I am proud to share this heartrending story with you, it highlights the horribly lonely situation that many women find themselves in when they find they have to have babies terminated. My PAPA colleague, massage therapist Leora Leboff has asked me to send this to raise awareness of the issue among women, so that maybe fewer of us need suffer in silence. Her story is below and you can share it in whatever way you feel appropriate.
If you would like to support ARC, a charity that offers non-directive support and information to expectant and bereaved parents, you will find them here.
Loneliness. It’s been a recurrent theme since losing Baby Harry. From the moment I was told at my 20 week scan that my baby had a series of anomalies and that I may need to terminate the pregnancy. Not long after I knew I was expecting him, I had instinctively felt something wasn’t quite right. However, it didn’t make the process any less shocking as I wished at the time that my instincts had been completely wrong. When the anomaly midwife sat my husband and me down in a side room, I didn’t know how to process the information I was receiving.
In the coming days I was surrounded by my loving husband and the dearest of friends, but I felt lost and alone. I didn’t sleep for days, my mind buzzing with possible decisions. Or maybe I didn’t sleep as I just wanted to spend more time with my baby.
In the weeks and months after, I found it hard to burden anyone with how it feels to have the bottom of your world swiped away from you in this way. Sometimes the loneliness was welcome. After the termination when I was recovering, often it was almost too much to get out of bed to pick my son up from nursery. I just wanted to stay curled up under my duvet, away from the world and work through the pain.
I did try to keep myself occupied while I was signed off work by organising a 75th birthday bash for my Dad. I’m so happy that I did this for him, as just three months after Harry was born my Dad suddenly and unexpectedly died from a heart attack. Let’s just say it was a truly challenging time as three months prior to losing Harry, my Mum had lost her run in with cancer and also passed on. So when a cuddle from my darling Mum was most needed, she wasn’t there – loneliness. Three different kind of bereavement within 6 months of each other to deal with. My friends were amazing and my husband a huge support, but as I said it felt difficult to burden them with the indescribable intensity and confusion of emotions that were hurtling around. Luckily I started seeing the women’s services counsellor via the maternity unit . She was a darling and literally a life saver.
Another form of loneliness or isolation has been present for me over the years; something about this particular form of baby loss. Losing a baby through anomaly and termination is often not included with other types of baby loss. I recently sponsored a colleague who was taking part in a charity event for miscarriage, still birth and neonatal death. I sponsored her because it was for a hugely important cause that is close to my heart, but I did feel a twinge if sadness that anomaly and termination was not acknowledged.
Perhaps it is because when you lose a baby in this way you have had to take an active role in the process – to actually terminate the pregnancy. How incredibly hard it was taking the medication that I knew would end the life of my baby. Up to 20 weeks you have to take medication, after 20 weeks an injection is given to the baby to ensure s/he is not born alive.
This is just one of the painful realities involved with termination. How my little boy lived to 20 weeks in utero was amazing; he had brain, heart and kidney anomalies. He didn’t appear to have a stomach and when he was born they were unable to tell us if he was a boy or girl as his genitals were malformed. We had to wait until the results of the amniocentesis came through a week or so after the birth to be able to name him. He had Patau Syndrome or Trisomy 13, a chromosome abnormality. My pregnancy had become a 1 in 5000 statistic.
As the years have moved on, the loneliness has continued as it is socially expected that past events are consigned to the past. Only recently the full understanding has hit me that our lost babies are not meant to be forgotten. Why else were we given pictures of him dressed in a little angel style outfit, and his tiny hand and footprints? I want to remember Harry; he is part of our family. My daughter never knew her other older brother but my eldest son, who was 2 when Harry was born, cried deeply last year when we went to visit his grave; he cried for the brother he could have shared time with and the older brother he could have been.
It’s not about forgetting. In my experience it is about moving along to a place where it’s a bearable memory and the physical and emotional trauma, which may be unique to this kind of baby loss, is worked through and acknowledged with kindness.
As a massage therapist, I chose to take a special interest in pregnancy and I teach infant massage. When I trained in pregnancy massage, my counsellor asked me, “isn’t working with pregnant women like nails going down a chalkboard?” For me it was the only direction I wanted my work to take. Over the years I have treated and supported women who have experienced still birth, miscarriage and fertility issues. My heart is with them.
On November 5th it will be 10 years since Harry was born in stillness and soundless. He is buried in a Woodland Memorial near Bristol and we visit him a couple of times a year to see the maturing trees. Strangely the tree near Harry isn’t growing as vibrantly as the others. I recently went there with my son and he commented that perhaps the tree is reflecting that Harry died so young; neither of them can grow up. One thing I do hope, that he’s not lonely.
The charity Antenatal Results and Choices (ARC) is the only charity in the UK to support the 35000 women a year who are told after screening that their baby has a serious foetal anomaly www.arc-uk.org