Emily’s story
My name is Emily I am 31 years old, I was 30 when I was pregnant and gave birth to my baby boy Joel. I have 3 children with my Fiancé James – Zach aged 6, Louis aged 4 and Mason aged 2. All 3 boys were conceived within 3 months and I had healthy pregnancies with no concerns or issues. I am a healthy weight and a very well person with no health concerns.
We were excited to start trying for baby number 4 to complete our family. We were lucky enough to conceive on the second month of trying. I had been taking folic acid for the month before and through to 12 weeks. Admittedly this was missed from time to time but I took it before I was pregnant which is more than I did when I was pregnant with my 2nd and 3rd babies.
We went to our 12 week scan and there were no concerns everything looked lovely and Joel’s due date was confirmed as Monday 17th May 2021. We then told the boys they were going to have a brother or sister and they were all so excited.
My pregnancy was good and at 16 weeks I heard his heartbeat. Oddly it did take a very long time to find which made me really panic, but we found it and heard his heart beating happily so we weren’t concerned.
Our 20 week scan was originally booked for 21st December but then rescheduled for 29th December. Looking back this was a god send as I got to enjoy Christmas with the boys blissfully unaware that anything was wrong.
At our scan the sonographer was very quiet and didn’t say much to us until she confirmed our baby had an open Spina bifida. Another lady was brought into the room to confirm the diagnosis. We didn’t get chance to really see our baby but as she was scanning his lower back we could clearly see he was a little boy. We were absolutely shell shocked and I was terrified.
We were taken to a family room to meet the specialist midwife. We were then talked through getting an appointment in the next couple of days for a scan with fetal medicine in Bristol. From the moment we were shown Joel’s Spina bifida we knew it was bad but tried to remain positive until we knew for sure.
Thankfully we didn’t have long to wait and our scan was booked for 31st December, just 2 days later. Whilst waiting for the appointment in Bristol I spent the whole time researching obsessively everything I could about open Spina bifida, what it was, how it happens, what it effects and potential outcomes etc.
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 as 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, Bristol. Sitting in the waiting room with lots of happy couples having their scans and coming out with scan pictures was extremely difficult. The scan was wonderful though, we had such a long time looking and seeing Joel, it was so clear but sadly the prognosis was not good.
We were informed that sadly Joel had a large sac on the outside of his spine, which covered 5 segments of his spine (L5 to S3) measuring 23x20x11mm and 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.
We were explained he would need an operation in his first days of life to close his back, an operation to repair his ankle joints and a VP shunt to drain excess fluid on his brain. The pressure on his brain could also cause learning difficulties and effect his personality.
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 at Great Ormond Street Hospital which would require relocating to London from the procedure before 26 weeks until Joel had been born and had initial treatment, which with our 3 boys this would have been near impossible to manage.
Sitting in the waiting room with lots of happy couples having their scans and coming out with scan pictures was extremely difficult.
Finally, we were given the option to terminate the pregnancy.
It was clear the route the consultant felt was best for Joel but 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 3 children as Joel would be very poorly and born needing a lot of care throughout his entire life.
Sadly, we knew that the right decision for us and the best decision for Joel 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.
I honestly thought I would fight for my baby and I have always said that nothing would stop me having my baby but seeing it in black and white changed this. Understanding just how badly Joel’s quality of life would have be impacted and also how this would impact Zach, Louis and Masons lives, there really wasn’t another choice in my mind.
We were booked in for a termination in 2 parts. On Saturday 2nd January we went in and I took the pill to terminate the pregnancy and then I was admitted on Monday 4th January to be induced to give birth to Joel.
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. I was still feeling him though so I wasn’t sure if it had worked. In the space of a couple of days I had gone from not wanting to feel Joel before our scan in Bristol to again absolutely treasuring and holding onto every single movement and spending so much time holding and talking to my bump.
On Monday, I had my first tablets inserted behind cervix at 10.15am and again at 2.15pm. The start was slow but from 5pm it started becoming intense and the normal very painful contractions with labour. It was the most surreal experience; your body just wants to give birth which feels normal after giving birth to 3 babies. I had to keep reminding myself that Joel wasn’t staying and that I had to say goodbye.
I found the labour really tough. I’ve given birth to my three boys naturally in a birthing pool where I feel comfortable. This was out of my comfort zone; being induced to forcibly get Joel out and not in water, my natural pain relief. I was also very adamant I didn’t want pain relief except gas and air. I was so worried if I had anything stronger that I would forget something, I didn’t want it to be a blur 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 1 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 very clearly evident 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 from the Remember My Baby charity and took some photos of Joel meeting his brothers, Grandma and Nana. These photos are heartbreakingly beautiful but I’m so glad I have them. On a daily basis I go through them 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.
After Joel’s birth was tough. I’d given birth so I was tired, sore, bleeding heavily and I had no umph after losing a litre of blood. My stomach ached and felt hollow, completely empty. Then in the next days your body continues as if you’ve had a baby and I had to endure my milk coming in and leaking away with no baby to feed. Breastfeeding is my most favourite thing about having a baby and the joy I get from feeding made this particularly hard.
The two days that I was in the hospital we received wonderful care and support in the safe bubble they had created for us. Looking back, I actually wasn’t that emotional as Joel was with always me.
James and I just knew when the time was right to leave Joel, his body was deteriorating and we wanted to remember him before his body changed too much. 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.
It was extremely hard having 3 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 4 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. It was 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, whose six, also got so upset and couldn’t stop crying at the end of the service. I wanted to take his sadness away from him instantly, but I couldn’t do anything but cuddle and talk to him. Thankfully children are resilient and bounce back quickly as all of our boys have.
We all certainly 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 him. He was so strong holding on to meet Mummy and Daddy, which always makes me think, would he have been a miracle child and been ok? But we worked off the facts and 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 but it seems to be my way of coping/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. We have already had signs that Joel is with us and will very much always be part of our family and our life.
I want people to know firstly that it happens, it just happens… We became the 0.06% chance of having a child with open Spina bifida, 6 babies out of 10,000 births each year in the UK. We don’t have any of the risk factors and it was just bad luck.
Secondly, just because you chose to end the pregnancy doesn’t make it any easier or painless. I honestly felt I had no choice in the decision and it was the only option we had based on his diagnosis. 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.