Engraved On The Palms of My Hands

We suspect that Sophie had Trisomy 18, also know as Edward's syndrome. It is a 'lethal' chromosomal disorder, one that is 'incompatible with life'.

Certainly, most children with Edward's syndrome are miscarried, or still born. Only 5% survive labour and delivery and only 1% live beyond their first birthdays. Yet.......yet there is something unfair, and unjust and cold about the term 'incompatible with life' It infers that there was no hope in Sophie's life, and no point to it.

She was with me for two weeks, that was all, but in that time, through caring for her, I learned many things:

I learned to diagnose problems I couldn't see - subtle signs of poor gas exchange in her lungs, or a decrease in her cardiac output.

I learned to think outside of the box and to make use of what I had to treat particular problems Sophie was experiencing, like giving epinephrine to bring her blood pressure up and increase the volume of blood her heart was pumping with each beat, when I saw the signs that she needed this. I would never have thought to use epinephrine, except in a resuscitation, but it was a temporary fix that might buy us time, and stabilize another child in the future......

We didn't have an IV line, and so I researched alternative ways of giving particular medications that Sophie needed, with surprising results. This knowledge didn't save Sophie, but it made her more comfortable, and it might save another child..........

I came up with modifications to the CPAP that allowed me to do things that I would not have thought were possible. Although these modifications did not affect the final outcome in Sophie's case, I am fore-armed with a strategy that might save the life of a critically ill baby at some point in the future.

In Sophie's last hours, sick though she was, she was drawing in air with tremendous force, leaving deep depressions in between her ribs. Her blood oxygen levels were 'incompatible with life', yet her heart was beating at a steady rate of 150 times per minute, which is normal for a newborn baby. This was the instinct to survive, and it more than that. It was strength despite fragility, it was the will to to live, it was Sophie's remarkable spirit, fighting against the odds. What a privilege, to care for such a phenomenal little girl!

I am in no doubt that much of what I do here, from this day forward, will be influenced by Sophie. So you see, if her life was short, it was not without purpose, and she has left her mark, just as God intended.

'I will not forget you! See, I have engraved you on the palms of my hands.' (Isaiah 49:15-16)