My Down Syndrome Story – Bisi

My Down Syndrome Story – Bisi

Meet Bisi

Bisi is an old friend of mine from law school. We happened to have been expecting about the same time, and we would chat every now and then leading up to delivery.

Up until a few years ago, I never knew that beautiful Omorinre was born with an extra chromosome (down syndrome). This was not because Bisi was hiding her – as this has been a norm in the part of the world we come from for years! But it was because it did not change or affect her cheerful and lively spirit in any way.

Please read Bisi’s candid story…

My name is Olabisi, a Commercial Lawyer with one of the New Generational Banks in Nigeria. I am a Mother of two beautiful children, a beautiful Girl and a wonderful Boy.

I think it’s best I start with her full name as I honestly believe that God gave her those names so that we can continually prophesy daily into her life. Omorinre Oluwatetisimi Oluteleayomi(my first child) was born at about midnight some 4 years ago with a unique extra chromosome( Down Syndrome).

Throughout the 9months of pregnancy, I kept having this funny feeling that something was wrong. Even after I went to my genealogist and he confirmed everything was good and I had nothing to worry about! I kept going to private diagnostic centres by myself for scans, and I even had one done which was claimed to be ‘3D’, and I was assured that all was well.

My husband passed off my feelings as anxiety of a 1st time mum. Looking back, I suspect maybe they knew something was wrong but couldn’t tell me or something.

At what point did you realise there was something wrong?

Immediately after her birth, I must confess that as a first-time mum I was worried about how much hair she had – as I had been afraid she may be bald like her dad.

I noticed that the doctor and nurse were discussing in hush tones around her and I recall asking if everything was okay and I received an affirmative response.

Three hours after her birth – when I had finally started to sleep after thanking God for a beautiful baby girl, a young resident doctor came into my room to inform me of the suspicion that My daughter, the beautiful girl I just birthed had down syndrome (Looking back now I think her approach was rather insensitive). I recall asking the young doctor how old she was and how many years she had practiced medicine and quickly dismissing her. The moment she left my room, I said some serious prayers rejecting the news.

I also called my sister who is a medical doctor to alert her of the news I just heard, and she arrived early hours of the morning and confirmed my worst fears.

Then the journey started, we saw different doctors, and different tests were out, she had to have a surgery 3 days after her birth after which I was told she had a massive hole in her heart which cut across all four chambers, and that she needed to have another surgery. This surgery we were told could only happen when she gained 5kg. This mission was almost impossible as she was too weak to suck either from the breast or bottle.

When I look back now I think I just became a robot who was programmed to do all that I was required to do. I was to report to the hospital every other day with her to visit the cardiologist who will look at her heart. Feeding her was heart breaking as she had no energy to suck the bottle (We were given a high-calorie formula). At that point, breast milk was not even an option as it didn’t have enough calories to give her the target weight.

I would feed her every two hours round the clock with a syringe with the hope that even if she throws up, something will remain. We carried on like this and she managed to gain 1kg! The doctors were amazed and eventually approved the surgery because she was getting too weak.

How has her medical condition affected your family

Since the surgery, we returned Home(Nigeria) to continue with our life, at 8months we started physiotherapy to assist her to walk which she didn’t accomplish till she was 21months. At 15 months she started speech therapy to help with her speech, which we are still working on till date.

Omorinre is the sunshine in the family, she has taught all of us both nuclear and extended family to be patient, vigilant, forgiving, firm and supportive.

People living with Down syndrome are said to be the happiest people in the world and Omorinre is one sure happy child whose smile can melt the toughest heart – hence the need to be firm.

She loves her brother and her brother loves her so much but she doesn’t hesitate to shove him if she feels he is taking her for granted. Omo( as she fondly calls herself) is very stubborn and has the tendency to do only things she wants to do hence our many fights.

How has it been raising Omo over the years?

Raising her has come with its ups and downs. This is because, in Nigeria, special needs services don’t come cheap and even when money is not the issue, you may not be getting value for your money.

Child care has been a huge problem as I am a working mum and I need to rely on others to help me with her. I once employed a nanny who left and told her agent that the reason she left was because I had a special needs child (I refuse to use the mean words she used), the fact that Omo can’t tell us how she was treated – because of her limited speech is always at the back of my mind.

Omo attends a regular school and I constantly worry if she is doing okay academically and remind myself daily not to compare her to other children of her age. The fear of not doing enough and failing her is constantly on my mind, hence I strive daily thinking of alternative areas to help her and develop her.

Being a working mum, I have learnt to surround myself with support from family on both mine and her dad’s side of the family, and I think I must use this medium to say thank you to both families , everyone is always ready to chip in when the help is required, sometimes her 84 years old granddad will take her to school or my mum is ever ready to take her for the weekend if I have an engagement. Because of the solid support system I have I was able to leave her for over three months with her Dad and our families when I went to have her brother.

