YOUR relationship with your doctor is all about your health and well-being. It’s not just for the immediate present and near future, it may well be a life-long bond. What many don’t realise is that the relationship doesn’t always end after you leave the clinic.
When you have a good relationship with your doctor and his team, built on mutual trust and respect, you won’t really be “out of sight, out of mind” with them. And that works both ways.
My family and I have been very fortunate to have doctors who remember us when new technology or medication is available and we are asked to visit them. This type of relationship is especially beneficial when you’ve exhausted every avenue in terms of treatment and medication, and you’re praying for a miracle.
One such moment for me was when my firstborn son, Omar, was diagnosed with intractable seizures and no amount of medication or combinations of them helped him. Treatments and diets didn’t work either. Nothing did. We felt as though he was on death row, just waiting for the final blow; he was only 18-months-old.
By chance, a surgeon who specialised in neurosurgery (who was experimental and considered radical in those days) had just published his work. He was also coming to Kuala Lumpur to give a talk and review some cases.
Omar’s neurologist remembered us, and my son seemed to fit the patient profile of the neurosurgeon. To qualify for surgery, Omar’s neurologist pushed for an appointment for us to meet him to see if he could help Omar. I had just delivered my second son two weeks before and was still in confinement. I come from a strict, traditional family that observes confinement to the letter. It meant no going out of the house or lifting or carrying anything heavier than my newborn.
All those restrictions went out the window with this sliver of hope. My husband and I went to see the neurosurgeon with Omar and his baby brother Othman, in tow.
We met the neurosurgeon who reviewed all the tests and treatment protocols we had followed, examined Omar and announced that Omar was a good candidate for surgery. But it had to be done as quickly as possible because there was a window of a few weeks left and past this the surgery would be of no help.
This surgery had to be done before Omar turned 2 years old for it to be successful. The later it was done, the less likely it would be successful due to the nature of the brain and many other conditions that go with it.
We made all the necessary arrangements and boarded the plane to Los Angeles within the month. To cut a long story short, the surgery was successful. Omar’s seizures stopped immediately and completely after the operation. He recovered by leaps and bounds, caught up with his milestones and made up for lost time.
After we returned from the United States, we were back in the care of the same team of doctors who looked after him. We came back with aftercare notes and follow-up files. The story did not end there. Our work had been cut out for us — what we needed to do for Omar’s recovery. There were appointments with many paediatric teams — neurosurgeon, neurologists, orthopaedic, ophthalmologist, dental and physical therapy (physio, occupational and speech).
It was a coordinated tag team and everyone was aware of the treatments and medications prescribed.
It has been more than 25 years since this “adventure”. We are still working with different doctors for different needs. Omar has now been transferred out of paediatric to the adult clinic, but the departments are much the same; only a different set of doctors.
If you’re a caregiver of a child with special needs, you need to have some sort of plan from cradle to grave. If your loved one is an ailing elderly, you also need to chart out your plans.
For those of us in such a situation, we often worry about their fate and future if they outlive us. We feel that we are their best caregiver — someone who loves them totally and unconditionally and would worry if our special loved one gets neglected, abandoned or abused. Of course, while we will never have absolute say on this matter after we’re gone and they survive us, we can nevertheless make plans.
We need to make the plans as solid as possible, starting with some financial means, as well as medical attention.
In Omar’s case, it all began with the paediatric team. We went through a few doctors and specialists until we found a team who was in it for the long run. When they eventually pass the baton to another team, there will still be a sense of continuity.
Putri Juneita Johari volunteers for the Special Children Society of Ampang. She can be reached at juneitajohari@yahoo.com.