Oyinkan and Tunde Kalejaiye, a young couple living in the UK agreed to share the story of their beautiful boys, who were born deaf, with us. We sincerely hope that you are inspired by their story.
My husband, Tunde and I met in the UK in 2000 and married in 2003. We had our first son, Oluwaseni in 2005 – his pregnancy and birth were pleasant and uneventful. We decided to try again for another child in 2007, preferably a girl…so, we were totally shocked when we found out I was pregnant with identical twin boys…the twins, Oluwatoni and Oluwatosin were born in 2008.
When twins were born The twins’ pregnancy was a difficult one and they had to be delivered early because they developed a condition known as TTTS (Twin to Twin Transfusion Syndrome). The delivery was also difficult because I collapsed during the process, which led to an emergency caesarean section as the boys were been starved of oxygen. Oluwatoni was brought out first, he was struggling but breathing; Oluwatosin came out nearly blue, if not blue, he needed support quite quickly to help him breathe. Amazingly, the boys spent less than 24 hours in special baby care unit; they became stronger and stronger; their breathing seemingly improving with every hour that passed. They were fine to go home within 5 days, although now in hindsight, I wish we had stayed longer…may be things would have been picked up quicker and may be outcomes different.
First sign something was not quite right Pretty much, after we got home I noticed there was something not quite right. Initially, it was their breathing, it was very noisy and not quite right; especially Oluwatoni, it was as if every breath was a struggle. Then, I noticed they didn’t react to any noise or anything in particular but then I was very ill after the birth, so I felt I was a bit exhausted and may be things will become clearer as I got better and they got older. I tried to remain positive for weeks, praying and believing that the signs I was seeing would come to nothing and that the symptoms I was seeing were as a result of my ‘tired mind ‘playing tricks’ on me.
The diagnosis Within 6 to 8 weeks of their birth we received various diagnosis – that they suffered from a condition called ‘Laryngomalacia’; Oluwatoni worse than Oluwatosin and that they both suffered from bad gastric reflux – which meant breathing, feeding, digesting was just one huge challenge. Both suffered from really bad and recurrent chest infections which over the years led to several stays in hospital. The greatest shock of all came when we were told after several tests had been carried out on both boys, that our twin sons were not only deaf but ‘profoundly deaf’…I believe at that moment, life has we knew it, changed… I mean I remember trying desperately to hold on to ‘hope’ but could see it fading away. There were many questions…too many questions – on the one hand, we were literally fighting for their lives with all the breathing problems etc… and the other hand, if they lived, what quality of life would they have…being profoundly deaf.
Mother’s first reaction To be honest, I already knew something wasn’t quite right…mother’s instinct, I guess. A formal diagnosis however is different; it brings about a different feeling…because now your worst fears have been confirmed. I was numb for a couple days…probably in denial…wishing and praying it all away. I prayed and prayed …I mean I couldn’t believe it was happening to me, then I was deeply heartbroken as I watched my ‘happy ever after’ life seemingly disappear, I cried and was very angry; then I pitied myself…felt so sorry for myself, for the challenging journey ahead of me and I felt so powerless and out of control at the time…it was horrible.
Really challenging moments The last four years has been one huge challenge – but the first two years were the worst because they were very ill as well as very deaf. We had to deal with the illnesses and wait till they were better enough to deal with the deafness properly. The waiting was hard because as a parent you want to know that your children will be fine. I mean in those 2 years, we had at least 2 hospital appointments every week, apart from professionals who came to see them at home and days in hospital because one of them was ill. It was physically and emotionally draining, I felt like our entire lives had been invaded and no longer ours. Also, I felt enormous guilt when I thought about our first son, Oluwaseni, who was lost in all of this drama…his lovely home life had been invaded and everything changed. Those first two years of learning to accept our ‘new life’ and adjusting to the changes that come along with it were most challenging for me as a Mum and a human being.
How I hung in there I remember in the early days, praying earnestly for strength as I honestly could not comprehend how I was going to go through life normally with the enormity of the challenge before me as Mum and us as a family…I just felt so distraught, weak and powerless. But then my prayers were answered, with the gradual acceptance of my situation, came strength – day to day strength to physically deal with daily challenges; strength to pull myself together and look for information and accept support (We had a lovely teacher of the deaf, I got a lot of information and support from the National Deaf Children’s Society UK (NDCS), the Cochlear Implant Team at Great Ormond Street Hospital, various doctors and specialists, especially their paediatrician). God sent helpers our way – he gave us the wisdom to recognise them and the grace to accept help and support. Our family and friends also tried their best…during challenges, you know who your true friends are and those who really care and in our case, we are thankful that those friends and family that remained after reality hit; really and deeply cared. Most importantly, I have to say that I try to be strong and pull myself together for my boys most of all…all 3 of them, as I believe that they stand a better chance in life, if I stay strong and believe in them. It will do them no favours, if my husband or I give up on them or if we are not their biggest fans and believe that despite their challenges, they are great men and will accomplish great things. We have to believe that and hold on to that…and it does keep us going as we have a vision and goals.
