Dear brothers,
During a routine 20-week ultrasound a few weeks ago, my wife and I received the sorrowful news that our daughter in utero appears to have a congenital brain deformity called holoprosencephaly. In short, this condition involves the brain not properly separating into two hemispheres, and the corpus callosum – the structure which bridges the left and right sides of the brain – is either missing or undeveloped.
Our daughter appears to be on about the middle of the severity spectrum for this disease. In the most severe cases, children have facial deformities such as a single eye socket, deformed nose, and a deformed palate. Our daughter does not appear to have any of these features. Nonetheless, while we cannot prophesy an outcome, the overall prognosis for her condition is very poor. Most children with this condition (regardless of severity) die in utero or very shortly after birth. It is supposed that less than 10% of children with this condition reach their first birthday.
As we prepare for the worst – even as we pray earnestly for a miracle, placing our trust in God who raises the dead, rather than the prophets in white lab coats – it seems wise to seek counsel now rather than later. I am thankful for resources from Tim and others concerning end-of-life care (including The Last Enemy conference). But here we will likely be dealing with some very real beginning-of-life dilemmas that I have never been put in the situation to have to deal with. We have miscarried five children in the past, all within early first trimester. We have not experienced a stillbirth, nor have we had a child who needed life-saving care at birth.
At this point, it seems likely that our daughter will survive to term, and I expect she will need some form of life-saving care right from the start. She may not be able to nurse. She may not be able to breath without assistance, and so forth.
We are of course resolved to love our daughter with all diligence, and provide every care we know how to in the Lord. To that end, I find myself needing some no nonsense, give-it-to-me-straight counsel concerning life support measures. In the fear of the Lord, it seems that I need to know what I believe about a few things before that day comes.
While there is so much that can be done to attempt to artificially sustain life in this day in age, I don’t know that all of those attempts are necessarily fitting or righteous in every situation. If a child needs a feeding tube from birth, or cannot support normal organ activity, how do you work through the decision of whether to provide only palliative care vs. trying everything medically possible to sustain life? When does it become evident that more intervention would only mangle the child in an undignified way, and it would be better to simply embrace her with warmth and love as she passes from this world?
I know a number of you men have shepherded people through these kinds of situations before. I would appreciate any counsel you would be willing to provide. I thank you for your prayers.
With love,
Jason
P.S. In case it is of any edification, the following Sunday after learning this news, I preached this sermon concerning how we respond with faith in the day of sorrow.