“To be a mother is an opportunity for a lifetime of love. To be a
mother to a baby with a terminal illness is no less a privilege. It
is an extraordinary opportunity for a deep and lasting love.”
– Clíona Johnson, from Dublin, whose son John Paul lived for
just 17 minutes.
Ciíona’s Story – “At my 22-week scan I was given the diagnosis
that my son had anencephaly, a condition where the baby’s brain
doesn’t develop fully. I felt complete devastation as the future
my husband and I had seen for our child disappeared before our
“At the same time, we realised this child was a gift from
God. We believe all of us are made in the image of God so
every child brings an image of who God is into our lives.
“The doctors told me I had two choices. I could travel to
England and have a termination or I could continue with my
pregnancy. I remember at the time asking the doctor ‘will he
suffer?’. That was my big question. The doctor assured us ‘no’.
This baby did not know any different. He was safe in my womb.
Everything in me wanted to protect John Paul.
When John Paul was born he lived for 17 minutes. He
was held for all 17 minutes and loved his entire life. My
prevailing memory of that time is one of peace. We walked the
journey of life as far as we could with him. We had done everything
we could for him. We had given him everything that we
wanted to give him and now we could let him go.
“For us, as parents who have faith in God and in God’s
Kingdom, we were letting him go somewhere he could be
complete, where he could be fully healthy, where he could be fully alive but always with us.
“ To be a mother is a great privilege and an opportunity
for a lifetime of love. To be a mother to a baby with a terminal
illness is no less a privilege. It is an extraordinary opportunity
for a deep and lasting love.
“ There is some treasure in life you have to dig for. The
lives of babies like John Paul are a treasure way beyond what
you could have asked or imagined. To lose this in our society is
to lose something very profound.”