How risky surgery enabled me walk again— Ayo Adewemimo, 17-year-old sickle cell patient

By Sola Ogundipe Ayo Adewemimo is not your regular kind of teenager. He is not the typical 17-year-old adolescent that relishes boyish acts such as playing hooky from school or indulging in a three-a-side football game on a cold, wet afternoon. And perish any thought of hoping to observe Ayo having the time of his life at an all-night party or sneaking out for a joyride in the family car. Young Ayo just isn’t the outgoing type. But that is not to say he doesn’t measure up to his contemporaries. On the contrary, Ayo’s intelligence belies his age. Not only is his academic proficiency well chronicled at Bridge House College, Dolphin Estate, Lagos, his courageous and determined outlook to life also stands him out like a beacon in a dark alley. Unpretentiously, Ayo announces to whoever cares to listen that he is living with sickle cell disease. “I am a sickle cell patient and, because of that, I had a dislocation on my right hip. And I travelled to India for treatment at Apollo Hospital.” Diagnosed at the age of two, Ayo, the first of three children – all boys – born to Hakeem and Gbolabo Adewemimo, had the best care imaginable and coped very well with the challenges of being a sickle cell patient. At home, obviously, there was a lot of support; Ayo is comfortable but not spoilt. “I wasn’t treated in any special way. I was like everyone else. I could move around and help myself the little way I could,” he remarked. Outside the home, Ayo had friends that assisted in making him feel better. “In school, I had a friend, Phillip. He told me that I looked very handsome and I shouldn’t worry because of my leg or if others wouldn’t talk to me, I should feel free to do what I wanted.” ‘God, why me?’ Hakeem, Ayo’s father, admitted that as a sickle cell patient, Ayo suffered a hip dislocation and had to go to India to treat that complication and not the sickle cell disease itself. Regretting his son’s predicament, Hakeem affirmed that the blame was not on anybody, but himself. “Realistically, I blame myself more because I am the donor but, at the same time, I still ask God, Why? Why Me? We all make mistakes but God has rubbed this one too much on me. We have people who are lucky not to have a sickle cell child knowing that the chances of having SS from an AS/AS couple is ¼ (AA, AS, AS, and SS). Why don’t we have the other three and why this one SS? And why must he be the first? I wouldn’t say God was not on my side, whereas luck was just not on my own side,” he stated. Before taking the decision to go to Apollo Hospital, there were some attempts to put a stop to the problem in Nigeria. Adewemimo...after the surgery Adewemimo…after the surgery “At least, we must thank God that we are comfortable. From the day we knew he was SS, I told God that in as much as I have the money, I will keep taking care of him. And that we’ve been doing. Any small thing, it’s straight to hospital and even though the hospital charges so much, we try as much as possible to pay the bills. Likewise, sometimes, I feel so bad that I say I can’t keep spending all my money on him and that I have his younger ones to also cater for and quickly I feel that I have had an undertaking with God that I will keep taking care of him. “We have a good hospital at Opebi, Lagos where we normally go once he has an issue. Although it is time and money consuming, emotionally draining, when it developed into complication (hip dislocation), I spoke to a doctor and he said they could do it at the National Orthopaedic Hospital, Igbobi. I wasn’t too comfortable; I wanted something good and something I could be very sure of the result. I spoke to some people, some said United States, Europe, India but the one that took me to India was when I went on the internet to look for surgeons for hip replacement. I came across Dr. Raju Vaishya of Indraprastha Apollo Hospital, New Delhi.” Vaishya was trained in the United Kingdom and is a pioneer of the process involving Total Hip Replacement, THR. Ayo’s parents felt he must be really good at it and that was how they got in contact with Apollo Hospital and they were assured they could do it. At the hospital, the doctors went through Ayo’s medical history which they obtained along with the x-ray, but insisted he had to be of age before it could be done in order to ensure the success. So Ayo had to wait to come of age before going ahead with the procedure. “Financially, God provide but the emotional part is the serious issue. At his age, I expect him to have started driving but look at him because of his condition, he can’t. He ought to have been doing things that other boys of his age could have done.” Hakeem said the fact that the doctors had not handled a case of such before, made no difference to his decision. “I wanted the thing done, it wouldn’t have mattered. Just like the case of Ebola now, if I have Ebola now and they said they have experimental drugs, I will ask them to do it and let’s see because I have nothing to lose.” A mother’s pain On her part, Gbolabo, Ayo’s mother, painfully recounted Ayo’s travails. “There were times people were a bit mean and he complained of them not wanting to associate with him because he was limping and using crutches and it made him feel they were not on the same level. They didn’t want to talk to him and he couldn’t take part in sports (though was able to make cricket in a little way) which was a major issue and really it was a disadvantage on his own part,” she said. Ayo is the first of three children (all boys) but the only one with sickle cell, according to the mother. ”It’s really difficult to answer how I was able to pull through with him at the height of this challenge. Of course, it