this week my aim has been to bring attention to the disabkled people in the world who may be suffering from one form of disability to another
below is anne's recent story about her daughter and haow she has coped with he daugters diasability
More than six years ago, Anne was involved in a relationship believing it would lead to marriage. She, however, ended up pregnant, alone and with a broken heart to mend. Anne, however, amassed her courage and carried on.
"It was scaring, but that my parents were supportive was very encouraging," she says. In March 2004 she went into labour and a very long one at that. With 21 hours of travailing and no signs of the baby, her doctor swiftly advised a C-section.
But alas! Her baby Angel was born with a defect. The doctors diagnosed the condition as hydrocephalus or having "water in the brain." This is a situation, which causes a baby’s head to swell abnormally and eventually results in stunted growth.
Babies born thus suffer from an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles or cavities of the brain. This may cause increased pressure inside the skull and progressive enlargement of the head, convulsions and mental disability. The experience can be very confusing to a parent as Ngugi confesses.
"When I held Angel in my arms, I refused to acknowledge that she had a problem and kept hoping that the swelling would subside and that she would be normal like any other baby within the shortest time," she says. "In the days following, I would massage her head with Vaseline for two hours daily, but her head kept swelling and the veins were protruding. It was then that I realised I needed to seek medical help."
Angel had her first operation when she was only three weeks old. Doctors fitted plastic medical gadgets called shunts in her head that went right through to the stomach so that they would direct the flow of fluids.
However, four months after the operation, Angel began to experience hot spells, her head was still big and she could not smile as yet.
"I could see she was very uncomfortable but not knowing what else to do, I only watched her helplessly. It was heartbreaking. How was I to continue going to work as if everything was okay yet I was dying inside?" In the same year while on assignment at Kijabe’s Bethany children’s Hospital for the crippled, she met a Caucasian doctor who advised her to take the child for an operation to remove the shunts.
"He was heaven sent and he directed me to a hospital in Uganda — Cure International Hospital — that specialised in the condition," she says. "I researched on the hospital and contacted them online. I met a Dr Charles Waff and decided to go for the operation. I was ready to do anything for Angel. However, I did not know how I would get leave from duty or where the money for the operation would come from. All I knew was that my little Angel needed help," she recalls.
Armed with Sh25,000 for a down payment and a bus ticket, Anne and baby Angel travelled to Uganda on August 26, 2004.
"At the hospital I met several women from all over Africa who had babies with a similar condition. I was the youngest; most of the women were married and had endured so much. For some, their husbands had rejected them and their babies; others had been ostracised by their communities as ‘they were cursed’. But in those two weeks, we mothers bonded — we shared our experiences and encouraged one another. It strengthened me knowing that I was not alone in this."
With stretched facilities, the stay at the hospital was not rosy but who cares when it is for your child’s sake. So after two weeks of treatment, the hour of reckoning finally dawned. The operation was meant to last six hours. "When the other mothers were called for their babies and no one was calling me, I feared the worst. I even began to see a baby casket before me; I left for the hospital garden and cried my heart out to God. Twelve hours later I was finally called in and my heart burst into joy when I saw Angel. She had not fully recovered from anaesthesia but for the first time ever she smiled — you have no idea what that made me feel".
Anne believes that when a child realises that you love her or him and are not ashamed of her or him then they will blossom beautifully. At times she felt embarrassed to take Angel out because other children would laugh at her or people would stare but she realised that children are innocent and the older people are just ignorant. She openly goes out with her daughter. She finally understood that her daughter deserved to be accepted the way she was and never to be hidden like she was something to be ashamed of.
"To say that it is easy to raise a special child is a huge lie but as a parent it is our duty to love our children unconditionally. Angel is a gift from God, I do not think there are many children for whom prayers have been said more than Angel. God has been faithful; today she is five and at Loreto Convent School. The doctors said she would not grow but look at her hands and legs they have grown, she is a very happy child and the teachers say that she is confident, very active and social," says Ngugi.
Anne and her husband Simon Ogolla, a businessman in the entertainment industry — a man she had been friends with for quite a while but began dating in 2007, married last year in October. They were blessed with a child — John Mark, on April 2, the same year.
"My husband loves Angel so much, they are best friends, watching them play together brings tears to my heart. As parents we talk to her about her condition and constantly tell her that she is beautiful. She knows that her head is bigger than normal and we do not pretend that it is not. We want her to know that she is just as beautiful as every other child," says Ngugi.
Her word of caution to parents is that they need to understand that every child is a gift and should be treated so and that God cannot give you more than you can handle.
Word from the expertJane Olago, a counselling psychologist at Nairobi Women’s Hospital advises that when faced with a similar situation, parents need to come to terms with it as soon as possible. And that although some people might require counselling, denial can have detrimental effects on the child.
"Instead of searching for a way to ‘cure’ your child, accepting him or her for who they are and finding ways to help them realise their full potential would work wonders. If a child realises that you are embarrassed about them or you do not accept them the way they are, then it will affect them emotionally all through their lives. Where necessary, the child should also go for counselling," she says.
She gives tips on how parents need to take care of a special child:
Do not take a special child as a "cross you must bear," but simply accept them.
It is important that parents do as much research about the condition so that they learn about the diet and different treatments available. "Become as educated as you can about your child’s condition and when others reach out to you to help, accept their help willingly."
Parents must remember to take care of themselves as well. Taking care of a special needs child can be draining, challenging, full of fear and uncertainty, not to mention incredibly difficult. There are physical challenges of your child to consider, as well as his or her emotional needs, and a great many medical concerns to think about. Plus, there is the emotional toll that caring for a seriously ill child will take on yourself and other family members.
Children often fear that they did something to cause the condition but parents should reassure them that he or she is in no way responsible for it.
