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Our Battles with Down Syndrome

To commemorate this year’s World Down Syndrome Day, Gboyega Alaka sought audience with parents of children with the condition. What is the level of acceptance and what are their chances in a complicated environment like Nigeria?

What do you do when you are delivered of not just one but two children with Down syndrome? That was the predicament Helen Jideonwor, a staff of Down Syndrome Foundation, Lagos, found herself 20 years ago. Bleak? Maybe if there is a better word to capture it. While she admitted to not knowing anything about the condition or name back then, it is not unlikely that Jideonwor, like many other parents, had, at some point, come across persons with the condition and either shown empathy or despise – as the case may be, and pushed the memory far away.

Down Syndrome, as puts it, “is a condition in which a child is born with an extra copy of their 21 chromosome – hence its other name, trisomy 21. This causes physical and mental developmental delays and disabilities. (Symptoms: Congenital heart defect.)

It states further that “many of the disabilities are lifelong, and they can also shorten life expectancy”, even as it states that “people with Down Syndrome can live healthy and fulfilling lives.”

In general, many see Down syndrome and most intellectual disabilities, as a condition likely to happen to some far away unknown persons, or to their enemies, but never to them.

However, Rose Mordi, Founder, Down Syndrome Foundation, an organisation founded in 2001 to provide interventions and training for children born with the condition and who herself, has a 34-year-old daughter with the condition, says “It’s a condition that can happen to anyone.”

Asked how she felt when she discovered her twins had the condition, Jideonwor said, “There was nothing I did not think. I even asked God why he had to give me, a poor woman, such children. Prior to that time, my belief was that only wealthy people had those kinds of children.”

Ruth and Ugochukwu Ugwuegbulam

In the first place, having a set of twins after two children and at 30 was an oddity for her. She also could not confirm their condition on time; even though there were signs that that particular conception was different.

“I was having challenges with the pregnancy and was being referred from one hospital to another. At a point, I asked one of my doctors, ‘Please, can you tell me what is wrong with this pregnancy?’ Then he started asking about my family history. I asked why? He said nothing. You know how doctors can be evasive. Meanwhile, the two of them were not sitting well, and I was place on bed rest for two weeks. In the end, they had to perform a C-section to take out the girls. Immediately I saw them, I knew they were different from my other children; although I couldn’t tell exactly what. They looked oddly beautiful like Chinese children and my husband was excited. He said, ‘Nkem, our children are beautiful’. In my mind, I thought: This one does not know anything.”

She noticed that the pair’s legs were not straight, or rather wide open. Each time she straightened them, they opened them wide. They also looked unusually pale, had short fingers and big round eyes. Clearly, she was convinced that they were different, but confused because she had no one to consult. Three, four months later, one of them, Lucy, took ill and was referred to LUTH (Lagos University teaching Hospital) and that was where she heard the phrase, Down Syndrome for the very first time.

“The doctor started asking me suspicious questions, so I braced up and asked, ‘Doctor please, my children are not like other children; can you tell me what is wrong with them?’ He said, ‘Yeah, if they are supposed to walk in one year, it may take them two years or more because of who they are.’ I asked ‘Who are they? What do you mean?’ He said ‘Because they have Down Syndrome.’ When I tried to probe further on what that meant, he said, ‘Later you will know.’”

Subsequently, she said she continued with the stress of raising them, which she described as ‘very stressful.’ She actually thought all hope was lost until one evening, when she saw Rose Mordi on TV, talking about children with Down Syndrome. She already knew Mordi in church and had observed that her daughter, Ewele, was somehow different, but she never gave it a second thought. On this occasion, however, she paid attention. She followed up with Mordi’s instruction and they started a relationship. “She would come to my house to ask after the twins; she told me how to go about steadying their necks. She started encouraging me and that was how Down Syndrome Foundation started. It started in Ogunlana Drive, Surulere, Lagos, before we moved to Fagba area of Lagos.”

Now that the girls have crossed the 20-year mark and reached the age of puberty, how does she hope to ward of the danger of men who may want to take advantage of them? Jideonwor sighed and said, “That’s the biggest challenge for me as we speak. As a mother, it is my responsibility to be watchful and ensure no evil comes to them. So now, I don’t leave them at home. Anywhere I go, I take them; anywhere you see them, know that I am at their back. We stay upstairs in our house, so I tell them, do not go downstairs.”

