Bittersweet tales of raising children with Down syndrome

■ We don’t regret having them –Parents

When a child with Down syndrome (DS) is born, a bittersweet cloud hangs in the air. It’s a mixture of emotions. Parents at the birth of their child re­ceive condolences instead of congratulations. Same feeling remains till date even as the world marks DS day today.

Like every proud father, Muyiwa Majekodunmi was ecstatic when he learnt that his wife has been delivered of their first child – a baby boy. When he heard the sound of his baby crying from outside his wife’s hospital room, he knew his life would never remain the same again. The doctor came in and bluntly told the Majekodunmis that their son – BJ, has Down syndrome. The news sunk in but Muyiwa was confused. “The doctor mentioned Down syndrome to us but he never explained to us what it entails bringing up a child like that. It was a very confusing period for me. We were left in ignorance, as to what the condition was, what to do and how to go about it. I had no idea what to do with my child. Until much later when I met Dr. Akindayomi who set up the CDC (Children Developmental Centre). She gave pieces of information on how to raise my son. And later on, the Down Syndrome Foundation of Nigeria (DSFN) came up to assist”, he told Saturday Sun.

Kids with DS are usually born with some medical issues but Mr Majekodunmi counts himself lucky because his son, BJ came with no medical ‘baggage’. “I learnt that kids with Down syndrome come with a lot of health baggage but BJ has none of such issues. Although he had breathing problems, that could be from genetics because I also had problems with my bronchitis. BJ had no major medical condition. And I think we are luckier than some parents that had kids with serious heart condition that require them flown to India for surgery, where there is a chance the child might not survive.”

But Mrs Helen Jideonwo was not that lucky. In 2000, she was delivered of a set of twins with DS. And she describes her expe­rience at early stages of having her twins- Favour and Martha, as ‘shocking’.

Her agony started at the late stage of her pregnancy. She complained to her antenatal care givers. But she continued to experience the excruciating pains around her abdominal region. It was a strange experience for her because she had successfully been delivered of three children. But the fourth pregnancy had entered the 10th month, and was drag­ging her through much stress and pains.

The clinic she usually went for antenatal care whenever she was pregnant, recom­mended that she should go to a bigger hos­pital to be scanned. The scan revealed that Mrs Jideonwo was carrying a set of twins. And the twins were not properly positioned in her womb. Mrs Jideonwo, disclosed that the scan revealed that one of the twins was sitting with her leg crossed while the other was barely in proper position. The weights and the bad posture of the twins gave her harrowing pains and discomfort. “I have birthed three kids. So, I was baffled at why I’m experiencing so much abnormality in my fourth pregnancy. I bore them for 10 months and when doctors failed to correct  their bad-posture in my womb, they re­solved that I would have to be delivered of the babies via Caesarean Section (CS),” she reminisced.

After the CS, Mrs Jideonwo noticed dif­ferences between her babies and her other children. “When I saw the babies, they didn’t appear normal. I noticed their eyes and palms appear different from the other babies that I had. I also noticed they had very small legs and their necks seem very weak to carry their heads. I asked questions but nobody was giving me answers. And I became worried.”

In her worries, Mrs Jideonwo found sol­ace in her husband who kept consoling and encouraging her that all would be well. But one year later, one of the twins became se­riously ill, and was rushed to Lagos State University Teaching Hospital (LUTH). “It was in 2001 that we were told about DS for the first time. I didn’t understand what it meant, so I kept on pestering the doctor to explain to me what was wrong with my child. The doctor said a lot of things that I still didn’t understand. But all I could de­duce from what he said was that if a normal child would walk in one year, a child with DS would walk when he is two years old. And if a regular child talks at two years, a child with DS would start talking at age three.”

Those moments became her most trau­matic period. She had to stay for four months at LUTH taking care of her sick child. “In fact, I saw hell at that time. And at a point I gave up hope of her surviving the illness. I switched my prayer point pleading God to please take her so that I can return to my family. But she survived and I believe God knows why He kept her alive.”

Time was when in some parts of Africa, parents arrange to throw away their babies because he/she was born with DS. Mrs Rose Mordi, founder of DSFN and also a mother to a Down syndrome child, told Saturday Sun her own experience. “An in­cident happened when I went to my home­town in Calabar. A visitor came to visit my sister and saw little Awele – my daughter with DS. He called my sister aside and told her that my child was a snake, and that he would help us dispose of the baby in the river. My sister just laughed in disbelief, and warned him never to say that to my hearing. So, just imagine how many chil­dren with DS that have been allowed to die or were thrown away to get eaten by wild animals.”

