By Leora Leboff, Feb 21 2015 11:51AM
We all have our stories, histories, journeys that lead us to where we stand today. I didn't expect to share part of mine so soon on here, but reading an article led me to want to scream out - why was judgement being made on such a defining decision in my life?
As a word of care and warning, some of this may be hard to read, but the subject of baby loss in any form is never comfortable.
The article which prompted me to write this, is brilliantly written by Milli Hill and I am so truly grateful to her for writing it and to the women who bravely contributed their baby loss stories, allowing much needed awareness.
But there is a frustration; why does an article written with such tenderness about stillbirth and miscarriage, change its tone when referring to baby loss due to finding anomalies and making the choice to terminate the pregnancy? As I read on, the reason for the change in tone was very clear.
The word "feticide" was standing there starkly staring me in the face - foetus killer.
Why include such a punitive word in a beautifully touching article?
When I was pregnant with our second child, we discovered at the 20 week scan that our baby had brain, heart and kidney defects, he didn't have a stomach and after he was born they were unable to tell us his sex as his genitals were so deformed (test results told us later we'd had a baby boy). He had Trisomy 13 or Patau Syndrome, a chromosome disorder resulting in the baby rarely going to term and if they do their life expectancy is short. With barely an organ working in his poor little body, how our baby had lived to 20 weeks was unfathomable.
I know of women who have chosen to wait for their baby to go to term, die in utero, or at birth. I know women who have chosen not to see their baby after the birth. For me, all I could do after birthing him, was share a tender moment with him, giving him a cuddle and a kiss. He had been born sleeping and as tiny and unexpected looking as he was, I will always be grateful for that time with him. I have photos of him and his hand and footprints which I cherish. Whichever decision is made in this desperate situation, there is no right or wrong, and certainly not worthy of judgement.
So, seeing that punishing word "feticide" made me angry, misjudged and sad that once again those who have experienced baby loss, through anomaly and termination, go largely unrecognised or castigated because they took part in the decision to end their baby's life.
My children know about their brother, he will always be part of our family. Just last weekend we went to visit him at the beautiful Memorial Woodlands where he is buried. For the first time, I asked to be alone with him. Later that night I wrote:
"As I stood by my little boy's grave, I thanked him, for all he had given me. For his footprints, on paper and in my heart. We had journeyed a harsh, physically, emotionally and spiritually painful path together. But finally without tears, I told him that I could allow just the sadness, now that I had released the trauma. But also now it's time to learn, teach, raise awareness, be proud of what he has given me. I am honoured that I kissed him that night, because that's all I could have done.
My tiny little boy, truly rest in peace son."
Surely, not the words of a killer.
On Baby Harry's tenth anniversary, I wrote an article to honour him and raise awareness. This was shared by several beautiful women on their own blogs. Here is one of them.
Around 800,000 women in the UK become pregnant each year. 40, 000 of them will be told there is a risk that their baby has a serious fetal anomaly. Antenatal Results and Choices is the country's only charity to provide non-directive support before, during and after screening.
I have since been in contact with Milli Hill. She was incredibly apologietic about the inclusion of the word "feticide". She had meant to take it out of the article and will do so. The hospital that one of the mothers she interviewed had used the term. It feels shocking that such an emotive word could be used by a hospital, even if it is the correct medical terminology. Thanks again to Milli Hill for raising the issue of baby loss.
Artwork by Charlie Leboff