On possible marriage overtures, Jideonwor laughed and said, ‘If you’re marrying them, you’re marrying me, because I can’t stand anyone maltreating or calling them names. But if I’m convinced it is genuine love, maybe. In fact, when we get to that bridge, we will cross it.”

She has also bore insult on their account. “In buses, you’d see them shifting, as if to gain a mile; as if it is contagious. But I just ignore them and move on.”

On how well they have coped with education, Jideonwor said, “They’ve been doing well. They’ve been at Down Syndrome Foundation since Year 1. Now they can spell their names, they know our home address, although they don’t know much about reading and writing. They are learning to use their hands and they are trying in the area of hair making. Also, they are quite receptive; they take and obey instructions.

Jideonnwor explained that she came to work at the centre on account of her children. “Since I’m also a parent, Mrs. Mordi called on me to join her in training the children and I accepted.”

She is, however, grateful to God for her kind of husband. “He does not joke with them. Even when they are sick in the hospital, he is always there with them.”

Like Jideonwor, Ijeoma Fyncountry, a lawyer, also had a set of twins. However, she is fortunate, as only one of them came with the condition. She also went through the denial, unbelief and ‘why me’ moments.

“I asked myself, ‘what have I done wrong? And then I moved to the blame stage. Maybe it was something I did or didn’t do. Perhaps it was the way I slept during pregnancy; or my husband. Maybe he had committed some big sin somewhere. And then anger set in. I was angry at life, angry at God. I recalled that I prayed for a perfect child; why did He refuse my prayer. And then I moved to acceptance. All these five stages lasted just about two weeks. A day after I was given the diagnoses that they had Down Syndrome, I hit Google big time, and believe me, there were lots of materials.”

Admitting that all she knew about the condition was the name, Fyncontry said she had however always wondered why some people looked the way they looked and usually went out of her way to show empathy. In her case, she had to undergo C-section at 33 weeks and didn’t get to see her children until three days post delivery. “When I finally saw them, I saw that the boy was fine; I noticed, however, that the girl was looking a little different. She looked unusually pale and weak. I also noticed that her face was not as pronounced as her brother’s. But it didn’t hit me that it was Down Syndrome. I had them 2016. They’re five now.”

Following her findings on the internet and the full realisation of what she had to contend with, Fyncontry said she faced her cross squarely. She didn’t hide her but at the same time didn’t push her out there. She kept her space and because Peace – that’s her name, was plum, a lot of people really never noticed – except they were medically versed. Also her grandma was on ground to baby-sit her and they always went out in the family car.

Because one of her twins didn’t have the condition, they used him to benchmark the milestone stages. “Once the boy gained neck control, we started setting her right as well; so the gap wasn’t much.”

Through the internet, she also discovered Down Syndrome Foundation and had been having a relationship with the centre two years before she fully enrolled her daughter.

Death wish

As a mother, she recalled that her first fear was about her daughter’s survival in a country like Nigeria, where there are no resources or facilities. “Honestly, I’m not proud to say this, but at a point, I thought, is it not better that God took her back? Not because I hated her, but because I was afraid for her future. But I quickly learnt that I had a lot of roles to play in her life and started strategising. I really could not afford to have her depend on me for life. I want her to be able to lead as much independent life as possible.”

Going by her experience and her daughter’s progress at the centre, Fyncontry has since joined the early intervention advocacy, encouraging parents with such children to make hay.

“Hiding your child will not do you any good. That is why we always advocate early intervention. Age 0-5 is especially critical to get them into the intervention programmes of physiotherapy, occupational therapy, speech therapy and a whole lot, including medical check-ups. We started at 12 months. She was able to walk independently at 27 months and I can tell you that the impact the education she is getting cannot be underemphasised. Now she interacts very well.

“Let me also say that I am one of the lucky mothers because Peace practically grabs everything we tell her. Tell her, ‘Peace, bring your shoes’, she does; ‘bring your pillow,’ she does. She also knows her stuff and if her twin brother reaches out for her toys or shoes, you can be sure a tussle would ensue.

