Jonathan developed jaundice but it was considered to be mild such that he was discharged from hospital on the 4th day after birth. However, we had to take him to the local out-patient clinic to have his bilirubin level checked. After several visits, where Jonathan had to endure drawing of blood from his toe, his jaundice became severe enough to warrant hospitalisation and blue-light treatment. He was already 10 days old and was considered a `late onset' case.
The blue-light treatment brought the bilirubin level down to a milder level but the jaundice persisted such that Mummy had to stop breast-feeding for 10 days (initially for 3 days but the jaundice still did not go away). Thankfully, after that, the bilirubin level dropped to a negligible level and Jonathan was considered well.
Jonathan was growing beautifully and at 2 months looked more like a 4-month old baby.
As with all first-time mothers, I read scores of baby books and kept a keen eye out for developmental milestones. To me then, Jonathan was generally up to mark - he held his head up, propped himself up and rolled over at the expected times. He could sit unsupported, albeit a little unsteadily.
On hind sight, and also if I had been a more experienced mother, I would have been concerned about certain things that I had noticed with Jonathan such as:
* when reaching for things, his hand would tremble and the third finger droop downwards
* when he sat, his back was very curved and the bottom of the spine stuck out
* he never kicked nor raised his legs into the air as babies are wont to
* his movements were generally slow and he was unsteady and wobbly
However, at the time I had put it down to Jonathan's personality - he never was a physical baby nor one that was easily provoked to uncontrollable laughter. He was, and still is, a serene and accepting child with a reserved air. To me, he was just my gentle, darling little boy and I loved him as he was.
In Jonathan's first year, we were living in Manila due to a job posting.
While Jonathan was born in Singapore, we brought him back to Manila when he was 2 months old.
We went for regular paediatric check-ups and it was when Jonathan was 10 months old that we mentioned our concern about his protruding backbone. We were referred to a paediatric orthopedist who after some X-rays declared there to be nothing structurally wrong with Jonathan. However, the doctor noted that Jonathan was hypotonic - 'soft' muscle tone.
Soon after that visit, we returned to Singapore where Jonathan underwent an EMG (Electromyography). The result was that there was significant muscle firing and we were advised to get a muscle biopsy done.
Jonathan had some muscle fibres removed from his right thigh on September 1998. We had to wait 2 agonising weeks for the results of the biopsy which showed degeneration `consistant with Wiernig-Hoffman disease' or Type I Spinal Muscular Atrophy. Unfortunately, the neurologist that we saw did not believe that there was any benefit in Jonathan getting physiotherapy and we fought our first battle then by insisting on a referral for PT.
We sought a second opinion which confirmed the diagnosis that Jonathan had SMA. However, this neurologist put it at between Type I and II as Jonathan had characteristics from both. This neurologist also believed in PT and advised that it was important that we ensure proper seating and nutrition for Jonathan.
I was incredulous when we got the diagnosis - Yes, I knew about Down's Syndrome, Cystic Fibrosis and Thalessemia, but I had never heard of SMA. Furthermore, no one in both our families had any physical problems, so how could it happen now?
We searched the Web and came up with lots of resources and information about SMA that really frightened me - respiratory failure, scoliosis, unability to swallow. I sorrowed that my beautiful baby would have to face so many difficulties that I wished that he had fallen into the Type I category and in all likelihood go to Heaven quickly and not have to suffer so. As it was, he was in the limbo-land of Type I/II where he may or may not be OK.
Surprisingly I did not grieve for long - I suppose I coped by not asking `Why?!' because there can never be a satisfying answer, can there? Also, I just transferred my sadness by putting my energies into daily home exercises for Jonathan and planning nutritious meals to boost his health and immunity.
Still, at the beginning of the road, I was very fearful because as Jonathan's main care-giver, so much depended on me. Will I be up to the task to help him feed/dress and in general do things for himself? Will I be able to nurture self esteem and grow a confident and fighting spirit in him? Then I worried about daily living like How will he move about? How will he manage school? Will any school enroll him in the first place? Everything was so uncertain and the path was, in my mind, strewn with boulder-sized obstacles.
In honesty, I have never really stopped crying for Jonathan and I will still cry, not for the lost hopes and dreams that parents have for their children, but for the struggles that Jonathan will have to face in life to achieve any of his dreams.
