Carers Stories
LUKE'S STORY
PREGNANCY
My pregnancy with Luke was uneventful, though at six to seven months I developed high blood pressure and he was in breech position. It was then that my doctor recommended that I have a caesarian and that we would not wait till the full term but instead have it at 36 wks. I was admitted on the 10th delivery so he decided to induce the labor.On the 11th no progress he decided to perform the caesarian the following day. Before he left he noticed that the fetal heartbeat had not been recorded, upon more enquireshe found out they had lost the fetal heartbeat from noon that day. He checked of March and the Doctor thought I should try natural of March, in the evening at around 10.30pm, after much waiting and and could still not get the baby’s heartbeat. He decided to perform an emergency caesarian but by that time my blood pressure had shot up and they had to wait for it to stabilize before they could perform the operation.At 12.30am on the 12th weighing 3.3kgs. on March 2005, I delivered a beautiful bouncing baby boy
MEDICAL HISTORY
Everything seemed normal until he was six months when he delayed in sitting and would need to have support to keep him in that position. When I approached his pediatrician he assured me it was normal for boys and especially if he is the only child in the house, to delay. As time went by I got more concerned that he did not attempt to crawl nor hold on to things to move around. By the time he was a year old he was still not able to lift himself into standing position nor was he able to stand without support.Following my constant pressure on the doctor he decided to send us for a Rickets and Thyroid test at Nairobi Hospital. The results were negative but the doctor who attended to us, Dr. Nyilok, after hearing our case decided to send him for a C.T. scan. Her main concern was whether he had Hydrocephalus. The results showed he had some sort of brain injury so she sent us for an MRI to clearly see what the problem was.The MRI was not as clear as she would have hoped but she concluded he had Delayed Milestones/ Communicating Hydrocephalus. We were then referred to a pediatric neurologist, Dr. Oyatsi, who after going through my son’s medical records and checking him he concluded that my son had Cerebral Palsy and referred us back to Nairobi Hospital for Physiotherapy and Occupational Therapy.My son had to have these therapy sessions six days a week, but the therapists were not in agreement with Dr. Oyatsi’s diagnosis of C.P. but all I was interested in was in my son getting better so we continued with the therapies. When we went to see his pediatrician for a cold he enquired about the progress on my son, on giving him the diagnosis of the Neurologist he was totally against it and suggested that we see an Autism specialist because he suspected that was the problem.When we went to see the Autism specialist, she was impressed at the eye contact my son maintained and after further tests said he was not Autistic but would need intensive therapy and we should keep an eye on him for any changes. We started going to her school for therapy once a week and the rest of the week at Nairobi Hospital.By then my son was one and a half years, He had not developed any speech so his occupational therapist suggested we see a Speech Therapist. It was here that she, the speech therapist, suggested I join a support group that had meetings once a month and were addressed by different professionals on how to cope and manage with the different needs our children have. This is organized by Special Education Professionals (SEP). The speech therapist advised us to have some tests done (hearing and Eye sight). We took him to be tested for hearing at Kenyatta Hospital and they said he had partial deafness in the left ear and told us to get a hearing aid as soon as possible. Not completely convinced we went for a second opinion at Upper Hill Medical Center and here they found his hearing was normal. Taking this report back to the Speech Therapists she called the Audiologist and faxed her a copy of the report. The Audiologist from Kenyatta requested we go back for her to check again, this time the diagnosis was he had normal hearing.We took him for an eye check-up at Kikuyu Eye clinic and the Ophthalmologist found his sight was good though he has a slight squint in the left eye and we were to have him checked after every six months. One of the professionals at SEP suggested that I consult an occupational therapist, Karolien Tutts, who asked for the reports from the other therapists and decided to concentrate on Sensory Integration.On the 10th walk though he didn’t have balance and anything small could trip him over.OnSeptember 2006 my son took his first steps towards me. He could We were sent back to Dr. Oyatsi the Neurologist and he was happy with the results and he wrote a report that my son had out grown the Cerebral Palsy and he sent us to have an MRI done.This time I was financially drained and could not afford to have the scan done.It was suggested to me by the Autism specialist that it would help my son if I enrolled him in school for social interaction. She runs a Special school but thought it would be better for my son to be in an integrated school.I searched for a long time a school that would accept my son with his needs and finally found Arcadia Nursery and Day Care center. He started going to school on the 9th encouraging. They work together with his therapist to try and meet his needs by writing reports on his progress and following the therapist’s instructions on how to work with him. of January 2007. The Headmistress was very supportive and He went through the first term with school in the morning and therapy sessions in the afternoon. The second term didn’t go too well, his health deteriorated. He got throat infections, Chest infections, Ear infections, he became anemic¸ he was constantly on medications especially antibiotics. He missed a lot of school and regressed in his achievements in therapy.
