Deaf-Blind Triplets Lift Worried Mom’s Spirits

Normally a quiet, self-assured woman, she went to pieces when her first child, then 11 months old, was diagnosed with sickle cell anaemia (SCA).

It was not just possible. She was AS – she had long known that – but her spouse was AA! Laboratory error had drawn her into the very scenario she long dreaded and swore to avoid. Her life would never be the same again.

‘At the time Shofune Ogonsiegbe** was diagnosed with SS,’ his mom recalls, ‘I was already three months pregnant with my second child.’

The months before Afusetu Ogonsiegbe delivered another baby boy with sickle cell anaemia were fraught with mental agony. She ate little, slept little and had vivid dreams and hallucinations. The little one she was still then breastfeeding, sensing something amiss, turned away from her milk.

Third Child With Sickle Cell

Mrs. Ogonsiegbe well knew the chances of her producing yet another child with SS.

At the Sickle Cell Club she attended, few of the families had more than one child with SCA. They had other children who were non-affected. She confided her anxieties to a few about having more children – how did they do it?

‘You don’t leave your matrimonial home because your child has an illness,’ she was advised. ‘If your husband is not putting you under pressure, stick with the two children and do your best.’

Osaro – her husband – was not putting her under pressure; she was the one asking for more! He had even suggested undergoing a vasectomy, but she discouraged him. Why should he take a defeatist attitude to a game of probabilities?

She was restive – her first born was 13 years old already and the second, 12. Time was not in her favour!

For God’s sake, there was a whopping 75% chance she would not produce a child with SS. She wanted non-affected children by all means, sickle trait inclusive. So Mrs. Ogonsiegbe braced herself to have another child, this time with cheerful optimism. Heaven couldn’t be so mean as to give her three children with sickle cell in a row.

A Laodicean in religious matters (neither cold nor warm), she took fiercely to prayer and asked her closest friends to assist likewise. The family could afford to do prenatal diagnosis but would not be able to live with the emotional consequences of terminating a pregnancy, should it come to that.

When she was halfway through her pregnancy, her heart sank when 13-year old Shofune, on hospital bed with severe crises groaned, ‘Mom, I have been praying God would not give you another child with sickle cell!’

Who Would Bury Me?

After God gave the family what He wanted, Mrs. Ogonsiegbe did not run amok as many of her friends feared she would. Indeed she was eerily and frighteningly calm.

Her innermost apprehension was, who will bury me? The phrase would recur in her mind for many years. Mrs. Ogonsiegbe had conveniently forgotten the African proverb which says: ‘whether you have children or not, children will bury you!’

Customized Sickle Cell Crises

Of the Ogonsiegbe Three with HbSS, only Shofune is severely affected. Now 16 and in university, he has been hospitalized dozens of times, usually with excruciating pain crises.

Even in the middle of his crises, he manages to mumble to his tearful parents, ‘mom, dad, please don’t worry about me. I will be fine. I know for sure my siblings and I will live to repay your love and care!’

Whenever he utters such words, his parents become even more emotional, and weep their combined tears of joy and sadness.

His brother and sister have never been ill. The parents realize their luck in that but ensure they keep to a routine of SCD crises preventives all the same.

Lifted Up By Other’s Woes

Since having all her three children in life affected with sickle cell anaemia, Mrs. Ogonsiegbe has taken to the internet to research effective management tips as well as reach out to other families facing similar challenges. Her spirits soared when she came across the story of the Dunn Triplets who became deaf and blind shortly after birth as a result of prematurity.

‘There incredible story – and the doggedness of their parents – gave me reassurance that, with determination and God’s grace, my children will survive!’

**Names changed to protect identity