Stints at the hospital Oluwatoni was in and out of hospital a lot more than Oluwatosin – they both would fall ill with a chest infection or something, but Toni would just get worse and worse, and would end up in hospital. Also, they have had around 5 operations between them and they had to stay in hospital, again Oluwatoni always stayed longer than his brother. I have to say though, that our Toni is one little fighter and we thank God for him as many times we were so afraid he wouldn’t make it but he always bounces back, choosing and holding on to life.
Financial help I am thankful that Oluwatoni and Oluwatosin were born in the UK where support is available. This does not mean that it has been easy to get the support needed as there are many things that we have had to ‘fight for’ to get – but that very good support and assistance is available and an option. Both boys are taken care of and monitored by specialist teams both locally in our part of the UK and also by Great Ormond Street Hospital in London. We are supported by the National Deaf Children’s Society (NDCS) – a UK charity that supports families raising deaf children.
Toni and Tosin TODAY Toni and Tosin today are 4 year old happy boys – their health is improving. They both suffer from asthma and allergies, which they are on medication for but are managing pretty well. At the age 2, they had major operations, following a couple of minor ones and were both bilaterally implanted with cochlear implants. Cochlear implants do not cure deafness but allows both boys to wear sound processors during daytime which give them a ‘sensation of hearing’ as the implants bypasses the ears and works directly with the brain. They see the Cochlear Implant Team at Great Ormond Street Hospital regularly. They also got prescribed glasses due to problems with their eye sight – children who have sensori-neural profound hearing loss usually develop eye sight problems as well. Both boys have been wearing their sound processors for 2 years now and their speech, communication and understanding of the world is improving gradually everyday. They wear their glasses well and there have been noticeable improvements in them overall. Toni and Tosin both have a Statement of Special Educational Needs and our family recently moved so they can attend an excellent Specialist School for the Deaf. This school offers them the continual support they need as they have access to learning and understanding language through BSL, English language, gestures and lip reading; regular speech therapy; help with social interaction and play; communication; careful supervision in their daily life; help with managing processors and glasses and the curriculum in way they would understand. They love their school and are doing well.
Their hobbies and distinguishing characteristics Toni and Tosin are very similar and yet very different – they swap personalities a lot, so one month Toni is the calm and passive twin and the next month he is the active and energetic twin. It used to be quite confusing, but we are used to it now! Both boys love each other to bits and they are very into each other – it’s so lovely to watch…those are the times I am ‘grateful’ they have quite similar challenges, because they will always be able to support each other in a way no other person can and that is a real blessing – They will never walk alone. Both boys love cars, bicycles, buses, trucks, fire engines etc… anything that moves actually… including insects! They have very recently discovered watching TV – the deafness and eyesight problems made it difficult before but now at the age 4, they are now starting to show an interest in television and what it has to offer. They also love their ipads – they love watching videos on youtube and they can watch the same videos for hours on end!
My words of encouragement to you if you’re faced with a challenge like this By all means be sad, disappointed, angry, frustrated, etc…but pull your yourself together as quickly as you can – as a parent, you do not honestly have the luxury of staying ‘down in the dumps’ for too long, your child/children need you to be strong and positive despite any challenge. There is the temptation to isolate yourself and/or your child/children or remain in denial – again try and fight this with every muscle in your body and mind, pray for strength…a lot of strength, as you will need it. Accept and embrace your situation – this is your life now; even if you are praying and believing for a change, there are things that you need to do that you can’t do if you’re stuck in denial. One of the greatest things you can do for yourself and your child/children when faced with challenges is to get educated on the issue/s, get information, knowledge, speak to relevant people…it is liberating. In your own little uninformed world you feel hopeless and limited but with the right information and support you feel empowered – able to make informed decisions and it opens your limited mind to huge possibilities available to explore. You become hopeful, able to dream and live life with a vision /goal. The birth of the twins changed our lives forever, it has been a difficult journey and it isn’t over yet; but nowadays, with God’s strength, the experience and knowledge we have gained through this challenge, we truly believe that Oluwatoni and Oluwatosin will be fine and can accomplish anything.
Thank you for letting me share my story with you all. I hope you have been blessed and inspired by our story and our miracles.