Raising her is like raising any other child, every parent pays attention to their child’s needs and raising a child with down syndrome is not any different. There must however be a conscious effort in ensuring that both kids are treated the same. I try not to give Omo any special treatment, I always encourage her to do more in attaining goals. Every goal achieved is well celebrated in my home.

Advice for families struggling with the same or similar situation.

My humble advice to family with unique kids without sounding too spiritual, is first be happy, thanking God always for the opportunity to serve another human being and asking for his support throughout the journey,.

Secondly, surround yourself with good support i.e. family, therapist, child care, school, friends etc. Lastly never be too ashamed to ask for help. Whenever you need it, ask for it.

If you require help and more information about down syndrome, you can approach the following agencies which I have used:

  1. Down Syndrome Association of Nigeria 1, Alafara Oje Crescent Alamutu Estate, Iju, Fagba, Lagos. Formerly: 43, Adegoke Street, Off Masha, Surulere, they are opened Monday-Friday, 8am4pm   and operate a live in service somewhere in Fagba in Lagos State. Telephone number +234-803-228-5545 Email:info@downsyndrome-ng.org  (This Association was founded by Mrs. Rose Mordi a Down Syndrome parent).
  2. Moyinoluwa Rainbow Foundation. House 4, A close, 112 Road, Off 1st Avenue, Festac Town, Lagos Phone: +234 9084417979 Mobile: +234 8088798551 Email: info@moyinrainbowfoundation.com. (This Foundation was founded by a Down Syndrome parent Adetola Makinde mother of Moyinoluwa a child born with Unique extra chromosome).

What are some of the challenges of raising children with special needs in Nigeria

In Nigeria, there is a general lack of awareness about Down syndrome. I remember when I was school shopping for my daughter and of course the 1st thing I did then was to inform them of her unique abilities. The head of school honestly was clueless and I had to educate her and give her some websites to read up on but I wasn’t upset because I only had a vague idea before I gave birth to my daughter myself.

We also lack early intervention caregivers. Children with down Syndrome require early intervention from different caregivers for example speech, occupational therapist, physiotherapist, behavioural to say a few. These services are not readily available in Nigeria and when you get them they are so expensive that most people can’t afford them. Sometimes, you are not even sure of the person’s qualification.

We also have a non-existence Health care service. Most children with Down syndrome require surgery which has to be done outside Nigeria. In most cases, children are not even diagnosed until almost 6months after birth.

Another heart ripping factor is that yearly checks ought to be conducted on the children eg thyroid check, eye check, and for kids who had heart surgery like mine post-surgery checks and general wellbeing! I recall when my daughter had a bad case of constipation and we had tried everything possible and seen loads of Doctors without a solution! I was almost losing my mind till a friend recommended a doctor who works with special kids before the issue was solved.

We also lack government support. There are no special schools, no inclusive learning. We lack trained social workers and carers to assist parents who just need a break. All these factors make it difficult for most families, especially struggling families to raise children with special needs in Nigeria.

Despite all these challenges, parents should please try to understand and accept their beautiful child/ren. Down syndrome is what it is, and it doesn’t limit the child in any way! The child will become what God, has destined the child to be in his or her own time.

They shouldn’t be compared with their peers, allow them to blossom in their own time! The more you invest in them, the more you get from them. Take them out, let them mix with other kids, have discussions with them (I do this with omorinre all the time).

Bisi

May I use this opportunity to appreciate parents who are raising children with additional needs in Nigeria and other countries that have previously hidden their Special children.

Every child deserves to be seen just as much as they deserve to be heard. Kudos to parents who are defying the norm, and encouraging their children to mix with others and giving them a chance to make a difference in this world. Every day, we see and read about unique people with special needs impacting their world, be it as models, inspirational speakers and so much more.

Remember to be kind and supportive of families raising children with special needs around you.

Aunty Lulu.

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Tomi Tanas
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Tomi Tanas

My Darling Bisi, thanks for sharing. Your strength and openness is an inspiration. God bless and keep you, Teti and your family.

Oluwatoyin Egbinola
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Oluwatoyin Egbinola

May Tetisimi continue to grow under the shadow of the Almighty and may she be a blessing to her generation….Kudos Bisi….Kudos Yemi

Ese Oderhohwo
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Ese Oderhohwo

Bisi you are a strong, caring and loving mother. I love your courage and strength. God will continue to give your family all it takes to make Omo proud

Ola
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Ola

What a strong woman you are Bisi, I’m a mum myself and I feel incredibly stressed sometimes, Please be assured you’re doing a great job especially with how extra difficult it is raising a special needs child in Nigeria! God bless you and your beautiful family.

IJeoma Fyne
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IJeoma Fyne

Wow. This is so inspiring. Am a mother to a pretty girl with an ex chromosome and can relate to this story very well. Mummy Omo, you are doing great. More strength and wisdom to give our special one the best.