What do you say to your three-year old daughter lying on her sick bed in hospital, trying hard to grapple with excruciating pain with some needles sticking in the back of her hand when she gazes at you and with her teary eyes and with a soft voice says ‘Daddy, my hand is breaking’?
Daddy, my hand is breaking.”
A very difficult and tough situation indeed! Those who’ve been there can relate. That was our lot some 27 years ago when Vanessa had her first crisis. It got us thinking whether we had taken the right decision. A sense of guilt immediately engulfed my whole being and so many questions just raced through my mind.
In that rather somber and frustrating mood, I took a decision – I will not allow this to happen to any other child of mine. I was not going to take any chances – Vanessa was going to be an only child! However, man proposes, but God disposes – Vanessa has a younger brother, Kobena, whose genotype is AS and a very active sportsman. Indeed, our ways and thoughts are completely different from that of God.
Kobena’s entrance into this world brought a lot of excitement and some mixed feelings with regard to what his sickling status was. The timing for the electrophoresis test coincided with a Global Sickle Cell Conference here in Accra. I had registered for the conference together with Vanessa’s School Nurse.
During one afternoon session I had to leave to collect the test results and as I rushed out of the hall, I met Dr. Frank Djabanor, of blessed memory, a Pediatric Specialist (Vanessa’s Doctor). He immediately asked ‘Have you checked for the boy’s sickling status?’ I replied, ‘We just had the test done this week and I am on my way to collect the results now.’ He smiled at me and said ‘It will be well, my son.’ The drive to Korle-Bu seemed like eternity. When I got there and I was handed the envelope, I hesitated before opening it – the rest is history!
I am very sure that a lot of people have been confronted with similar situations and have also felt the same. There are examples of marriages that were broken because a child turned out to have the sickle cell condition. In one instance in Elmina, a town in the Central Region of Ghana, the father of a child who suffered the condition blamed his wife and went all out to continually shame her in public calling her a witch. At a forum, we painstakingly explained the situation to him with diagrams before he came to terms with the reality. But then it was too late, the lady had left the marriage and the poor child was left to her fate.
I share the pain of every parent who has to care for a child or children with the condition. I feel the load that seems to weigh down heavily on you. I know the fears you harbor – the uncertainty of not knowing when the next crisis will happen, where your child will be when it happens and how hard it will hit. I understand the guilt that some mothers and fathers bear. You feel responsible for your child and their pains. You wish you could trade places with your child and free him or her from any more pains. But know that guilt does nothing good to your situation. It only saps your strength. It holds you back.
As I sat to write this piece, I looked back with a grateful heart. Today, I can confidently say to you, Never, Ever Give Up! That child…those children feed on your strength as parents. Stay strong, at least for their sake. Draw strength from others who have weathered the storms. Hope and faith work wonders when humans have reached a point where they feel overwhelmed. Continue to do your best for your child. Trust God to take care of the rest. Your child will grow and live a happy, fulfilled life.
Vanessa is living testimony to that, so will your child be. Stand firm. Give love, give hope. Know that the human spirit is capable of overcoming any challenge in its path. Just like ours, your story will become a source of inspiration for others someday. Life is the most precious gift we have from God. Let us always do our best to preserve it.
In all of this, let us remember that the responsibility of creating the necessary awareness and education to sensitize the public, parents, patients and families do not fall at the door steps of governments, civil society groups and NGOs alone. We all have a part to play, in our own small way to drive home the message. We have to stand united in this fight and in the words of Helen Keller ‘Alone we can do so little; together we can do so much.’ I rest my case.