Carmel’s Story

We were expecting our second baby and we were overjoyed. The 12 weeks scan had been perfect. My bump was getting bigger, I had moved into maternity clothes. I was over 21 weeks pregnant when we attended the anatomy scan. The previous day I had printed a list of what this scan measures and identifies. I half suspect the purpose of bringing the list was that if I expected the worst then it wouldn’t happen, my warped logic.

My name was called and we went to the little room with our sonographer. It didn’t take long for her to make some concerning comments about the baby’s head. A feeling of panic washed over me. I forced myself to ask her ‘is there something wrong or is it just the way the baby is lying?’. ‘There is something wrong’ she responded. At that point my husband was standing up holding my hand, tears were streaming down my face. A second sonographer was called in. She looked at the scan for barely a moment, put the transducer away, addressed us directly, compassionately and said ‘I’m so sorry, this is just the worst diagnosis, the little skull hasn’t formed.’ 

We were moved to a tiny little room to meet with the Fetal Midwife. I clung to my husband’s arm, tears steaming endlessly. I can’t recall when the word fatal was first used but it didn’t take long. Anencephaly…’s fatal…….a fatal fetal abnormality……there’s not a doctor in the world who can fix it….  Our baby would not survive outside of my womb. Before the midwife even had to say it I knew what our options were. I could continue with the pregnancy or I could travel to the UK for an abortion.

The word abortion was never used by anyone but it hung unsaid in the air. We had to wait for a Consultant to confirm the diagnosis. We took a walk outside in a garden and sat on a bench. I looked at my husband, I knew he was waiting for me to say how I felt first. I told him, fearfully, almost apologetically, that I didn’t think I could go full term, I just didn’t think I could do it. That was my instinct. I looked to him for approval. He nodded, ‘of course not’, he said with complete assuredness. We cried. We returned to the hospital where the consultant confirmed the diagnosis of Anencephaly. She also told us we were having a little girl. I couldn’t take my eyes off the scan, watching her kicking and tumbling.

When we got home our heads were still spinning. We decided to call our little girl Kate. Kate Annie after my Nana. We lay on the bed crying. We picked up our two year old daughter from crèche. We needed to hold her close. That evening and over the coming days we read every story we could find about parents who decided to go full term. We wanted to be sure we were making the right decision. Was there something we were missing? We came away from each story with nothing but respect for those parents. No matter what decision you make it takes such courage. But it also confirmed that our initial instinct was right: it wasn’t for us.  

Our hospital had given us the details for Liverpool Women’s Hospital in order for us to get a second opinion on the diagnosis. We made contact only for them to tell us they couldn’t accommodate us. They were full. At that point we were left alone. It was us and Google. We called several other hospitals and clinics in the UK with no success. I started each phone call by saying ‘I’m desperately looking for help, can you please help me’. We wrote out our questions. When can you accommodate us? Can our baby be cremated? If so can we bring her ashes home? No, said one hospital, the babies are cremated with other hospital waste, the ashes are not returned to families. 

Guys Hospital in London had a different suggestion. At 22 weeks gestation, a termination for medical reasons is a two part procedure. Part one is an injection that stops the baby’s heart beat. Part two is induction of labour. Come here for part one, they said, then go home and deliver your baby in your own maternity hospital.

Was it allowed? Would our hospital take us? Was it safe? We didn’t know who to ask. Eventually we spoke to TFMR who gave us lots of advice. We understood that if we go to an Irish maternity hospital and they find there is no heartbeat they will induce labour. We decided to go. Flights and hotel were booked for the next day. Family members were scrambling over who would look after our daughter, anything to help us.

So we travelled. It’s a verb that has taken on more meaning than I ever thought possible. It was so hard to comprehend how we had gotten here. Kate was kicking and tumbling inside me. Yet we were traveling for an abortion. It was surreal. We arrived in London like ghosts.  We were treated with so much dignity and respect at the hospital. It was nearly hard to bear. They confirmed the diagnosis. Even we could see it in the scan. We asked them so many questions as we didn’t know if it would be safe to ask anyone in our own hospital. We walked back to our hotel and we spent the night planning Kate’s funeral service and crying. I treasured every kick and bump knowing it would be my last night with her.

