In Septemeber 2008, I traveled 6000 miles to Haiti's Kenscoff mountains. My mission: to care for some of the orphaned and abandoned, the sick, malnourished and premature infants of this beautiful but beleagured Caribbean nation.

Saturday, 20 June 2009

Optimism and hope, Realism and Doubt

I try to be optimistic, because optimism breeds hope. Hope in turn strengthens faith, and with faith anything is possible. At the same time though, I have to be realistic...

Take Baby S: our instincts tell us that there is more to her than her CT scans suggest. When her eyes seem to meet ours, or when she grasps our fingers in her tiny fist, or when she nestles close to us, and we feel the steady rise and fall of her breath, there is a growing sense of attachment; sweet and simple.

Yet Baby S's situation is neither sweet nor simple. Every Dr who reviews the CT images agrees that she is ancephallic, meaning that she has substantially less brain tissue than she ought to have. We are told that a diagnosis of ancephally usually come with an inability to see hear or feel. While our little lady certainly seems to be deaf, she pays attention to human faces, she cries and flails when she is in pain, and she is soothed by gentle touch.

Yet for every positive sign that her brain is active, there is a worrying sign: there are episodes of hypothermia, she has seizures, and a few weeks ago she stopped sucking. When she started to suck again she stopped swallowing and began wretching, choking and vomiting whenever we fed her orally. Last week, the results of an EEG seemed to be the final factor in determining whether surgery really would make a difference to Baby S's quality of life or whether it would even increase her chances of survival.

The result: she was asleep when her brain activity was measured. When she was asleep, she produced normal "sleep waves."

We have been aspirating cerebro-spinal fluid every other day. Baby S finds this painful and lately, she has become upset when we prepare her for the aspiration. The head Haitian nurse was clear in her her assessment of the wails that Baby S let out when we swabbed her head with an antiseptic solution: Baby S knew what was coming, and that was a sign of intelligence. Pain response is a fairly primitive reflex, but memory and anticipation are something else.

There is no certainty about Baby S's prognosis or about her potential. At this point, many minds are burdened with the knowledge that the decisions they make today, will affect Baby S's tomorrow. Please pray that God will imbue all those who consider Baby S's case, with the knowledge and the wisdom they need to make the decision that is in her best interests. Please also pray that optimism will thrive, and realism will not lead to unfounded doubt, or to despair.

1 comment:

Rebekah Hubley said...

Susan...Have you talked with Dixie yet??? :-) We feel led to move forward and bring her here, despite science and despite her odds. GOD IS BIGGER THAN ALL OF THAT!!!!!!!!!!!! We will tell the Dr. our decision to go forward tomorrow... Thank you for taking care of this precious gift from God!!!