Children's Health Multimedia

A special Gift: a mother’€™s story of Down syndrome

Written by Fathima Simjee

Down syndrome is a chromosomal disorder that affects approximately 1 in every 800 children and results in mental as well as physical disability. As this insert shows, information is the key to not only accepting your child’€™s condition, but also in being able to provide the specific care that your child needs.

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Gift

4 years ago Doreen Gomba gave birth to a child who seemed perfectly healthy. But a few days later she got news from doctors that her newborn son had down syndrome.

He said that Gift is not well, he is not a normal child, he has down syndrome. So I didn’€™t know anything about down syndrome. I ask her what is down syndrome? She said that down syndrome is a genetic disorder. Your child is disabled. So I become so frightened. I become so afraid, scared, that how could I give birth to a child like that one.

Doreen was so shocked by the news she found it hard to accept her sons disability. But it was a doctor who helped her take her first steps towards realising how special her son was.

I don’€™t know what to call him. And he said just call him Gift, because god gives you a gift and you must accept it. Your child is Gift from now so please call him Gift.

Her next fear was how the rest of her family was going to take the news

How is my husband going to accept this? Because other people they say it is in their culture there is nothing like that. I can’€™t have a disabled child. Why must I now have that child. So I can’€™t accept it. I said no it is not my fault and it is not your fault so you have to accept it. You must give your child love and you must accept him and treat him like the others. So he was having these complaints, those things. So even if his family was here they were saying why is this child not the same as the others? He doesn’€™t know how to talk; he’€™s going to be a stupid child. You see all those nasty words.

Doreen’€™s husband and father to her 5 children left them. Now they’€™re only income is the disability grant that Gift receives. Doreen can’€™t get a full time job because Gifts condition means that he is often hospitalised.

So life is very difficult. Especially Gift. Gift can be a problem really. When he start getting sick. Because the down syndrome, they get chest infections. Because when they get back they have holes in their hearts. Gift was having three holes.

So most of the time I must spend it there at hospital. And the sisters told me your son’€™s life is in your hands, because whenever I’€™m not around at the ward he is not going to say anything to anyone, he’€™s just going to sit there and be quite. But if he sees me coming he’€™s going to be happy.

Doreen got as much information she could lay her hands on about downs syndrome so that she could care for Gift properly. She also went to support groups. They helped her feel less alone.

It is difficult to raise a child with down syndrome but as you meet other moms in the support groups, you become better. Because as you meet other mums they will tell you about the difficulties that they faced and then you also tell them and you share those stories and you feel better than I’€™m not alone. Other mums are also having the problems that I’€™m having.

Although it was difficult to tell her friends and family about Gift’€™s disability, she didn’€™t want to hide it or make him feel ashamed.

So I was a bit scared to tell them what’€™s happening. But as I learn those things through the magazine and other moms from the support group, I was so confident to tell them that my son has down syndrome, he has 1 2 3 problem, he can’€™t talk and he points at things that he wants. And if he wants to go to the toilet it is a bit hard for him. Even my children in the house, I sit them down and tell them that this one is not the same like you so you must treat him well. So actually my friends, my neighbours, my family are very supportive because I was open to them. I told them when he was young, I sit down and told them my child is not well but I’€™m not going to hide him in the bedroom so that people cannot see him. I’€™m going everywhere with him, so people know him.

She is determined that her son will live as normal a life as possible

Because now I’€™m learning with the children that are older than him, that they must get a job. They must work with the normal people. They mustn’€™t be on the other side, being alone there. They are inclusive now.

Doreen believes that having Gift has made her a better mother and a more caring person.

So that’€™s why I say I’€™ve learnt a lot and my life has changed. So I thank god for giving me this child, firstly I was crying and I was terrified, but now I thank him.

About the author

Fathima Simjee

Fathima Simjee is a television journalist with Health-e News. You can follow her on Twitter @FatzSimjee