On November 23rd 2017 our third baby, Luke Spain, was born sleeping peacefully. He died on his due date when he was exactly 40 weeks old.
We have written below an account of our experience that has brought us in contact with A Little Lifetime Foundation (ALLF). ALLF is a wonderful charity that provides support services to bereaved parents by organising support groups and meetings, providing counselling, workshops and events - to name but a few. They have spent years advocating for parents and continue to work with health care professionals. What I found that it is a very friendly, open organisation, one that you immediately trust and and can turn to for support.
In early June 2017 I was 17 weeks pregnant with our third baby when he was diagnosed with a condition called Trisomy 18 or Edwards Syndrome - a chromosome disorder. We were told that the condition is considered fatal and that it was most likely our baby wouldn't survive the pregnancy, or if he did, may only live for hours or days.
We found out at the time that our baby was a boy and shortly after we named him - Luke. The weeks following the diagnosis were not easy. We attended Holles Street hospital every two weeks and symptoms of Luke's condition were starting to become evident. Every scan bore more bad news and our consultant didn't expect Luke to survive for much longer than a few weeks. Our hearts were breaking knowing our little boy was struggling.
However, after a few weeks everything changed. The problems that were causing so much concern had all but disappeared. It was such a wonderful turn of events - we could suddenly starting planning the rest of the pregnancy and most significantly - hoping we would meet our little man and spend some time with him! And we could start talking to our other children, Charlie and Isabelle, with more certainty - "will baby Luke be still here for my birthday?" - "Yes, we think he will!"
As the weeks went on I became very sure that that Luke would be born alive. He was getting bigger and stronger all the time. He was kicking non-stop. I felt an incredibly strong connection to him like I hadn't felt on my other pregnancies.
We spent a lot of time together as a family during our pregnancy with Luke - we went on days out and trips away but also spent lots of 'normal' time together. In the house, garden, going on walks, to the woods, to the playground, to the park etc. All the time the five of us spent together when Luke was with us felt incredibly special and those times we treasure and are so grateful for.
Charlie and Isabelle constantly kept Luke in the conversation. We were amazed by the bond they had with him. Robbie was no longer allowed to read the bedtime stories as Luke had to be there in the bed with the other two and he was often treated to a massage by four little hands. Isabelle was exceptionally generous, regularly jabbing her dodie into my bellybutton and, at the cinema, Charlie insisted I lift up my top so Luke could see the movie! They also collected so many things for Luke to take with him when he left us - little teddies, minions, fairy dust, a piece of Charlie's birthday cake! To name a few. But there were also very sad moments... quiet whispers to the bump during early morning cuddles - 'I don't want you to go to heaven baby Lukey... I want you to stay here with me'.
As the due date was drawing near Luke was getting stronger and stronger. I remember a feeling of peacefulness which I didn't want to end. I wanted to keep Luke safe where he was forever. However, I was also full of hope and was getting very excited by the prospect of finally laying eyes on our baby. The final two scans before Luke's birth showed that he was putting on phenomenal amounts of weight - there were excited discussions about the birth and all the arrangements.
The days leading up to Luke's due date we started to get concerned about his movements and we went to the hospital. I knew we were so close to the end but I couldn't even begin think he could be gone. And he wasn't. Strong heartbeat. We went home.
On the morning of Luke's due date, we decided to go back to Holles Street - to put our mind at rest for the day, we said. We were filling our wonderful midwife, Heather, in on his kicks in the early hours of that morning but our chat faded away as she put the scanner to the bump. Silence. And then the soft words "I'm so sorry..."
Luke was born two days later on November 23rd 2017. Charlie and Isabelle came to see him in the hospital and we will never ever forget their little faces as they rushed in to see their little brother. They were beside themselves with pride and excitement.
We brought Luke home with us for the two days before his funeral.
Luke is buried in Glencullen, Co. Dublin and you can see the Great Sugar Loaf mountain from his little spot. We call this 'Luke's Mountain