However, because of the cost and dif­ficulties in raising a child with disability, some countries especially in Europe and America, allow parents to abort any preg­nancy confirmed to contain a child with special needs like Down syndrome. The parents are also allowed to put up their child with Down syndrome for adoption if they feel they cannot cope with the chal­lenges of taking care and raising them.

But for Mr. Majekodunmi and Mrs Jideonwo, that was the last thing that ever came to their minds. “BJ is my first child. The rest of my children were not born with Down syndrome. A child with Down syn­drome has some challenges. They are slow but at the same time, I think a lot of it starts from the foundation. I treated BJ like every other children. But I learnt to be a bit more patient with him. I have absolutely no re­gret to have a son like BJ. Many parents are ashamed of theirs but I’m not of my son,” Majekodunmi said.

Growing up, BJ has morphed into a mu­sically gifted chap. He loves to play the drums, congas and tambourines. “He has an innate sense of rhythm. He also has a very retentive memory and does domestic duties responsibly. BJ is such a wonderful fellow,” says the proud father.

He recounts the most memorable experi­ence he has raising a child with DS: “I’ve had so many memorable experiences with him. One of such was when he was only three years old, he showed a high sense of compassion. I noticed this when I was go­ing through a very terrible time in my life. Everything seemed to be collapsing around me. I was so helpless and felt hopeless. I was sitting in my parlour, my right hand carrying my chin as I was buried in deep thought. BJ then came up to me, pulled down my hand and left. I went back to that position again unconsciously. He still came again, pulled down my hand and smiled. And what I understood was that he was trying to tell me to stop worrying so much about anything.”

For Mrs. Jideonwo, her twins have grown so well and healthy, and have brought so much shine into her life. “They are very loving. Everybody around them becomes their friend. I can’t ask God why He gave me a set of twins with Down syn­drome anymore, because now I’m so proud of them. And I go anywhere with them.”

What lies in future for a child with DS, is one knotty issue parents grapple with. How could they face the pressure of adult­hood? Can they have a normal career life? Can they settle down and raise a family? These are some few questions that bother parents and caregivers.

BJ would be 27 years old in October and these questions prick the mind of his father, Muyiwa. “Honestly, it also gives me a lot of concern. Concerning building a career, I want to look at what we can do with what he loves doing. He loves music, cleaning and singing. We could get him to join a band where his talent would flourish, or encourage him to start up a cleaning firm.”

On settling down with a wife, he ex­pressed regret for not starting early inter­vention for his son. “I missed out on a lot of opportunities about his developmental growth. I have absolutely no idea about what life has in store for him. My duty as a father is to create that enabling environment for him. Children with Down syndrome in reality would always be children. But in de­veloped countries, they do get married but they are not totally independent. They are still placed under supervision but we don’t have the kind of facilities they have abroad. I really can’t answer that question. And I call parents to start early and avoid mak­ing the same mistakes I made. They should start the social and educational integration early enough so that they can have a firm foundation to stand on”.

Mrs Jideonwo also had concerns wheth­er her twins would ever get married until she watched video clips of individuals with DS that settle into matrimony.

For them to have a secured future, Mrs. Mordi, who has been in the forefront to improve the lives of children with DS, be­lieves that it is important for government, especially at the highest level, to make provision in the constitution that backs and protects activities and daily living of individuals with disability. “We have done every single thing possible to reach out to them, all to no avail. There are four key ministries that should handle what we are dealing with-the Minister of Health, Edu­cation, Youths and Sports and the Women Affairs. But we have never received any form of support from them. We have done everything to get in contact with them, all to no avail. The little support we get comes from the corporate world, churches and in­dividuals. We don’t have any sustainable means of support. But we thank God a lot of people now come to render some form of assistance in bringing up these children”.

As the world marks Down syndrome day, parents of children with DS have been urged not to be ashamed of their kids. “Parents shouldn’t cage any child no mat­ter what. You can guide and teach, but let children express themselves the way God designed it. Parents should love their chil­dren no matter the condition in which they are. When a parent doesn’t love a child, the child will learn nothing but hatred,” said Mr Majekodunmi.

According to Mrs Mordi, ‘ignorance’ is one major bane hampering many parents in accepting and giving love to children with Down syndrome. “So, many parents aban­don these innocent children because they have DS. Ignorance is the bane of our so­ciety and there is need to properly educate parents on what we are to do. I keep telling families that these children come to us as a problem, but they are a blessing in disguise. When you come close to them, they radiate calmness, they have that innate ability to show love”, she added.

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