“Will all the fathers in the room please stand up,” the Occupational therapist said. She then asked the rest of us to clap for them. I was new to this so I clapped with little understanding. At the end of the meeting I approached her, “Why did you ask us to clap for the men in the room?”
“Because when we began these meetings, they were more than the ones you see here today. Many of the ladies here have been left along the journey.”
Research has shown that some of the leading causes of divorce are infidelity, incompatibility and lack of communication and intimacy. From my experience, having a child with special needs is a catalyst that can stretch your relationship to breaking point.
My baby was born with a rare disorder. Agenesis of the corpus callosum.(ACC) Mouthful ey? But it makes you look intelligent when you say it at a dinner party. Suddenly silence fills a room as people wait for you to explain what it means. (Which I will in the learning section at the bottom).
Man plans, God laughs. Imagine with me your first pregnancy and all the hope that comes with it. You take every precaution, every instruction, every vitamin to grow this little being. Because it’s such a natural occurrence, no one ever prepares for the worst. In fact, I dare say most first time mothers probably fear labour pain more than anything. I know I did. Would I strip naked and sing dirges in the hospital corridors? Would I be the silent kind that winced during contractions? ( Fat chance) Or would I be the uncooperative violent kind that slapped my husband each time my pelvic muscles stretched? I didn’t know.
But labour came and went like a passing wind. It was uneventful. And so was Gift our son. He announced his arrival with ear piercing screams. I was told he scored 10 over 10. Yes. All babies are given a score when they are born. If you ask me, it’s the mothers who should be scored. We are the ones who do all the grunting and pushing. I digress.
We took him home and began the lifelong journey of parenting. Amidst the horror of sleepless nights and cracked nipples, Paul — my husband — noticed a swelling on the right side of Gift’s head. We asked about it during his well baby clinics but no one thought anything of it. They said he was fine and whatever it was would regress with time. Until he got a cold.
When your first baby gets the sniffles, you don’t know how to ‘observe’ or ‘wait it out’, you panic. You feel like he can’t breathe through those small nostrils. So we took him to see a pulmonologist. Overkill I know but we weren’t taking chances. It was him who heard us when we brought up the issue of the swelling on his head. And it was him who had that look that says ‘ something is up’ when he examined Gift. He kept measuring his head over and over as if it was growing with each measurement and then he sent us for an ultrasound scan.
The same thing happened while the ultrasound was being done. The technician kept circling around a certain area and creasing his brow in the process. He went out and called his senior who repeated the process. All the while my gut twisting in a knot. The silence was so loud. When they were done, they gave us the printed report to take back to the doctor. We couldn’t wait. We read it. Hydrocephalus! ‘What was that?’ We wondered. Such big words for such a small baby. We were stunned. So we took out our phones and consulted the doctor that offers free consultation to give you the worst possible news — Google. By the time we got into the doctor’s office we were flustered.
From the scan, it was found that Gift had a cyst that was blocking the drainage of the fluid (CSF) in his brain . The fluid would then build up resulting in enlargement of the head (hydrocephalus) amongst other things. I clenched my fists and dug my nails into my palm in a fight to hold back my tears. I wonder if doctors know that after they drop grenades of bad news, we, the recipients become functionally deaf. It’s not deliberate. I could see his lips moving as I studied the character of his face, but I couldn’t hear what he was saying. He concluded by sending us for more tests and assisting us to book an appointment with a paediatric neurologist. The medical tourism had began.
The next test was an MRI of the brain. That was the one that showed the agenesis of the corpus callosum. We consulted Google again. Bad idea. It painted such a grim picture of what it was. The images were worse. But once you go down that rabbit hole, you can’t help but keep going. By the time the appointment to see the neurologist was due, we had become specialists ourselves.
We walked into the waiting room to see him. I remember looking around and feeling even more distressed. Children with all sorts of deformities and disabilities filled the room. It was heartbreaking to watch. Suddenly we had been introduced into a world we never knew had existed. Finally our turn came. We discussed both issues at length. The hydrocephalus and the ACC. By now my hearing had been restored. I had overcome the initial shock. He said Gift would need surgery to remove the cyst so that the fluid would drain out. As for the absent corpus callosum, nothing could be done about it. It was absent. There were no spares.
Next stop — Paediatric Neurosurgeon. Up until this point the only neurosurgeon I knew of was Ben Carson. I was amazed, even scared to meet one who not only could operate on people’s brains but on children’s brains. He turned out to be a kind fatherly man. He spoke gently and with clarity; explaining everything with ease and answered our googled questions. His words fell on me like a tight embrace of reassurance and so we consented to the operation which was to be in a few days.
