a particular one for him, it was a cough expectorant.
About six hours after medication, my son’s condition became worse; he was turning pale and weaker. We rushed him to the Emergency Unit of the University College Hospital, (UCH) Ibadan; by then he had gone into a state of coma. When his Packed Cell Volume (P.C.V) was checked, the result was just 14.
Another blood transfusion had to be carried out on Isaac, the situation was critical but he survived it to the glory of God. Three days later, he was transferred to one of the children’s wards. There, the doctor who attended to us informed us that her senior colleague would have my baby properly examined. When she came to do that, she confirmed that the child has Down syndrome
Later, she invited me to her consulting room in company of her team of doctors and there more details about the condition were further explained to me. When I disclosed the fact that I had already been informed and had prepared my mind for the task of raising my baby to live up to his potential despite the challenge of the condition, the doctor was happy for such a display of understanding and commitment and encouraged me to keep to it.
Back to the ward, Isaac became a case study for most of the student doctors but I was no longer bothered, because I discovered that my baby’s condition was much better than most of the babies on admission with him.
It is so long a story but a simple synopsis of agony of a mother faced with a condition that was hitherto strange, coupled with stigmatization by those who should know better like some doctors, Christian friends, clergy; and others who rather made it more excruciating.
My story is an effort to encourage other women who may find themselves in my shoes not to die as a result of ignorance and uncertainties associated with the condition, before they can come to terms with the basic knowledge about Down Syndrome and consequently discover there is still hope for them and their children/wards as we shall see in the series of excerpts of my book titled : Care and Support for Children Living with Down Syndrome – A mother’s empirical account.
Blessing Amaechi is a prolific, writer, and a singer, She holds a degree in Mass Communication from Rivers State University of Science and Technology. Port Harcourt Nigeria. A social worker, interested in women and youth development, her first book is titled: A Lifestyle Free of HIV/AIDS.
Down syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability. The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an 8 or 9-year-old child, but this can vary widely
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