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Jean’s fundraiser for Sands, the stillbirth & neonatal death charity
This autumn I will be taking part in the 310,000 Steps in October challenge to help raise money for Sands, The Stillbirth and Neonatal Death Charity. Autumn is always a poignant time as it is the anniversary of the death of Megan, our baby girl, who died sleeping. Although years have passed and we are blessed with two wonderful grown children and four beautiful grandchildren, we think of Megan every day. Megan was not a tragic ‘thing’ that happened. She was not a ‘thing’ that wasn’t meant to be.
She was a baby, she was our baby. All these years later, she still is. I carried her for every second of her life, and I will love her for every second of mine.
I was around 33 weeks pregnant when I had my ultrasound scan. For various reasons out of our control, this was later than it should have been, and we were a little anxious as I’d already had two very early miscarriages. However, we had Chloe, a very healthy two-and-a-half-year-old and this pregnancy seemed to be progressing with few problems. We looked at the screen for the image of our baby. The sonographer was ominously quiet and then all of a sudden turned the screen away from us. She put her hand over mine, and told us very gently that our baby’s head was not properly developed. The pregnancy could continue but our baby would not survive. The shock and what felt like a physical hammer blow was so great, I couldn’t take anything in. We walked down the hospital corridor and out into the autumn sunshine, my husband’s arm around me and I held both hands over my stomach, trying to protect a baby I had just been told was not compatible with life.
Our baby girl was anencephalic, a fatal neural tube defect where parts of the brain and skull are not formed. There is no treatment, and babies with this condition die during or shortly after birth. We would later discover that there was no simple reason or cause for neural tube defects, but we were at risk of it happening again. There is a complex combination of factors and our baby did not have a chance very shortly after the time she was conceived.
We were given the stark choice. Continue with the pregnancy for the next seven weeks to full-term, with the knowledge that our baby would not survive. Alternatively, go for an induced labour and our baby would not survive. There was also the information that labour would become increasingly difficult for the longer the pregnancy continued as there would be some serious risk to me. It wasn’t a choice, Our baby was going to die.
All the doctors and nurses were all incredibly kind and tried to give me and my husband all the support they possibly could. Our deep concern was that our baby wouldn’t suffer, and we were told that due to her serious condition, she would feel no pain.
I was in hospital for three long, sad, slow days before my body finally gave up my baby. On the third day it all began, excruciatingly painful labour. Baby was there, a little girl. We had the name ready. Megan. Perfect little face, perfect little hands feet, arms, legs, and body. Her poor little head not formed properly, but discreetly wrapped by the nurse. There was no heartbeat. She was born asleep. We wept and were left for a few precious moments with our little girl. Our hearts were shattered, tears of anguish and we prayed for a miracle.
I don’t think anyone could have prepared us for the coming days, weeks, and months. It hadn’t occurred to me that my milk would come in. I was leaking milk, and each drop was like flood of tears, all this milk and no baby to feed. There were things to arrange, a memorial service, candles to light, follow up appointments and kind visits, messages, cards, gifts and flowers from family and friends, all in a blur of tears. So much sorrow. People trying to be kind, but somehow managing to say the wrong things. Worse than that, people not wanting to cause upset so saying nothing. There were platitudes and comments of “Never mind, try again. You can have another baby.” As though a planned, wanted, and loved baby can be supplanted with a substitute.
One of the hardest things was seeing mothers with new born babies. The desperate ache of seeing little wrapped bundles of love. Sometimes I felt like the pain was slowly demolishing me. I was told it would take time, that time heals. Well, I’m not sure about that. I think that I just learn how to live with the grief. You come to understand that the depth of hurt continues, but it just becomes part of you. People seemed to think I should be getting over it, moving on. I tried so hard to act how I was being expected to act, to pretend that life was continuing as normal, that I was okay. I smiled, I laughed, I pretended I was okay. I had to be. I had to be a good mother to Chloe, to wrap her in love. We were so, so grateful that we had her, our little light shining through all the sorrow.
After a few months, someone gave me a leaflet about Sands, The Stillbirth and Neonatal Death Charity. They were still a fairly new charity at the time, with a small office in London. All the people working for them had suffered the loss of a baby. That first phone call to them put me in touch with someone who truly understood how I felt. I didn’t have to pretend I was okay, I was able to speak freely and openly about the devastating feelings, about the anger, the guilt that it was somehow my fault, the weight of sadness that is never ending. I have made lifelong friends because we’re all part of this club that none of us wanted to join. Bereaved parents have a bond that is like no other. A shared knowledge of the pain and the depth of love we carry every day.
Another year, more miscarriages and then a wonderful, beautiful healthy baby boy, our beloved Jacob. Thank you, Megan, your precious gift to us.
Love lasts forever, but the grief changes. I used to dread the autumn. I still can’t hear ‘Wake Me Up When September Ends’ without crying. Time didn’t heal, but it made me grateful, so incredibly grateful for what I have. I try and take nothing for granted. I think the grief has made me feel more, so I smile more, laugh more, because I appreciate happiness with all I have. Now, I love the golden light of sunshine on beautiful autumn days, I love the turning of the leaves, I love the garden going to sleep, I love the white feathers that appear at this time of year.
So, I will be walking my 310,000 steps this autumn to raise money for Sands. They are a crucial charity that gave me unfailing help and continue to support bereaved parents. I’ve recently succumbed to an auto-immune condition which is causing muscle aching and fatigue, so call me a glutton for punishment! I’ll be taking each step in honour of all the babies that may have existed only briefly but left unfathomable love.
Blog by Jean Marsh
