To our Lakeside Church family, brothers and sisters in Christ everywhere, friends and our dear family.
We would like to convey our thanks to everyone who has messaged, emailed, sent cards or spoken with us in the last month regarding the progress of our unborn baby. We have very much appreciated every message of love and support, even if we are unable to reply to them all.
Our lives have taken quite an unexpected turn since that Tuesday on 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, 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 has 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, Sarah 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. Sarah will also now need regular amnioreduction procedures to reduce pressure on her own lungs.
At this weeks scan we finally learnt the prognosis the team of doctors are giving for our baby, and that is 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. Yet we were contemplating a birth day that will not be anything like the beautiful day of Ethan’s birth, weeks (probably months) of visiting baby in hospital, and then a life ahead with many practical and financial implications. But with this weeks news it is now as though the storm clouds are starting to roll in.
Many of you have offered meals and practical support, and we appreciate that. Please be assured that we will reach out when we do need assistance. For now we ask that you pray for baby and for us.
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.
Please know that we still want to hear your news – we want to rejoice with you in your good news and grieve with you in your not great news too, just as you too ride the wave of grief with our baby news.
With much love
Steve and Sarah Wickham
If you want to know more about Pallister-Killian Syndrome, find it below ... http://www.rarechromo.org/information/Chromosome%2012/Pallister-Killian%20syndrome%20FTNW.pdf