Archive for February, 2013

12th February
2013
written by tom

The sixth day of the month has come to have a significance of its own since August last year. It was another Monday, the start of another week. We were just disembarking from the shuttle to Jakarta when Jen called with unusual, meaningless, nonsensical news and that I should catch the earliest return flight.

Hannah had been diagnosed with “West Syndrome”; she had just turned 5 months. The 4 hours between hearing the news and boarding the return flight was long enough and empty enough to learn enough about the reality of “infantile spasms”, a severe form of epilepsy that occurs in 0.0002% of infants.

Over the following months, Hannah was treated with half a dozen different drugs. She was initially pumped with steroids; she gained so much weight and her face swelled until we could barely see her eyes. Every four weeks, the time it takes for anti-epileptic drugs to “stick”, we would bring Hannah for an EEG, which measures brain wave activity. Two NUH lab technicians would position 30 nodes, at the end of different coloured wires, onto predefined parts of her scalp, transforming our Hannah into a little Medusa.

We grew to have some insight into reading theses brain wave patterns; each electrical pulse, each discharge, meant something. Hannah’s brain-wave activity was so chaotic – an occurrence called hypsarrhythmia – it blocked perception and undercut learning and knowledge retention. External stimuli literally made no sense.

The past six months are difficult to describe. Little else mattered apart from Hannah, and we would be cheered by the occasional smile, and chastened by every seizure. She, or more correctly, the condition, sapped us. Our world shrunk to a size congruent with our energies. Like Hannah, we would awake each day as if the day was really a new day; the difference, of course, was that it was acutely true for her.

The first line of drugs are usually the most effective, with the likelihood of success at 60%; by the time we reach the 6th line drug (which in our case was topiramate), the chances of its effectiveness in counteracting the condition slips to around 10%.

Sometimes though, 10% is enough. Late on 17th December, Hannah started wailing uncontrollably. She cried as if for the first time. We must have appeared perverse, taking such joy from the tears of an infant. The crying meant that Hannah had somehow “snapped” out of her wakeful coma. The following 18 hours were amazing, as Hannah finally, belatedly, came back to our world. It was as if she was able to take cognizance for the first time, with each sound, each smell, each sight a wonder for her.

Since then, it’s all about hard work, as this 11 month old has had to learn for herself, for the first time, the things, movement, sounds, gestures and faces that 11 month olds “naturally” do and know. Jen – with this as with much else – has taken the lead with exercises designed to replicate and hasten the development curve that infants follow.

We don’t know where this will lead. A relapse is but a day away. But in the meantime, we have other, more significant, significant dates and we remind ourselves of this much like the alcoholic who attends AA: It’s been 75 days since Hannah’s last seizure. In the long term, autism remains a possibility, as is the particularly debilitating Lennox–Gastaut syndrome. We don’t know if she will have learning difficulties or behavioural issues, or if she will manage an independent life. We do know, however, how great it is to have her back.

And I tell her that every night.