“She is also grounded in the usual children mischief. Tell her don’t go there, and the next minute she’s going there and looking at you through the corner of her eyes. And when you make to go after her, she smiles and takes to her heels, laughing.

“Peace is loving, quite intelligent and that is why I really don’t like it when people say, ‘despite her condition.’ If you observe any child with Down Syndrome that grew up in countries where things are right, you’d see that they are like every other child.”

In all, Fyncontry says, “The major and primary concern for me, which I believe resonates with every other parent or caregiver, is ‘What is the future going to look like, considering all the prejudices and our harsh environment. Is my child going to thrive and become what she wants to be? Are there provisions for her to reach her full potentials? Sadly, I must admit, this is not the case, except for few organisations like Down Syndrome Foundation. Imagine people using words like ‘imbecile’ to describe them?”

Internet, our saving grace

Ruth Ugwuegbulam and her hubby, Ugochuckwu are one couple who also have a child with the condition. However, they also have the internet to thank, following early confusion and near disillusionment. Meeting Rose Mordi, who had come to give a talk at her NYSC camp was however the icing on the cake for a bemused Ruth.

After her son, Shedrack, was sent packing from the regular school she had enrolled him for biting a fellow pupils finger, Ruth Ugwuegbulam knew she must look for another option.

“He had bitten another child and the parent was threatening to withdraw her child and incite others to do same. The proprietor even refunded half term fees. Even while he was in the school, I didn’t get the respite I desired, as I always found him in deplorable condition every time I went to pick him after school. It’s either he was naked, without shoes or in the corner of the class doing some funny things. My husband was abroad at the time and I bore the brunt all alone. We were at home for one year. Meeting Mrs Mordi, however, changed things for me. We enrolled him at Down Syndrome Foundation in 2010. He was around age 6 then.”

Not long after, she took in again. She confessed that she was scared until her fear was allayed at a seminar, where she was told that the likelihood of having another Down Syndrome child was low. She has had two other children after that without any issues.

Asked if she faced the dilemma of hiding him or contended with curious looks and questions, Mrs Ugwuegbulam said, “Because he did not walk on time and was quite big, I got expressions like ‘Madam put him down, let him walk.’ And when I told them he couldn’t walk, they really never believed me. But I’ve never hidden my son because I was exposed to information on time. Aside the internet, we also attended seminars and joined support groups, where we encouraged each other.

“However, with family, the story was different. I heard family members call him ‘a swimming snake’ because he didn’t walk in time but could crawl miles on his stomach. Some even called him ‘deaf and dumb’ because he didn’t speak on time. However, with outsiders, I never hesitated to give it back in equal dose. I’m proud of my son. Once we attended a gala night abroad that had over 3000 guests and my son climbed the stage and we were seeing him on the big screens in the hall. That was because we started intervention early and had information. And my husband does not joke with him. If he hears that somebody hurt him, even if he were abroad, he would almost want to stretch his hands over the phone to fight for him.”

Love unlimited

Her hubby, Ugochukwu, literally echoed this, when he said, “I love the boy and I have vowed to do everything possible to give him a better life. And if anybody messes with him, I will never spare a naira for that person, be it a relative or friend.”

This was in response to a question about the cost of the boy’s education.

In between his rejection by the regular school, Ugochukwu said, “First I saw a school somewhere in UNILAG, where all the children were on wheelchair; but I said no, I wasn’t going to send my son to such school because he was not cripple. Later my wife discovered this place and we settled for it. Some relatives were like, why are you spending so much on this boy? For how long are you going to do this? But I was beyond caring. I have to give him the best. Afterall, he did not create himself.”

Recalling the trauma of the early days, Ugochukwu said, “We went from hospital to hospital looking for solution. The bad part was that they didn’t even recognise his condition. We even went to Yaba Psychiatric Hospital. At University of Benin Teaching Hospital, they told us he had to undergo a test, but they didn’t have the equipment. I reached out to a relative in the US, but he was reluctant, so I became fed up and resigned to fate. I said I wasn’t taking him anywhere anymore. Let God do with him whatever He wants.

