New Zealand writer Emma Gilkison and her Peruvian partner Roy Costilla were thrilled with the prospect of becoming parents and looked forward to the twelve week scan. However it revealed their baby had ectopia cordis, when the baby’s heart was growing outside the chest, a condition found in only eight babies in a million births.
A referral to Auckland hospital and another scan at eighteen weeks revealed further heartache for the couple when they were told surgery to enclose the heart would not be possible as the baby’s heart had other defects. A weekend break for them to focus on whether to terminate the pregnancy was relaxing’ and as ‘an orange crescent moon was slowly sinking towards the inky black sea’ Roy said ‘Maybe we just have to wait for our son to go in his own time like the moon. Maybe we should bear with him’.
So began the remarkable journey which Emma has recorded in her memoir, The Heart of Jesus Valentino, a week by week account sharing their thoughts and doubts in a beautifully written heartfelt book.
It was Valentines Day 2014 when Emma first realized she was pregnant with the baby she had longed for a number of years so she felt it appropriate to have Valentino in the baby’s name, while Roy wanted Jesus –pronounced Heyzeus – a common name in Spanish speaking countries, and as the pregnancy progressed Emma accepted ‘maybe our son with his extraordinary heart deserved an extraordinary name.’
The couple were aware if they continued with the pregnancy the baby’s life would be very short and the chapters share their anguish and sadness, but through the weeks the reader feels the powerful message of love for the little one as it continues to grow and move in the womb.
Family and community support were essential to the couple and they found themselves reaching for help from the Buddhist and Catholic faiths, as well as New Age Healers. As this was such a rare condition little is in place in New Zealand of where to go for help before and after birthing baby’s with life threatening illness, and Emma hopes her book will be of value to those in the medical fields as well as ‘families going through similar journeys’.
I found this a powerful read, at times I agonized with the couple as they wrestled with their decisions. But the time after their baby arrived was a magical time for them, and the sixteen days gave them a wonderful sense of peace and fullfilment.
Emma Gilkison has been a columnist for The Sunday Star Times and The Dominion. She now lives in Brisbane with her partner Roy Costilla and their son Amaru.
Reviewed by Lesley McIntosh
The Heart Of Jesus Valentino – A Mother’s story
by Emma Gilkison
Published by Awa Press