Autumn is my favourite season and I will always remember that he was meant to be an autumn baby. He arrived, however, far too early but for me autumn will always belong to him. After the loss of our son, Wolfhart, I sought solace in the baby loss community and it helped me through the darkest of days, but I couldn’t find a journey like ours. I want to share his story, because he was here, he was beautiful, and to help another family feel less lonely.
We found out we were expecting Wolfhart on 1 February 2020. After thyroid issues and low AMH (1.1!) we were delighted (it made up for Brexit happening that day)! As I was older (40) we underwent NIPT testing. Another moment in history, we were in the waiting room before the ultrasound when the Taoiseach (the Prime Minister in Ireland) announced lockdown would start the next day. When I was around 11 weeks pregnant and with us working from home while homeschooling, we got a call from the consultant – not a good sign as “good” news is delivered by the receptionist. I was about to chair a Zoom meeting. I screamed for Ronan as I heard the consultant explain that our baby had Trisomy 21, Down Syndrome. I think I asked questions, I can’t remember. It was only an afterthought that I looked at the report to see we were having a boy. My husband Ronan’s first words were, “He will be loved”. But, nothing took away from the shock we felt in that moment. We were plunged into the unknown. Would our older two children be ok? What about the associated health difficulties? Ronan felt sure we couldn’t handle it. I had every faith that we could, but I was incredibly upset at the higher chance of heart problems. I asked myself questions I never imagined I would have to ask myself. Would he be with us for only a few years and pass away, leaving the older two bereft? Would he be made fun of at school? Would he need surgery?
We went in for definitive diagnostic testing. I am forever grateful they could not complete the test that day…the relief that we couldn’t do anything for the next four weeks brought me back from the dark. I could enjoy my baby and get my head around being given what was a very different journey to our previous children. I cannot imagine having to make big decisions within a day or two…I was simply in shock for at least a week. Looking back, this was the perfect gift. It gave us time. Our consultant was so supportive, and didn’t once suggest which route to take. We reached out to PADS, the Irish Down Syndrome Centre, spoke with parents of children with DS and I signed up for a Lamh course (like Makaton in the UK, a signing system often used with children with DS). I wanted him without a shadow of a doubt but we also wanted to prepare for any health difficulties. Ronan took a lot longer to come to terms with having a baby with special needs, and so dove head first into the research. But after some very brave soul searching we came together again to look forward to welcoming our son.
At almost 16 weeks pregnant our then 8 year old daughter was rushed into hospital with a severe bone infection. As she was being signed into the ward, with me promising I would never leave her side, my waters broke. Everywhere. I went into survival mode. I spoke with the team, hoping they would say “Ah, you’re grand, stay here”. Of course they didn’t. They ordered me straight to the maternity hospital when every cell in my body wanted to be with Edith. Ronan got friends to look after then two year old Gabriel. He dashed to Edith and I was signed into a cold hospital room (which I now know to be the “end of life” room) assuming everything would be okay. Very slowly the next day they let me come to terms with the fact that our beautiful boy would have to be born. My waters were infected and the process of his birth had started, but needed to be helped along to lessen the risk to my life. It was a horribly dark moment.
We tried our best to negotiate one child in hospital, our toddler luckily happy with close friends, and us, alone during a pandemic in that cold room preparing for the unimaginable. Edith is Ronan’s stepdaughter, and so her dad went to her hospital where she bravely coped with days of MRIs and scans and x-rays and blood tests. And Ronan and I prepared to say hello and goodbye to our son.
It took 24 hours. We spoke to him, I wrote him a poem and Ronan wrote a goodbye letter. We played some beautiful harp music (I am taken back to that room whenever I hear it). We told him not to be scared. I went to the bathroom and suddenly felt his little leg. This was it, I shouted “He’s coming”. It was so peaceful. I didn’t feel any physical pain. They brought our tiny baby to us in a little basket and he looked as if he were smiling. We spent precious hours with him then slept, in a sort of empty silence.
We left the hospital the next day, feeling the kindness of the team there and the continued support of the bereavement midwives. They organised his funeral. Edith came home after a week and after a joyous homecoming, we told the children about their little brother and they helped plan saying goodbye to him. We had his small funeral, with both children holding their new wolf teddies from him. I read to him; his first, last and only bedtime story (Guess How Much I Love You), making it last a lifetime of bedtimes. I read his poem. Edith wrote him a card and we buried it with him and with a photo of us, his family.
We named him Wolfhart. It means ‘travelling wolf’ in German and I loved the imagery of the heart of a wolf. In the days and weeks that followed, during pandemic life, me on bereavement leave and my husband made redundant, we spent our time in the woodland and mountains near our house on the outskirts of Dublin. Nature healed us. It was a beautiful time and I felt close to Wolfhart.
We couldn’t have visitors, but my mum and sisters in the UK kept in touch daily (so thankful for video chat!). A neighbour cried on our doorstep with me. Friends sent gifts, exactly as they would had he been born alive. One sent us food so we didn’t need to cook for that first week. I talked about him, announcing his birth to friends and acquaintances. I spent much of that time being thankful he chose us for his short visit to earth. Ronan was my rock and Edith and Gabriel were just wonderful throughout. He taught us so much and continues to do so.
The postpartum bleeding lasted 10 weeks and then seemed to settle. I waited for my cycle to return so we could try again. But it didn’t. Miraculously, I was pregnant again, which was terrifying. After a scary few weeks (including a huge day long red bleed in week 5 and several weeks of inconclusive scans) we did the same NIPT test. The consultant called again – this time telling me, as my heart sank, that they didn’t get enough fetal blood. A week later the receptionist called – we were having a healthy baby girl! It felt like such a bittersweet moment but I felt Wolfhart all around and slowly started to feel like I could enjoy this baby. Pregnancy after baby loss is so different, the innocence was gone.
Cordelia was born early, a month before Wolfhart’s anniversary. I was admitted to hospital with a bleed at 35 weeks (I knew I had placenta previa so was prepared). The same midwife who took care of me that first cold night when my waters broke with Wolfhart was there to welcome me to the admissions ward! The midwife who delivered him was there on the antenatal ward and I was given a bed closest to the room where he was born. I felt him everywhere. Cordelia was with us when we visited Wolfhart’s grave on his first birthday.
The children talk about him and we all feel at peace at his grave in the Angel’s Plot at Glasnevin Cemetery. There are toys everywhere and Gabriel loves to play! I still feel like I went on a journey to have a boy with Down Syndrome, and wonder what life would have been like had he lived. Thank you for visiting us Wolfie, I know you couldn’t stay for long but you are so loved.