Posts Tagged ‘infantile spasms’

9th November
2012
written by tom

Driving home from the hospital late that night in February, I was amazed that the world appeared to be oblivious to the historical event that had taken place. My daughter – Hannah Rosalia – had just been born, and in that forever moment of wonder it was as if the world would surely come to fully appreciate her arrival.

Of course it didn’t, at least not directly. But it carried its own significance through me, and thereby, as proxy to the good news, the world will change, will be saved in some wonderful way. For one, the proper estimation of a new born child is that it will save the world; this is the only reasonable starting point.

Five and a half months later, as the diagnosis raced to bury me, the shattering news found me unprepared, incoherent, astonished, angry and beaten. Everything, it seems, had changed. Everything now carried the strain of the diagnosis. The pre-diagnosed Hannah was but a memory, fleeting away as quickly as she herself appeared to be. We start to mark our days with reference to August the 6th.

September 6th marked the one month milestone beyond which a cure and an easy recovery, and confidence in the corpus of modern medicine gave way to mounting doubt.

October 6th marked the two month milestone and brought home to complexity of treatment amid the introduction of a third drug and the 5th different combination cocktail.

November 6th and we end the third month under the spell of West’s Syndrome with different drugs, more combination cocktails and the looming realisation that the chances of a full recovery has dropped below 10%.

But it also marked a change, toward a different type of world, one that we wanted to shape for Hannah and for people like her.

5th October
2012
written by tom

It’s amazing what some thought and the falling of words into place can do.

Our Mission:

Our ultimate goal is to maximise Hannah’s chances for an independent, meaningful life. Hannah, July 2012

Toward this end, we want to make the best medical expertise available for our daughter.

Hannah has been very ably attended to by two paediatric neurologists in Singapore.

We are seeking additional opinions in order to –

  1. confirm the initial diagnosis (of “Infantile Spasms”);
  2. augment (or refine) such a diagnosis;
  3. seek more effective medication to resolve the condition and the underlying hypsarrhythmia;
  4. understand and investigate all possible causes of the condition – genetic, metabolic etc. – and to treat these where possible;
  5. explore alternative, non-traditional forms of treatment, including concurrent ketogenic dietary regimes and accelerated physiotherapy treatments;
  6. consider other, more evasive surgical solutions.