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
1 comment:
You are an amazing man of strength and honor to write such a heartfelt piece, in the midst of such dark clouds. The fact that you continue to encourage others even still is a sweet blessing for us all.
May God pour down the " rain" right now on you, your wife, and little babe! Amen!
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