The Highs and the Lows...

We were at a very nice hospital down town: clean, modern, well-organised and with friendly staff who inspired confidence.

The nurse was having trouble citing an IV on Baby S. She needed one so that they could inject contrast fluid for detailed CT imaging.

Baby S was was flailing and crying as the nurse inserted the needle.
'She is strong!' the nurse remarked in Kreyol.
A Doctor shook his head. 'I just don't understand it - How can a baby with so little brain tissue behave so normally?'
'The radiologist was almost reproachful. 'Do not question the works of God. Do not question his works.'

A short time before, Baby S had been waving her arms and kicking her legs as we prepared her for her scan. The previous day, I had needed help to put a Naso-Gastric feeding tube down because a certain feisty newborn girl kept batting my hand away.

'How much brain tissue do you think she has?'
'About 20%, someone estimated.'
'Well then, maybe she has a good 20%?' I offered.

Everyone who meets Baby S agrees that she is no vegetable, but it is difficult to get specialists in a far-away country to understand that. Ancephalic babies usually do not see, hear or sense pain (so we are told). When Baby S flails and cries, then, when sucking on her hand, or being stroked or held or rocked comforts her, what is that?

Earlier in the week, the surgeon who committed to treat Baby S reviewed previous CT images, and rescinded his offer to provide care for her. Disappointed though we were, we continued to pray that God's will would be done, and we continued to believe that if God wanted Baby S to live, she would live.

As the days passed, though, Baby S's head continued to grow. She was having more and more seizures. She stopped feeding and developed diarrhoea. Hope ebbed and flowed. While people in the USA continued to advocate for our little ladie, her health was becoming ever more precarious.

She needed to have some of that fluid drained from her head, but we couldn't get a Haitian Neuro-surgeon to perform the procedure. On Monday 'we' contemplated doing it ourselves, under the guidance of an expert from North America. Maybe we could set up a video link we joked.

By Thursday, Baby S had a head circumference of 57cm (it had been 54.5cm less than 2 weeks before) and there we were, performing the procedure in a Haitian orphanage in the mountains; a procedure that would usually take place in a high-tech operating theater.

The aspiration was successful. An hour later, Dixie Bickel received a message: a well respected neuro-surgeon in Indianapolis has reviewed the CT scan images, and had accepted Baby S for surgery. Provided his hospital will provide the supportive, he will operate as soon as we can get Baby S to Indianapolis!

We have her on antibiotics to prevent her from developing an infection before she gets her surgery. She is also on regular pain relievers. We want to keep her comfortable. Please pray for her while she waits for treatment and please pray for us all as we continue through the highs and lows of loving and caring for Baby S.