One of his therapist, Karolien Tutts, concerned about his deteriorating health advised us that we should take him to have a proper diagnosis made and for his general health to be checked. Upon enquiries we were told our best option was to either have it in the USA, UK or South Africa.Financially things were not good and by third term I had to stop taking him to school and stop all his therapy sessions.I had still not gotten any answers as to what my son’s condition is and so with determination not to give up I approached some friends who told me about The Autism Society of Kenya. I took him for assessment and they said he had all the signs of having Autism but would put off the diagnosis till he’s much older. They recommended that we change his diet and have intensive therapy. I put my son on a special diet (Gluten free) and started therapy which was twice a week. Still determined to get answers to my many questions I decided to look for a sponsor to help pay for his evaluation. By some miracle I got a parent who has a child who is autistic who understood my situation and he decided to pay for my son’s evaluation in the states since that is where he took his soon and eventually moved his family there. We got appointments and filled all the forms and met all the requirements the doctors needed. Due to the post election violence and unavoidable circumstances we missed the appointments and hence was difficult to reschedule them. We opted to try other options and managed to secure appointments in South Africa.On the 19th doctor we were to see in the U.S. and the results showed it was abnormal but the doctor did not elaborate further (since we were referred by another doctor) but instead told us to seek immediate medical attention to address the problem. On December 2007 we had an EEG done through the request of a We left for South Africa on the 6th on the 7th of April and had the first Evaluation done of April where the diagnosis was that my son was Autistic caused due to trauma at birth. The doctor further requested that we have another MRI done to see if there are any changes in his brain development and to have a chromosomal tests done to eliminate any gene as a cause. They were shocked that no treatment had been initiated given the results of the EEG and she prescribed medication, which I was to find out what is readily available in Kenya and start treatment immediately.The second appointment we had was a group of different Professionals who observed my son and concluded he was Severely Autistic and Mentally retarded and would require a care giver for the rest of his life. This truly broke my heart and for the first time I felt I had come to the end of the road.After much thought I decided not to give up and use the time God has given me to try and give my son the best I can through advocating and sourcing for funds to enable him to go back to school and have intensive therapy.
PRESENT SITUATION
Luke has not yet developed speech and is still not that stable, he can easily stumble on new grounds.He has no self-help skills e.g. cannot hold a cup or bottle or spoon to feed himself. We encourage him and assist him..not giving up on him! He has self-stimulating behavior e.g. rocking himself, moving his head from side to side while lying on his back.He’s recognizes people close to him but becomes fussy and restless when in the presence of strangers and can act out by crying.He has no creative play i.e. he has no interest in toys, when he was young he had a preference to a butterfly shaped rattle that he loved.He’s comfortable playing alone, but enjoys it when I join him on the mat when I come home from work. I get to steal a hug now and again an if I’m lucky a kiss..In company of other children he’s aware of them but pays no special interest in them.Recently we started making him hold stress balls to avoid him from hitting his head…normally we have to hand the ball to him. Due to lack of balance he is unable to bend as he would fall over..last night his stress ball fell, he looked at it, stood from the chair walked to where the ball was bent over, picked it up and went back to where he was seated. I was overwhelmed at achieving this milestone..I believe early intervention is crucial and intensive therapy i.e. speech therapy,
occupational therapy, physiotherapy, language therapy, play and behavioral therapy helps progress as they grow.
All we have is God and each other. I thank God every moment I can for the
blessing of Luke!
MY PERSONAL LIFE
emotionally long before then. I lost my Dad and mum. All I have is my little Lucky Luke and I am all he has in this world! One thing I have learnt through my journey is God never leaves you…He is the constant in your life!
Charity R. Mbogho
(Luke’s Mother)
CONTACTS
Email Address: chaxke@yahoo.com
P.O. Box: 74056-00200 Nairobi
Tel. No. : 0721 966 466