Beautiful flower

Emma and her husband made the impossible decision to terminate a much wanted pregnancy after learning their baby had severe Spina Bifida. This is Emma’s story.

Supporter story by Emma.

In December 2017 my husband and I made the choice to have a termination for medical reasons after finding out our baby had severe Spina Bifida at the 20-week scan.

Our baby was very much wanted, we have a gorgeous daughter and always knew we wanted more children. I had started taking Folic acid in preparation and after 3 months we started trying to conceive, we was lucky enough to conceive straight away.

Before the 20-week scan it had never crossed my mind that there could be something wrong. All our screenings and scans before had been fine. We were excited to see our baby and find out the gender, blind to the facts of what the scan is really for. Having our baby diagnosed with Spina Bifida was not what we was expecting. It was a day that changed our lives forever.

After the medical evidence, information and advice from health professionals we made the decision to terminate. It was far from easy, a decision full of pain and so many tears.

I rang the consultant a few days after the scan to let him know our decision and later on that day I went to hospital to start the process. Everyone from the receptionist to nurses made sure I was well looked after, I sat in a side room where I was given a box of tissues and a cup of tea and spoke to a specialist midwife who went through all the information I needed to know about the termination and after care. The consultant then came to start the first part of the process. I was sent home and booked in 48 hours later to be induced.

The wait was heartbreaking, I couldn’t stop crying and couldn’t sleep.

48 hours later on a Saturday morning at 8:00am we made our way to the hospital, we was given a room on the labour ward but it was away from the main unit. My husband was allowed to stay with me until I was discharged. The room had a double bed, tv, tea making facilities and a private bathroom. It looked like a hotel room.

Our midwife that day was lovely. First she sat and spoke to us about our wishes, if we would like to see and hold our baby, if we would like our baby to be kept with us in a special crib, on the ward or taken to to the mortuary, if we would like photos of our baby and a memory box which could be kept at the hospital until we felt ready to take them home. Every choice we made was flexible, if we changed our minds at any point it was no problem.

I was sick with nerves, trying to block it all out. I didn’t want to think about what was going to happen next. I had never been in labour before as our first child was delivered by C section. When we was ready I was induced and once I started getting contractions we was moved to a room on the main Labour unit as I needed stronger pain relief but the room was still away from the rest so we didn’t have to hear or see other women in labour and babies crying.

My midwife did not leave my side unless I had asked. She made sure my husband and I had everything we needed and did everything she could to make a bad situation seem that little bit better. She brought over some packets of knitted baby clothes that had been specially made, they were beautiful, we got to choose what we wanted our baby to wear. I had crocheted a hat and brought a comforter and blanket in to be kept with our baby. As things progressed and I was soon to deliver we was asked again if we wanted to see or hold our baby when delivered, at the time we were both unsure. Part of us didn’t want to accept what was happening.

6 hours after being induced I delivered a baby girl. Straight away I knew I wanted to hold her. She was so small and precious like a beautiful flower. I loved her so much and didn’t want to let her go. I have never felt such love and pain at the same time. She looked so peaceful.

When we was ready my midwife took her and dressed her, she cared for her just like any other baby. She was then put in a tiny Moses basket. We choose to keep her on the ward until we were discharged so we could see her anytime we wanted.

We was taken back to our original room and left to take in everything that had just happened,  someone was always there if we needed them. We was discharged the following day.

The hardest part for me was leaving the hospital and coming home without our baby.

The following day I had a check up from the community midwife, she just hugged me and cried with me. In the following weeks the NHS arranged a funeral which we personalised and attended the following month. Attending our child’s funeral was something we never could of imagined. We did have the option not to attend but that wasn’t a option for us, it was a time to show just how much we love her and how much she means to us. 

The support continued, there was always someone we could contact and there always will be. 

I joined a forum on ARC which was recommended on a leaflet we was given, they are a charity who help parents and others through antenatal screening and its consequences. I had no idea how many women and families go through this. I don’t know how I would of coped without ARC, being able to talk to other women who had been in our situation helped tremendously.

It was a very dark time that we could see no end too, everything we thought we knew had changed. Our whole family grieved for a much loved daughter, granddaughter, sister and niece. It was extremely difficult but time does heal to some extent.

I still cry for the daughter we had to let go and not a day goes by where I don’t think or speak about her. The heartache of losing our daughter will never be far but we have learnt to live with it. It’s the love we have for her that shines through now.

For women and families considering or going through a termination for medical reasons, This was our situation. Every diagnoses is different, from the moment you receive bad news, the decisions you make and choices along the way is all very personal to you. Every one grieves differently and there is no right or wrong. There is so much support out there and you are not alone.

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