was challenging and frustrating if there’s any other word to best describe the situation”, she said. “We are all human and sometimes you feel like why? There were times when he had an exam to write and needed to study. He wasn’t able to do the routine things easily and needed to go the extra mile to do those things and, even when he did, before the exam, he fell sick and this was an exam you didn’t have the power to cancel. “Sometimes you want to be understanding about what he is feeling and let him realise this was an exam he couldn’t retake. You want understand how he’s feeling and, at same time, you want to feel like you need to get over this thing and have this thing done. It really made me feel helpless and all I could was to leave it in the hand of God. “I personally know it was stressful for him. I remember when he got out of hospital, there was a time he looked scary and like a ghost. All of a sudden, he lost weight and, due to his peculiar SS case, apart from losing blood, he became so white, so sickly and moreover his was the first case of his kind to have undergone the procedure.” Landmark surgery In Nigeria, doctors had been apprehensive in performing total hip replacement because the patient was very young. But the doctors at Apollo Hospital took the risk. The hospital discovered that due to the sickle cell disease, Ayo had developed Avascular Necrosis, AVN, of the femoral head of both hips, with secondary arthritis in the right hip. Neither Hakeem nor Gbolabo could bear to be separated from their son. So in June 2014, they both accompanied him to the Apollo Hospitals in India for the procedure. On July 15, Vaishya, a professor of orthopaedics who had examined the patient and approved total hip replacement surgery, carried out the procedure. Leading the surgery team, Vaishya, observed: “Total hip replacement was done using uncemented joint components with ceramic bearings and large diameter head. A special care was taken to prevent sickle cell crisis during peri-operative period, by providing adequate hydration and oxygenation to the patient. The intraoperative and postoperative period was uneventful.” Moving ahead Ayo is currently undergoing physiotherapy and mental support. He has been given six months after which he can walk unaided. He’s taking his drugs at regular intervals and doesn’t need to go back to India or require any specialist. Several weeks after his landmark surgery, Ayo proudly told Sunday Vanguard that he was moving ahead in life. “I’m about gaining admission into the university. I wish to study IT security. In the world today, there are so many cyber theories just like Edward Snowden and Microsoft which went around the world but could not recruit enough IT specialists. So, I intend to make myself relevant.” Following the procedure in Apollo, he confirmed that he could make some movement which he was unable to do before. “Just two weeks after the procedure, I could raise my leg to a certain angle from the foot to the knee and up to the hips. It was much better and I do exercises with much strength. Emotionally, I thank God this has been taken care of and, finally, maybe I will be accepted more by my peers because, before the surgery, I was limping and some kids will call me “Fela” (in reference to the late Afrobeat King Fela Anikulapo Kuti after his encounter with soldiers who threw him out of his burning residence in the late 1970s)”, he stated. “This was pre-surgical occurrence and it made me miss classes and lessons at school. I wasn’t coping well in school and this led to the dislocation after which I started limping and required to start using crutches. I felt a little bit unsure while in school and among my friends. “I remember at a time, I was on crutches but later stopped. During that time, some friends got my food for me and if I wasn’t in school, they helped me copy lesson notes and later explained the topics to me. The school authority was aware of my situation and I was a day student.” Ayo, an ardent cricket player, said he copes by just swinging the ball. “I couldn’t run fast and sometimes it’s always like ‘Ayo run faster, faster! You can do this”. All I could get was one point with the bat, I couldn’t run to back and forth and sometimes I hit the ball so hard and would probably get a six.” Ayo hopes to continue his studies at the University of Dubai. The preoperative pain of hip arthritis is gone after the surgery and now Ayo has started taking his first pain free steps after a long time. Ayo is, confident and raring to take life head on without any pain and disability in the hip. Lessons Ayo’s travails were just an eye opener, his mother remaked. “All my life that I have known about sickle cell, I never knew it causes hip/shoulder/elbow dislocation and, am sure there are people who have that but are not privileged to be aware of a solution or probably they don’t have the financial means to do it. If not because he (father) went on the internet and probably because we are more enlightened to know and ask doctors, there are people who don’t have the opportunity that he (Ayo) has and their parents will just leave them crippled or put on the wheel chair not knowing there is even hope or there is something they can do about it. That’s the major lesson I learnt because I never knew until it happened to him when he was in JSS 1 going to JSS2 and I asked myself, ‘which one is this ‘again?’ The usual thing I knew was crisis and malaria which are usually prone to infection.” In another four months, Ayo should be able to throw away the crutches and walk unaided as he prepares for life in the university. - See more at: http://www.vanguardngr.com/2014/09/risky-surgery-enabled-walk-ayo-adewemimo-17-year-old-sickle-cell-patient/#sthash.BsnhO84p.dpuf