Our lives took quite an unexpected turn on Tuesday 1 July, with the discovery at a regular 19 week scan of a Congenital Diaphragmatic Hernia in baby – in this case there is no diaphragm on the left side, frontiernews allowing other organs to drift into the chest cavity, displacing the heart and squashing the lungs.
We were referred to King Edward for specialist care under Prof. Jan Dickinson, and through an amniocentesis it was discovered that baby had Pallister-Killian Syndrome, a rare chromosomal disorder. Some babies are mildly affected, but many will have severe to profound intellectual disability, will be wheelchair bound, as well as have many other severe physical development and health issues. As part of the condition, my wife has too much amniotic fluid (Polyhydramnios) which means the ‘bump’ is much larger than it should be, and puts bub at risk of an early birth.
At this week’s scan we finally learnt the prognosis the team of doctors are giving for our baby, and that there are clear indicators in our case that baby will not survive.
It is difficult to explain the grief we are now experiencing. Initially it felt as though we were in a calm before a storm as we felt as though day to day life was much as it was before. But with this week’s news it is now as though the storm clouds are starting to roll in.
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And so we come to how do we pray for baby, and all we can say is – God’s will be done. Our God is a God who can perform a miracle in this little baby’s body if he so wishes. Our God is also the God who, in the words of Job (Job 1:21), gives and takes away. How then do we pray? If it is God’s will that baby survives – then that there will be ample time for the lungs to grow, the organs are held back by God’s hand to allow room for the lungs to grow and mature, and that baby thrives and has a fulfilling life. And if it is God’s will that we only know this baby for a short time, that God will make that clear to us both and we will know when to let go.