The next day we walked and walked. We had started writing a letter to Kate, it gave us a focus. We arrived at the hospital and I was terrified; I didn’t want to say goodbye. I didn’t want this at all. But we both knew it was the only option for us, for our family. It is the hardest thing we have ever had to do. I forced myself to breath in order to keep calm, to stay still for the consultant, the whole time with tears streaming down my face. I wept for Kate, for us. But at no stage did I feel this was the wrong thing to do.

We sat in a waiting room afterwards. Shock had set in. They scanned me again. ‘Your little poppet is asleep’ they told us. We left the hospital. It felt so strange to me that it was still daylight. We had a flight to catch. I so desperately wanted to get home. My husband guided me to the underground, to the Heathrow express, through the security check, eventually onto the plane. I cried silently the entire journey home, completely dependent on my husband to get me back. ‘She’s just asleep, she’s just asleep’ I kept repeating myself. 

Someone told us that after we did what we did in London we would have to ‘present ourselves’ at our own maternity hospital. Those words conjured up images of disobedient children who had broken the rules. And I suppose we had. It made me very fearful. Who could we tell the truth to? If they knew the truth, how would they treat us? Would anyone be unkind? I didn’t think I could handle it if they were. We talked through how we would deal with it if it did happen. Neither of us are naturally confrontational but we were under severe pressure and so vulnerable. 

We were honest about what we had done. It was suggested by the Consultant we met not to put our notes from Guys Hospital in our file as ‘you don’t know who you will meet’. In the end we were mostly treated kindly and with sympathy. The fear of how we would be treated was unfounded in our case but it had an enormous impact on us. I didn’t sleep the whole night before mainly because of it.  

The next day our focus was on delivering Kate peacefully, it was all we could do for her. We wanted to treasure the time we had with her. The induction finally started to kick in around 9pm. It was an easy birth and Kate arrived at 2.45am. I had been told to expect no joy in cases of still birth. But there is joy. It’s a different sort of joy certainly. A much sadder joy. But we held our baby Kate and marveled at her fingers and toes.  She lay in the cuddle cot in between us for the rest of the night. We took her out to hold her, to dress her, to kiss her. The midwife took her hand and foot prints for us to keep.

Later the next day we walked her to the chapel and we said goodbye to her. It was so painful but there was also an element of relief, we had come through it, she was here.

Two days later we held a service for her in the chapel, our families all there supporting us. The Celebrant read out the letter we had written to Kate, which celebrated her and told her how much we all loved her. We drove to the cemetery on that sunny morning and laid her to rest.    

We carry our grief with us every day. We go to support groups now and tell them ‘we travelled’. You don’t need to say any more, everyone knows what that means. It’s through attending those support groups that we realise how lucky we are. Yes, we travelled to the UK but we also got to come home to deliver Kate and that has meant everything. Had it not been for that our families could not have attended the service, she would not have been buried in the cemetery, a short walk from our home. There is so much healing in this. And I’m so sad that other families are deprived of that. So sad that they have had to leave their beloved babies in foreign countries, or have had to navigate airline security hoping they won’t need to explain what they are carrying, or await a courier to arrive at their doorstep with their baby’s cremated remains. Those experiences leave scars.

I believe that on receiving such a diagnosis you should fall into a supportive network driven by healthcare professionals where you receive judgement-free counseling to help you understand your options. But you don’t. And it’s a very lonely place where you have to make desperate phone calls to foreign countries, plan logistics, live in fear of how you might be judged.  I have nothing but respect for parents who decide to continue with the pregnancy after such a diagnosis. But parents like us who cannot, deserve to be respected too. Kate was very sick and that is no ones fault. We hope someday we will grow to accept our loss. However, we cannot and will not accept that in our time of greatest need our country turned us away, could offer us nothing. This needs to end now. The 8th Amendment must be repealed. Please support us and families like us in ensuring it is.

Can you think of someone to share this story with?