The surgery took longer than we expected and when the Neurosurgeon came out he said, “It was harder than I anticipated, but we did the best we could. We will know in a few weeks whether we will need to go back for a second surgery.” I broke down when I heard this- releasing all the built up tension that had accumulated in the past weeks. What did he mean a second surgery? One was already far too much and the recovery period for Gift was challenging.
Three weeks later, a repeat MRI showed he had managed to sort out the problem. There was no need to go back. Problem 1 solved. Something to be grateful for.
After that, some form of normalcy resumed. Gift continued to grow well until his first birthday. During a family function, someone observing him noticed he was having partial seizures. They were subtle and you had to be keen to see them but they were there. In an hour he would have almost 3 seizures. We took him back to the doctor. And so began a series of admissions and cocktails of drugs.
I passed that year like a kidney stone. It was agonizing to spend more time sleeping on a hospital bed than your own bed at home. There was a time we were admitted for a month that I could easily pass for hospital staff. Insurance ran out, patience wore thin and still his seizures did not stop. It became so bad, he regressed in everything.
“Your child will be a special needs child.” The doctor mentioned. “ He will need different forms of therapy going forward.”
I had long since stopped crying physical tears. Now my heart just bled. And the sad part is you can’t stop to take a break. There were days I would bargain with God to swap diseases. Take this one Lord and give me a milder one. Sadly life is not a buffet of choices.
We would be discharged home only to end up back in the ward. A merry go round. We started therapy and he would improve until he had a seizure and it would restore factory settings. It became a futile exercise. We decided to seek a second opinion. Then a third and fourth until we had seen all the specialists in the vicinity. His drugs would be changed over and over. If he was not seizing he was suffering from the side effects of the drugs which sometimes included excessive drowsiness or hyperactivity.
We had reached our tipping point. So with the support of friends and family, we went to India in a quest to find answers. Several tests later and a few alterations in his medication gave us reprieve. It was the longest time he had been without seizing. They didn’t stop altogether but they have become as rare as a blue rose.
Even then, Gift had changed significantly. Whether it was due to the seizures or the ACC we don’t know. His speech was delayed, coupled with behavioural changes. It’s like a light had gone off in his mind. The neurologist said in some instances he would be diagnosed as autistic even if he wasn’t. This is because the symptoms of ACC were cousins to those of autism. And the remedy we were given was dietary alterations and therapy.
The improvement has been slow but remarkable. He called me mum for the first time when he was five years old. My eyes have been opened to the needs of children like Gift. He is not a special needs child, he is a child with special needs who inspires a special kind of love. I too, have grown. To be able to speak of him without breaking down is a milestone for me.
Through him I see the world in different colours.
The colour of kindness when my boss advocated for our corporate insurance to undertake the bill for his surgery when he was just 3 months old.The colour of favour when his surgery went well and he did not need a shunt to manage the hydrocephalus like most children do.
The colour of love when my family continuously take over for me when I need a break.
The colour of support when friends invite us to their homes knowing how hyperactive Gift can be.
The colour of faith when we took a step to have a second child despite the fear of what she would turn out to be. She is now her brother’s greatest friend. Even if she is younger, she challenges him constantly.
And the colour of dedication when Paul — who doesn’t like the limelight- stood by us, held my hand and stayed ever so close.
Parents, you are your child’s greatest advocate. If you see or sense anything wrong, get it checked.
To Paul and the fathers who stay — Happy father’s Day.
The corpus callosum is a large banana shaped structure that connects the left and right side of the brain.
Agenesis of the corpus callosum (ACC) is a rare disorder that is present at birth. The cause is usually not known but some research has shown that it can be inherited or caused by injury/infection betwen the 12th and 22nd week of pregnancy. Exposure to alcohol while pregnant may also lead to ACC.
ACC is frequently diagnosed in the first two years of life with an epileptic seizure being the first symptom. In some cases however, it may have no apparent symptoms for many years.
Signs and symptoms: Epileptic seizures, delayed milestones, impaired mental and physical development, hydrocephalus.
Treatment: Treatment is symptomatic and supportive. Anti-seizure medications, special education, physical therapy, and related services may be of benefit depending upon the range and severity of symptoms.
*A Pulmonologist is a specialist whose focus is on the respiratory system.