Blog

By Sharon Bridges

During my mentoring session with Michelle Every, facilitator of Supporting Every Birth, Michelle suggested that I write an article on the experience from a grandparent’s point of view. Around this same time, my daughter bravely made a Vlog offering support and sharing her own experiences, so I felt this was a suitable subject for me, following the loss of my first grandchild, Cillian.

Cillian was a little blessing we were told was on his way on Christmas Day 2019. I had lost my daughter Sophie in 2018, which made Christmas a difficult time, as it was Sophie’s favourite time of year. My older daughter, Hannah, had been planning to start a family in 2018, but following the loss of her sister she decided to wait until we were in a better frame of mind to welcome and nurture a new life, so this news was indeed very special. Hannah was only around the 6 weeks stage, and a bit nervous telling family, as my niece had sadly suffered a miscarriage of her first little girl in November 2019. Sure, what could possibly go wrong, when we had already been through so much loss? The 12 week scan showed everything appeared to be going well, and the 17 week scan confirmed this, but there was a brief mention of a little fluid on the kidneys. The hospital staff were more concerned with adhering to Covid-enforced restrictions to answer the questions of an anxious first-time mother, so Hannah decided to have some private scans carried out. Again, these showed no major cause for concern, and revealed that we were expecting a little boy.  A small heart defect was indicated, along with the fluid in the kidneys, so Hannah was referred to the Foetal Medicine department in the Royal Victoria Hospital, which is really the highest level of care on offer in Northern Ireland. The specialist could still find no reason to worry, and felt that perhaps by delivering early and having a look at the heart, Cillian had a good life ahead of him.

How did that go so wrong? At 32 weeks, Hannah went through an amniocentesis to put her mind at ease before being induced, and at his point we discovered our beautiful little man had Patau’s syndrome, Trisomy 13. None of us had ever heard of this. We were familiar with Down’s syndrome, as I have a cousin who has had a wonderful 45 years of life so far with this condition, and that was the reason I had advised against this invasive procedure. If our worst-case scenario was Down’s syndrome, our grandson would still be so loved and a welcome member of our family. We were not prepared for this news in any way, and it felt like a horrible, cruel trick. We were given this news on a Wednesday, and told Hannah would be induced on the following Saturday. I still believe that where there is life, there is hope, and on those nights I stayed with Hannah before she went into hospital, we made memories with her little bump. We told him how much we loved him and wanted him to be part of our family, although Hannah and her husband Paul did not want to be given any false hope. My heart was completely shattered, but I kept it inside when I was with them, but when I was alone in the middle of the night, that is when the tears came.

Saturday the 27^th June 2020 arrived, and Hannah and Paul had to report to the maternity hospital alone. Throughout lockdown, Hannah had to attend all her maternity appointments alone, but there was no way was I letting her face this unsupported. Having been induced 3 times myself, and also working in a maternity hospital, I was aware that we were probably in for an arduous journey of days, rather than the hours they were both expecting. I felt sick all day waiting for news, but it was only when the night staff were on duty that I was allowed to join them at the hospital. It was a horrible stormy night, as if Belfast was offering me her sympathies, but I made my way to the special Snowdrop room, which would be my home for the next few days.

That first night felt like it went on forever, as the niggling cramping of early labour began, but it was evident there was not much progress to be made. I guess that’s when my doula brain kicked in, and I encouraged Hannah and Paul to get some sleep.  The last thing you will feel like doing is eating and drinking, but it is vital that you all keep your strength up and stay hydrated. The staff were amazing, every one of them, who treated us with such compassion and empathy. Sunday was another long day, and between us we decided Paul should go home overnight for a proper rest and meal, while Hannah and I had our last bonding time with little bump, watching silly comedies that reminded us of happier times with Sophie.

Our perfect, precious little Cillian arrived and departed this world on Monday 29^th June, born sleeping, still warm when the midwife handed him to me. It was surreal, being handed this beautiful little boy by someone who said ‘I am so sorry for your loss’. I wanted so much to try to resuscitate him, as I ached so much for him to breathe, that I put my mouth over his tiny mouth and nose, just waiting for a sign of life. I longed so much to hear those first little cries, but this was not to be, Sophie had already welcomed her little nephew to her as he entered the world. As Hannah and Paul comforted each other and expressed the rawest of emotions, I held Cillian to my heart and allowed one tear to escape, before reuniting him with his mummy.

The Snowdrop room in the Royal Victoria Hospital had been set up in 2018 by a family who had gone through this life-changing experience, and although it is in a maternity hospital, it is separate from the labour wards and delivery rooms. We had a sacred place to spend as much time with our special little man as we needed. I won’t go into all the sentimental things we did as it was personal to us as a family, but we were so thankful that we had that time with Cillian, and he was treated as a person in his own right by all of the wonderful staff, who not only looked after Hannah, but myself and Paul also.

My reason for sharing this with you is really just to give you a little background on our family dynamic, but I would like to share some suggestions to any grandparent who is facing the same scenario. Yes, you want to scream, and cry, and curse, so do it, when and where appropriate of course! Your child needs you to appear strong and calm, no matter how sick you feel inside. Your child is still, and always will be, your child, so you place your own pain aside and care for them first. Be there. I was told I may not ‘be allowed’ into the hospital, but no force on this earth would have kept me away. Make your memories, before and after the birth. That little heart is still beating, those little ears can still hear you and recognise your voice. Believe me, you will thankful that you did. Acknowledge that tiny life as part of your family. One thing that particularly touched me was a text message from my own mother, saying ‘I am so proud to be his great grandmother, and I love him’.  This also reinforced in me the assurance that your mother is, and always will be, your source of strength, and in her eyes you are forever her child. You may want to consider what you would like to dress the baby in, or put in the cot with them, but the hospital staff were a great help to us as we had not really given this a lot of thought. We picked a little outfit for Cillian, and the staff gave us a beautiful memory box containing 2 little blankets and teddy bears. One set went with Cillian, and the other stays with us. I have a ring that I had made containing Sophie’s ashes, and I placed this in his little hands overnight, so know it has an extra special meaning to me. Take photos, lots of photos. These will be all you will have to look back on, so make the most of every opportunity. It is not as morbid as it sounds, trust me.

Of course, there are practical things that need to be considered, such as registering the birth and death, or receiving a certificate of stillbirth, and arranging a funeral. Again, the hospital staff took care of so much, and we are eternally grateful for their support. There is so much more I could share, as a mother, a grandmother, and now a doula, but we experience every moment in our own way, and our journeys are all unique. Rest assured, you will get through this, your child will get through this, and there will be happier times ahead, but you will always have that little angel tucked away in your heart.

Cillian showed me that my calling was to become a doula, and I intend to offer my services to any woman facing this experience, who may not have family support around her. I will honour his memory, give him this legacy, and breathe the meaning into his existence that I was unable to breathe into his little body, and he will always be my first grandchild.

For Cillian Noel O’Gallachoir, 29^th June 2020.

Further information and support:

SOFT UK: A charity providing support and information to parents of children with Trisomy 13 (Patau’s Syndrome), Trisomy 18 (Edwards’ Syndrome) and other genetic differences, before and after birth. https://www.soft.org.uk/

Sands: A charity which supports those who have been affected by stillbirth and neonatal death. https://sands.org.uk/

Miscarriage Association: A charity to support people affected by miscarriage: https://www.miscarriageassociation.org.uk/

Supporting Every Birth: Nurturing Birth’s interactive workshop created for doulas and birth workers looking at supporting both clients and themselves through all birth journeys including baby loss. https://nurturingbirth.co.uk/retreats-and-workshops/supporting-every-birth/