“And then she got pregnant for our second child. By that time, Shedrack was about a year old, yet he could not talk, could not walk, but he could eat and look. And the neck was not stable. We searched and searched whether anyone in my lineage had any such history, but we couldn’t find any. A bit later, somebody told me that one of her father’s children had a hole in the heart and died. A relative told me that was the link; that it must be from her. But I didn’t believe it and never brought it up with her. We are from different tribes: I am Igbo, she is Ishan and pursuing such line could destroy our relationship.”

Friend of children with Down Syndrome

Interestingly, Ugochukwu said he somehow had a penchant for attracting children with Down Syndrome anywhere he went. “Even in the UK, you’d see them coming to hug and show me love. And this amazes me. One came to sit on my laps in church and her mother was embarrassed and apologetic, but I told her not to worry, that I was used to such gestures and that I had one of her kind. I gave the girl a gift.”

Relatively, Ugochukwu said, the fee at the centre is relatively okay, considering the fact that the boy lives at the centre and only goes home with them on special occasions like this (Easter).

Biggest fear

“My biggest fear initially was that he had very tiny penis and I was afraid he may not be able to copulate, but they told me at a counselling session that it would shoot out. And in truth, it did after a while. However, my biggest wish is to have him get married to a normal person, who will be able to support him and have a child for him. So far, I am yet to see any Down Syndrome person father a child. Because I know we are not going to be there for him forever, I have also been putting something aside for him. I also impress it on his brother to take care of him because he cannot defend himself.”

High moments

For some reasons, his wife chipped in that Shedrack started talking without the help of a speech therapist, and he has grown to become one of the most vocal at the centre, achieving self-social skills, communicating quite well, even going on simple domestic errands in the house.

“Now my son is a singer and dancer in church and doesn’t like being caged, when he is moved to express himself. He is also compassionate and hardly able to ignore me in my low moments. If, for instance, his dad is not around and I’m moody, he’d come and pull my hand from my chin and say, ‘Mummy, are you thinking of your husband?’ That inevitably brings smile to my face. Sometimes they give him awards for being the most social pupil; I mean, I’m a proud mum. So there are high moments with him.

‘Why me’ moments

“There were times I secretly wished I did not have him. At other times, I’d say ‘God, since You gave him to me, change him. The truth is that taking care of them can be tiring, especially those times when inability to control their bowels takes the better of them; or when they are unable to use the toilet properly.

“So we’re also praying to God to help us help the children, because we cannot throw them out of the window.”

No Known Treatment Yet–Nurse

MULIKAT Oluwaseun, in-house nurse at Down Syndrome Foundation, echoed’s definition of Down Syndrome, when she said, “Down Syndrome occurs when Trisomy 21 multiplies itself. You know we have different cells in our body. It occurs when this particular cell comes out double, either with addition from the father or mother.”

She dismissed the notion that it comes with old age in the mother or father, citing instances where teenagers and persons under-30 have given birth to them.

Asked if the condition could be detected at pregnancy, especially for parents who may want to terminate them, Oluwaseun replied, “I think yes; but I don’t think we have that facility in Nigeria yet. Even in those countries, it’s a 50-50 chance. The possibility of the child not having the condition is also there; and that is the risk in such exercise.”

Oluwaseun also said there is no known cure for the condition yet. “For now, all that can be done is to support the child: like give them early intervention; help the child medically – most of them usually have congenital heart defects, otherwise known as hole-in-the-heart. So, if the hole in the heart is blocked or corrected, they may be able to live a normal life.”

She also said it is not possible to outgrow the condition yet, insisting that that is why early intervention remains the best way of getting the best out of them. “When you detect and start working on them early enough, you can help them achieve some level of independence and achieve basic needs.  There are some of them that that are up to 35 years of age and yet cannot wear boxers or panties on their own. That is abnormal, but the blame goes to the parents who failed to attend to their needs in time.”

Asked if they are sexually active and can procreate, Oluwaseun said, “They even have higher sexual urge; so what we do is guide them. They are not different from us; what happens to every other human, also happens to them; sometimes, doubly or more. However, I am yet to read or hear of anyone that fathered a child. It has never happened, even abroad. We’ve had cases where they marry each other, but I’m yet to see them have children. Someday, somehow, science may work wonders or God can perform His wonder.”

The Nation



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