“We talk about Joel always” – Emily’s story

Content warning: please note that this story mentions termination for medical reasons. Please take care while reading.

My Fiancé, James, and I were excited for baby number four to complete our family. Everything looked lovely and the due date was confirmed as Monday 17 May 2021. We told our boys and they were all so excited.

When we learnt our baby was a boy we named him Joel. I got to enjoy Christmas with the boys blissfully unaware that anything was wrong.

When we went to our next scan, I’d had a bad feeling. I kept saying to myself, “You can’t have four healthy babies with no problems or miscarriages”.

At our scan the sonographer was very quiet. Then the moment came, she confirmed our baby had an open spina bifida. We didn’t really get a chance to see our baby on the screen. We were absolutely shell shocked and I was terrified.

From the moment we were shown Joel’s spina bifida, we knew it was bad, but we tried to remain positive until we knew for sure.

I started researching obsessively everything I could about open spina bifida, what it was, how it happens, the effects and potential outcomes. Those two days were so hard - waiting to know the full diagnosis of the severity of Joel’s condition. Every time I felt Joel move it was bittersweet. I almost didn’t want to feel him if I knew I was going to lose him. I broke down when the boys spoke to their brother and still wanted to touch my belly.

After the longest two days of my life, we drove to St Michaels Hospital in Bristol. Sitting in the waiting room with happy couples coming out with scanned pictures was extremely difficult. The scan was wonderful though, we had such a long time looking and seeing Joel, it was so clear. Sadly, the prognosis was not good.

We were informed that sadly Joel had a large sac on the outside of his spine, which covered five segments of his spine. His spinal cord was visible within it. This is known as myelomeningocele spina bifida and is the most severe form.

Joel was also showing signs of Arnold Chiari II malformation; a lemon shaped head and a banana shaped cerebellum where pressure from the hole in his spine was pulling his brain down his neck. It was also clear that the amniotic fluid in the sac had been in contact with the nerves in Joel’s spine as he had severe bilateral tailpipes on both feet (also known as club feet).

The sac was considered large on a tiny baby and we then discussed the risks in detail for Joel including; motor, sensory and orthopaedic problems such as difficulty walking, curvature of the spine, bladder, bowel and sexual dysfunction to name a few.

The consultant talked us through our options; go ahead with pregnancy and wait and see, although as Joel’s spina bifida was so severe they didn’t know how well this would go.

We would qualify for in-the-womb foetal surgery, but this could only have been carried out 26 weeks before Joel’s birth and was unlikely to result in a substantial improvement in his quality of life.

Finally, we were given the option to terminate the pregnancy.

It was clear that this was the route the consultant felt was best for Joel, but she explained all our options fairly, allowing the decision to be ours alone. She urged us to consider the impact on our current lives and our three children, as Joel would be very poorly and born needing care throughout his entire life.

Sadly, we knew that the right decision for us was going to be to terminate the pregnancy. This is a decision we still stand by despite being the hardest and most heart-breaking decision we’ve ever had to make.

The weekend of taking the pill was awful as I was worried Joel would suddenly stop moving and I’d know. But I felt him move as normal all weekend, and only slowed down on Monday morning. In the space of a couple of days I had gone from not wanting to feel Joel before our scan to treasuring every single movement. I spent so much time holding and talking to my bump.

I had to keep reminding myself that Joel wasn’t staying and that I had to say goodbye.

For the labour, I was adamant I didn’t want pain relief; I wanted to remember every single moment of Joel’s time in the world.

Joel was born at 6.26pm at 21 weeks weighing 11oz. The moment he came out he let out a cry, the sound that I replay in my head over and over... my perfect little boy. He was alive and breathing on me for an hour and 44 minutes, before taking his last breath on Daddy at 8:10pm. He was a miniature perfect little boy, his spina bifida was clear but he was beyond beautiful like his brothers.

We had the whole evening and next day with Joel, where he was with us always. We spent that time cuddling and kissing and making memories of him. A photographer came and took photos of Joel meeting his brothers, Grandma and Nana. These photos are heartbreakingly beautiful but I’m so glad I have them.

We took so many photos of Joel and they honestly keep me going. On a daily basis I go through my pictures and my only video of Joel alive and moving. Every time I relive holding my little boy breathing on me, skin to skin on my chest.

The two days that I was in the hospital we received wonderful care and support in the safe bubble they had created for us.

When the time came to leave Joel in the hospital it was horrific. We gave him one last kiss and walked out leaving him in his cold cot. My heart hurt so much like I didn’t know possible and has felt like that ever since. I could hardly breathe, and just wanted to scream as loud as I could but we got in the car and drove to collect the boys.

It was extremely hard having three young children at home to care for, particularly that first evening at home as we were both numb and felt lifeless. We got through it and having the boys to love us was so helpful in giving us strength.

We had Joel’s funeral service four weeks after his birth and he was cremated the same day. It was a beautiful service which I tried so hard to make perfect for our little boy. The day was impossibly hard and heart-breaking watching James carry the coffin of his little boy into the room. To see my rock and love of my life in bits holding back tears is an image I won’t ever forget.

My eldest son, Zach, couldn’t stop crying at the end of the service. I wanted to take his sadness away from him instantly, but all I could do was cuddle and talk to him. Thankfully, children are resilient and bounce back quickly as all of our boys have.

We had some comfort from Joel’s ashes coming home. The boys would ask to have Joel down to talk to or to hold the box with them. On the first night Joel was taken upstairs for the bedtime story.

I will forever question how Joel would have been if we continued with the pregnancy despite being confident we made the best choice for Joel. We made the hardest decision of our life.

I’m still so sad and emotional about losing Joel. I have good days and bad days, I’m currently always on a mission to do something and keep my brain occupied. It seems to be my way of coping and grieving. I try to get on with life and be my happy self for my boys. We talk about Joel always and involve him in everyday life. Joel will very much always be part of our family and our life.

I want people going through a similar experience to know that it is not anything you’ve done and it is no one’s fault.

Secondly, just because you chose to end the pregnancy that doesn’t make it any easier. Before I gave birth to Joel I remember saying, “I wish at the scan his heart wasn’t beating and I didn’t have to choose,” but I don’t believe that anymore as to have Joel alive and with us was a magical experience which I feel blessed we were lucky enough to have.

Thirdly, losing a child is tough beyond words but there is so much love and support out there to pull you through the dark days. It really made me appreciate people and how kind and generous other human beings can be.

I know I will always have that pain of losing Joel and life is just different now, but I have the most amazing, supportive, loving partner and am forever grateful of my boys and my beautiful angel baby Joel. He will always be with me in my heart wherever I go and whatever I do.

Baby Loss Awareness Week between 9 and 15 October is an opportunity to help break the silence around pregnancy and baby loss. Bliss is one of over 60 charities from across the UK who collaborate during the week.

Please visit the Baby Loss Awareness Week website to find out more.

If you are going through a similar experience, the charity Antenatal Results and Choices offers information and specialised support for people who have received a diagnosis after antenatal testing. Get in touch on 0207 713 7486 or email at info@arc-uk.org