Thursday

February 2024

Thursday will always be the day that it all came crashing down around us. The appointment was at 12:30 and I had a lot to do that morning but nothing went to plan. I was anxious. Your sister was poorly. Preschool rang me and I spent time trying to make sure she was ok and organise a GP appointment for after our scan. I didn’t know how bad our own appointment would be and how much it would affect the rest of the day and the rest of our lives.  

We sat in the waiting room, with the fish tank. I was replying to work emails on my phone, your daddy was replying to work emails on his laptop. We both kept ourselves busy. I was excited about seeing you again, getting another photo and having a specialist tell us that everything would be ok. I didn’t expect her to tell us that everything wasn’t ok and would doubtfully ever be.

She spent a bit of time looking at your other organs before she looked at your heart and she gave nothing away. I laid there looking at you, listening to your heartbeat, waiting for her to tell us what a perfect baby we had. Again, she asked me to get up and go for a wee, to get you in a better position. I went happily to the loo, had a word with you, did a few little jumps in the toilet and secretly told you to let her take a good look at you. It took quite a while for her to look at everything and when she switched the monitor off she said “There is significant variation in both sides of the heart”. Ok, I thought, that didn’t sound too bad. Whilst I was lying down she said you had a large VSD. This didn’t seem like a big issue – I have a VSD and I live a perfectly normal life, so I wasn’t worried. “I’d like to refer you to fetal cardiology in Bristol. Can you get there yourselves?” “What, now??” was my response. No, she said, handing me the blue tissue to wipe myself off. She sat up the bed and then started to explain.  

If I am very honest, I don’t think I was listening at first. I hoped your daddy was because I felt like I didn’t need to listen to this. I felt like she was talking about someone else’s baby. Not mine. It all felt like it was happening to someone else, so I don’t think I listened properly. I don’t remember the order the information came but it wasn’t until my trousers were done up, I was sitting on the end of the bed that I started to pay attention and ask questions. She kept saying that she couldn’t see your aorta. GCSE Biology had taught me enough to know that this was indeed “significant”. She mentioned the left side of your heart not being very big. I understood this was also "significant". I already knew you would need surgery for the hole in your heart, unlike me. That was significant. She kept saying she was sorry. She said it three times. She offered us a cup of tea, which was probably when I started to understand that “significant” actually means “serious” or “severe”. She kept apologising because she couldn’t see enough today to give us clear information or clear answers: we needed to see the specialists for that. I asked if they would tell us she was wrong. Unfortunately not. She said she could see enough to see that this was a very serious heart defect? Condition? Variation? I don’t remember the word she said. She then started suggesting some surgical options that might be offered to us, depending on what they could see that she couldn’t. I was starting to understand at this point. Surgery. Heart surgery.

I then asked the question I never thought I would ask: “What’s the best case scenario for us right now?”. I was told I would have my care taken over by Bristol and I would deliver you up there, not here. You would require open heart surgery very soon after birth and then an extended period of care there to recover. She mentioned palliative care, should it not be possible to operate. I knew that word. She felt your heart problem was somewhere between two diagnoses: one being better than the other, but still offering a “best case” that wasn’t very positive. She gave us some information to take home about the procedures, a charity we could contact and she mentioned the word termination. This bit hit me like a punch in the face. I couldn’t believe a specialist was saying this so soon, but no one says that unless it’s a possibility. "This charity can help you if you decide not to continue with the pregnancy". I felt like the ground was shifting. Again, I almost looked around the room to see who she had said that to, not quite believing it was me. We were then given some very sage advice: to be wary of who we discussed this with. Everyone would have an opinion, but it was important to get specialist advice. Wait until you speak to the specialists: let them answer your questions, she said. 

I then asked what we should do next. She offered us the 'special room', to sit in and gather our thoughts before we went home. She told us not to go back to work: we needed to go home and be together.  

I haven’t been back to work since.  

The following Thursday, I entered the same room and lay on the same bed, to have an amniocentesis. There are risks with this procedure: you can have a miscarriage. This seemed a worthwhile risk to take because we knew by now that I couldn’t continue growing you. It had only been a week since I was told about your “significant” heart issues. I wanted to know more. I wanted as much information as possible to know why this had happened to you. Why you?? It was very clinical, and also very sad for me. I knew that this wouldn’t change the outcome of our decision. I knew that it wouldn’t save you. It just might help your anxious parents to understand why we were put in this awful position, why we were made to “choose” to stop growing you.

We were at the hospital so early, squeezed onto the start of Helen’s busy day. She talked to us kindly about the results she had had from Bristol. She explained what she understood and said she would push them to see us as soon as possible if seeing them again would help our decision. But it was already made, we were just struggling to say it out loud. I couldn’t confidently say “I want to end this pregnancy”. It couldn’t say that without the most intense pain in my own heart.  

We sat in the special room that we’d been offered and denied the previous week. I asked questions about how to terminate my pregnancy. I understood new things. They took blood tests from both your daddy and I, so we could share as much DNA information as possible. We hoped it would help us find peace.  

We were in the hospital for what seemed like ages that day. There were questions to ask and conversations to be had. Conversations I didn’t want to have, but needed to. Everyone was so kind and so respectful. I understood I needed to give birth to you in that hospital to be able to give you the most dignified, respectful end to your very short life possible. It broke my heart. Again and again. I just couldn’t believe an indecisive person like me, was making the hardest decision I had ever made. I couldn’t wait any longer. I just couldn’t. I went home on my own and rang your Granny.

I’d decided to stop growing you and I was devastated.