Teddy’s story
From the start of our pregnancy, I’d been anxious because it was our first pregnancy. I wasn’t sure what to expect, and I struggle when things are unknown. When we had our 16-week midwife appointment and heard Teddy’s heartbeat for the first time, I felt like I could start to relax. From then on, the excitement quickly built. Just before the 20-week scan, I had another appointment with our midwife, just as an extra check-in, and I got to hear his heartbeat again. This was special because I felt him moving and kicking, and I’ll always feel grateful that I had that extra time with him in a non-clinical environment.
As I’d only just heard his heartbeat three days before the 20-week scan, I just assumed everything would be okay on the day.
I’m not sure how long the scan took, but I know that I didn’t think anything was odd. When the sonographer was finished, and I was still lying on the bed, she said, “As you know, this is the anomaly scan, and I’m afraid there might be a couple of issues. I can’t see their cerebellum in the brain.”
It took my brain a few seconds to compute what she had said, and then I broke down in tears and clung to my partner. The sonographer went to go and talk to someone at this point, and it felt like she was gone for such a long time. When she came back, she let us know that we were having a boy. I couldn’t fathom that an hour ago, I was just thinking about going back to work with my gender reveal items, and now we were in this position where the gender was the least important thing to think about.
From this point, everything moved fast, which I’m grateful for as I don’t know how we’d have coped with having to wait and ruminate. On the Tuesday, we had an appointment with foetal medicine, who did another scan. When they looked at the brain, they said they might be able to see a very small cerebellum, but it was hard to see. This broke my heart because I’d been wishing the night before that it had just not been picked up on the first scan, and it would be there on the next. We went into one of their counselling rooms and discussed what this meant with the consultant and what happens next.
The consultant explained that the impact on Teddy’s life lay on a spectrum. If it were mild, he explained that other parts of the brain might be able to compensate. However, if it were severe, then he might not be able to walk, would have issues with balance, emotional issues, severe learning difficulties and potential vision problems. The idea that I might be deciding based on such a broad spectrum terrified me, but it was explained to us that the next step would be an MRI and an amniocentesis to gather more information.
In the two days that we waited for our MRI, we constantly spoke about what life would be like if we chose to continue or not. It was very overwhelming, but I’m glad that we spoke to Jane from ARC at that time, as it was reassuring and helpful.
On Thursday evening, we had the MRI. When I entered, one of the people helping to do the MRI very jollily asked, “Are you having a boy or a girl?” Looking back, I know she was just being friendly, but at the time, I thought it seemed insensitive, and I think I’d only told one or two people that Teddy was a boy at that point. It took about an hour for the MRI to be completed. I could feel Teddy dancing in my belly, and I was just trying to will him to sit still for a little bit so they could get the images, and we could leave quicker.
The radiographer spoke to us straight after, which we weren’t expecting, but it was appreciated, so that we knew what to expect a bit more in the consultation the day after. She said she’d only seen a few cases like this in the thousands of MRIs that she had done. She explained that, from what she could see, we would be looking at the more severe end of the spectrum. She also saw a separate issue: a squiggly line at the back of the brain, which most likely meant that Teddy would have had epilepsy or vacant episodes on top of the issues he would have had already. She said that having multiple separate problems likely pointed towards a genetic issue (a mutation during conception, rather than something inherited), meaning that if we were to continue, he would likely develop more problems.
When we went back to foetal medicine the next day, we had the amniocentesis and then had a chat with the consultant. For me, one of the things that helped my decision was when I asked if he would need help with feeding. In my head, I meant would he need support picking up his cutlery because we’d been told coordination would be an issue. The consultant said it’s quite likely that he would need a feeding tube. We spoke about what life would be like for Teddy and how he would probably need to be in and out of the hospital regularly for check-ups and need constant care. I work on a children’s ward, and personally, I felt like I couldn’t put Teddy through a life of permanent hospital visits.
We got back from that appointment emotionally drained and knowing that we were probably going to make the decision to TFMR (terminate for medical reasons). We then headed straight to see our community midwife because I just wanted to chat to someone who knew us and our background. I’m so glad that we did that because it felt like someone was validating our feelings, and it was good to just explain our thought process.
Over the weekend, we continued making memories with Teddy. We had been reading Winnie the Pooh at around the 15-week mark, so we continued to do that together. Previously, I’d read Teddy a book called I’m Sticking with You. When I read it again to him over the weekend, it took on a new meaning.
The following Monday, a week since our scan, we rang to confirm we wanted to TFMR. Once we’d made the decision, I wanted to get it done fast because I was conscious that we were nearing 22 weeks, after which his heart would have to be stopped prior to birth.
We were booked in for the following Thursday, so in the three days we were waiting, I focused on making some decorations for Teddy’s room. I just wanted it to look a bit more friendly and wanted to feel like I’d done something nice for Teddy. I also collected some pictures of us we’d taken since finding out about our pregnancy to put up in the room.
By the time Teddy was born on the 13th November 2025, it had been such a long day, because I reacted to the tablets and had been vomiting from the get-go. I am grateful that I still got the chance to give birth and experience what that was like. When I was explaining what I wanted beforehand, I said that I didn’t think I’d be able to hold him and was worried about what he would look like. Once he was here, I knew that I wanted to see him, after he had been cleaned up and wrapped in his blue and white blanket.
When we first saw him, I thought he was the most beautiful baby boy I had ever seen, and he looked incredibly peaceful. He looked all snuggly with his ‘ducky’ that we kept with him throughout. We ended up spending two days in the hospital with Teddy, and I’m so grateful that we will always have those memories of him and cuddling him as much as we could.
Whilst we were in the hospital, we were offered some memory-making keepsakes. Initially, I was unsure if I’d want these, but I’m glad that we said yes, as we now have things to remind us of Teddy. The midwife who delivered Teddy did his hand and footprints for us. We now have these on a bauble for Christmas, and I have his footprint on a bracelet. A photographer came to take pictures for us, which was special because it was the first time that we held his little hand, with his fingers wrapped around ours.
Once we were back at home, we got support from our community and bereavement midwives. I know not everyone might be lucky enough to have a bereavement midwife or want to chat to one, but for me, it was reassuring knowing that I could say what was on my mind and they would understand. They were so open to looking at pictures of Teddy, which made a huge difference, because I felt like he was acknowledged.
For us, funeral planning gave us a focus, and it felt like something positive we could do for Teddy. It felt like our time to introduce Teddy to some of the people that would have been a part of his life and celebrate how much of an impact he’d made on us, in such a short space of time. We chose to read him a letter, two stories and chose songs personal to us, explaining the significance as we went. We also picked a local lady for the flowers, who personalised them with little bees and Winnie the Pooh teddies for us, just so it looked a bit friendlier.
I don’t want Teddy to just be remembered for his diagnosis; I want him to be remembered as our first baby who gave us so much hope and made us a mummy and daddy. He’s made me feel so brave, whether that’s when I had him in my arms or now, when I look at pictures of him. He will always be our beautiful baby boy.
“Because I knew you, I have been changed for good” – For Good, Wicked.