Wanting to see her was such a powerful feeling. I've never felt anything like it.

I had my first miscarriage in 2021 at 10 weeks and it was really difficult. We’d been so very happy to get that positive test and miscarriage wasn’t something we’d really worried about so, when it happened, it was such a shock.

There was no real support, just some leaflets, then I was sent home to rest and told I’d be fine. You’re left wondering if it will happen again.

We tried again and, a few months later, fell pregnant but had a missed miscarriage. I didn’t even know there was such a thing. We’d gone for a private scan at 9 weeks and they said our baby had died at 6 weeks.

I felt like my body had failed me - hadn’t even told me that there was something wrong.

We got a referral to the recurrent miscarriage clinic where tests found out I had sticky blood so, the next time I got pregnant, I took progesterone and aspirin from early on and I think it made a difference.

My pregnancy with Hope

Hope was a honeymoon baby. We married earlier this year, then we had a baby on the way which was lovely.

A reassurance scan at 6 weeks showed her little heart was beating. Then at 12 weeks we found her nuchal translucency (NT) measurement was larger than normal, 5.5 when it should be 3.5 or under. We didn’t know what that meant, nobody explained, they just referred us to foetal medicine.

So we went home and googled it, which is never good. At foetal medicine they said there was a high probability Hope had Down’s syndrome. They took fluid from my belly and, at 15 weeks, we found out Hope actually had Turner syndrome. It only affects baby girls, about 1 in 2,000, and it mainly affects their reproductive and hormonal systems. Girls with Turner syndrome only have one normal X sex chromosome, rather than the usual two.

We researched and found it would mean a lot of appointments through her childhood but that children with Turner syndrome can and do have very good lives, and we knew we’d do anything for our little girl.

Our devastating news

Then, at the 20-week scan, they found out Hope had developed hydrops fetalis, fluid accumulated around her lungs and heart, they also found she had 3 major heart issues. 

That 45 minute scan was so difficult, the cardiologist kept asking, "Didn’t anyone tell you?" but nobody had. We were in complete shock. 

The cardiologist explained her heart could be fixed when she was born but that he didn’t think she’d get to full term. We hoped she could get to 24 weeks so that perhaps they could help her.

A couple of days later the foetal medicine consultant was very honest with us.

Hope’s condition was severe and she had only a 1% survival rate. I didn’t know what termination for medical reasons (TFMR) meant but the consultant explained it all quite well. I could miscarry, also my life was in danger because I was mirroring Hope’s fluid retention and was at risk of pre-eclampsia. Jamie said he couldn’t lose us both. So we made the worst decision of our lives, to let her go, and our world fell apart.

Spending time with Hope

Two days later I went to give birth. We were taken to a special room, the Butterfly Suite, and they induced me. As I was going through contractions, through birth, all I could think was that we would not be taking this baby home. That’s unexplainably hard to deal with.

When she arrived I felt sad, in shock and exhausted. Wanting to see her was such a powerful feeling, we couldn’t wait, and when they passed her to me I’ve never felt anything like it. She was just 300g and so beautiful. I was looking at her, Jamie looking at us both and it was so sad, but also happy and special.

Wanting to see her was such a powerful feeling, we couldn’t wait, and when they passed her to me I’ve never felt anything like it. It was so sad, but also happy and special.

It was a shock to see how unwell she was but it confirmed to us that we’d made the right decision for her.

They brought a cold cot so we could spend some time with her and we did hand and foot prints and took loads of photos. I remember thinking it was so strange when the midwife came in and said hello to her, told her how beautiful she was, but it was so nice they did that because it acknowledged our daughter was here, even if she couldn’t stay.

We spent the night with her but we could tell she was changing so I said to Jamie I thought it was almost time to say goodbye, he burst into tears but agreed. So we wrote little notes to put in her cot and played You’ll Never Walk Alone, then said our final words and left the room before the midwife took her away. It was so hard, knowing we’d never see her again.

We went home with our memory box and the house felt so empty, we both felt so lost. It’s so hard to know who to turn to, you feel completely alone, like nobody could understand the pain you’re in. I also felt a lot of guilt, kept apologising to Jamie that my body had failed.

Support after loss

The bereavement midwife called a couple of times but it felt impersonal, like a tick box exercise. I’d found Tommy’s in my first pregnancy and the website was so accessible, everything written in layman’s terms. I went back after losing Hope and also joined the baby loss Facebook group which is fantastic. 

It’s been extremely valuable communicating with other bereaved parents, a lifeline really. I don’t know where I’d be without those people.

We wore purple and butterflies for the funeral, both associated with Turner Syndrome. It was a difficult day but, it meant we could collect Hope’s ashes and finally bring her home which meant so much.

When I went back to work I was clear that if anyone wanted to talk about Hope I’d be happy to do so. She’s my daughter, I want to talk about her. 

She’s my daughter, I want to talk about her. 

I’m just so glad Tommy’s were there for me at the time I needed it most, it’s a community of people with an unspoken understanding. You can be open about how you feel and that’s so important - we shouldn’t be ashamed, we shouldn't feel we have to hide our grief.