Amy’s story

I couldn’t believe our luck when I saw the faint line on the pregnancy test. I had rushed in from work and ran upstairs, quickly telling my husband I was about to take a test. He was surprised I was taking one so soon. But we were due to go to Chester races the day after, and I didn’t want to risk anything with the pregnancy if it was positive. And to our delight, it was.  

We told all our family, and they were all so happy for us. Our little girl, Florence, was especially excited to become a big sister. We had an early 8-week scan and the regular 12-week scan, which showed us everything was looking perfect. I suffered really badly with nausea and the occasional sickness. I kept telling myself this was positive, and I would suck it up until baby was born. Pregnancy makes me very anxious, and I worry about all situations. Despite this, no amount of worrying could have prepared me for that 20-week scan.  

I was working on the day of the scan and nipped off to meet my husband. I’d been into my work office beforehand, saying how nervous I was. I tried to calm myself as I was still feeling nauseous and I could feel baby kicking away. My name was called, and we went through to meet the sonographer. I lay down on the bed, and tears rolled down my face when we saw our little one moving around on the screen. I thought ‘everything is going to be ok’. I could hear the sonographer saying different limbs and structures, saying they were fine. I couldn’t believe it. Everything was definitely going to be ok. Until it wasn’t.  

The scan finished. ‘Amy, I have some concerns over your baby’s spine.’ I couldn’t believe these words were being said to me. We were told our baby also had a foot deformity, and there were concerns regarding their kidneys. We were told they were suspecting spina bifida. We were taken to a private room, and I broke down. I instantly thought that this was my fault because I hadn’t taken my vitamins every day. We were referred for a fetal medicine appointment, which was three days later. It was a long three days.  

During the fetal medicine scan, the spine and foot abnormalities were confirmed. The consultant then proceeded with the rest of the scan. Our baby was moving around on the screen, and I thought how can this be happening. The silence during these scans was deafening. At the end of this scan, when we thought things couldn’t be worse, it appears they were. The consultant told us that she thought our baby had VACTRL syndrome. She could not see the baby’s anus, their kidneys were echogenic, they had a limb deformity, and you couldn’t even see their spinal process fully due to the deformity. Again, our hearts were shattered. How could this be, when I could see our baby moving on the screen and feel them kicking around in my tummy?   

We were given the option of ending the pregnancy, as our baby’s quality of life would be poor and more problems could arise the longer the pregnancy progressed. We were told we would not know the full extent of their health issues until they were born. We were given another fetal medicine appointment at another hospital for the next day. We were also signposted to ARC. I initially thought why would I need this stuff; we aren’t ending my pregnancy. I then read other people’s stories of having a termination for medical reasons.  

Another appointment, more waiting. Another consultant telling me that the baby I was carrying, who felt so healthy, had so many health problems. They offered me an MRI scan and amniocentesis, but ultimately, regardless of those results, our baby would have had a poor quality of life. They made me an appointment for the following week, but I didn’t need it. The next day, I called our fetal medicine department to tell them we had decided not to continue with our pregnancy. This was the hardest phone call I’d ever had to make.  

We were told to come into the hospital the following day to take the first lot of medication. We then returned to the hospital a couple of days later to start the induction process.  

Thankfully, our hospital has a separate section attached to the delivery suite. The rooms are called the forget-me-not rooms. They are far enough away so that we couldn’t hear other women in labour and newborn babies crying, but close enough in case there were any complications throughout the delivery.  

When we walked into the room and sat on the sofa, we both cried and held each other. We never in our wildest dreams thought this would be where we would be meeting our baby. Our midwife was incredible. She somehow made the most awful day of our lives feel slightly less painful in the way she took care of us. I had two lots of the pessary medication. The contractions I had were so intense, but I had my husband beside me to help me through them. We had the radio playing as I knew we wouldn’t be hearing our baby cry when they were born, and I didn’t want them born into silence. I asked George to call our other midwife in when I could feel myself transition into the pushing stage of labour. She came in and we waited. She held one of my hands and my husband the other as I delivered our beautiful baby girl, Ivy. She looked so perfect. Due to her being 21 weeks, she was born alive, and we had around half an hour before her heart stopped beating.  

Our very close family came to see her and hold her. We were able to stay the night with her and have her in the cuddle cot next to us. I sang to her, and we read her a story. It was the most surreal feeling because of the oxytocin and feeling proud that I had delivered a beautiful baby girl. But soul destroying because we couldn’t take her home. 

The next evening, we left the hospital without our baby. Walking back to our car with our memory box, while alongside us walked a mum and dad with their newborn baby. It was cold, dark and sad.  

We had a post-mortem done on Ivy as we felt we owed it to her to find out what happened. We had a private NHS funeral with our closest family. It was such a beautiful service. We were joined by more close family and friends afterwards at our local pub. Their support throughout everything has been incredible. At the pub, our little girl Florence and two nieces, Olive and Sylvie, let off a balloon to our girl in the stars. A moment we will remember forever.  

We talk about Ivy all the time, and our little girl is so proud to be a big sister. We will never forget Ivy. We chose a lifetime of pain and heartache so that she would never have to suffer.