On the surface I've snapped back - inside I still feel numb

I had no issues in my first pregnancy. He was 2 weeks overdue, we ended up having an emergency c-section, but we were both fine. When he was 13 months old, I had our daughter, this time by vaginal birth (VBAC) and, again, no  had issues at all.

I had additional scans with our third towards the end of the pregnancy because he was measuring small, and a c-section. He’s still on the smaller side now but is fine, a very happy little boy.

I fell pregnant with Dylan last year but something put me off going to the doctor, so it was the end of August before I saw a midwife.

Devastating news

At our first scan at Birmingham Women’s in early September they said I was around 13 weeks and everything looked great other than me having a slightly low-lying placenta, but they said it was nothing to worry about.

We were then placed under the care of Warwick because Birmingham didn’t have capacity, and went there at around 16 weeks for another scan. 

My husband had our youngest with him so was waiting outside, which meant I was alone when they told me our baby had excess fluid on his brain and they’d need to refer us to Coventry for a more in-depth scan. There wasn’t really any reassurance.

We were shocked and confused. At home I googled ventriculomegaly but it didn’t really give us any more answers so I was terrified going to Coventry for the scan. After, they said it wasn’t good news, our son had spina bifida and there were 2 options, terminate the pregnancy or see if we were eligible for foetal surgery.

It was a silent journey home. Then I went on social media, desperately searching for parents who had been through the same thing. 

I contacted one mum on Instagram for some insight into what we were facing and she said her son was 4, walking, talking and happy.

We had been told our son would need a wheelchair, would have bowel problems but for me that wasn’t an issue, he was our son and we loved him.

Our amniocentesis results came back fine then we went to UCLH on October 21st for a foetal brain and spine MRI, it was such a long and stressful day.

After a lengthy scan and an internal, the sonographer confirmed the diagnosis, very severe spina bifida. He also said my low-lying placenta could mean we got to the point where the situation became life-threatening for me. A consultant came and explained that not even a wheelchair would help our son, he would never be able to sit up.

Again, we left another appointment feeling so negative and not really knowing what to do. For me, it felt like they saw no other choice but termination. Again, I just cried and cried, unable to take it all in.

When the MRI scan results came back it really hit me, the word ‘severe’ in almost every sentence. We also discovered he’d only developed 1 kidney. Continuing the pregnancy felt so unfair on him.

Then, my sister booked me a 4D scan because I wanted to have Dylan’s heartbeat recorded and the sonographer said his heartbeat didn’t sound normal, nobody else had told us that.

Saying goodbye

On 13 November we had one final scan before the appointment to put him to sleep and it was the first time he was really wriggling around, it almost felt like he was telling me not to let them do it.

They flipped the monitor away before they inserted the needle. I had gas and air but when my eyes closed, I felt like I couldn’t open them again.

I managed to open my eyes, just as they injected the last of the medication and I saw his little hand drop, it was like he was waving goodbye.

I went back on the Friday for medication to start labour, then again Saturday night to wait. It wasn’t until Sunday around 4pm they took me to the bereavement suite, I remember a trolley outside with a little white box on and I knew that’s all I would be taking home.

They explained they’d insert tablets into my cervix then it would be oral medication every 6 hours to start labour. At that point we were put in a horrible room with unplugged computers everywhere and left to it.

I’d had a little bit of blood but when I went to the toilet I felt a gush. My mum called for help, doctors came and said I needed to be rushed to theatre. My husband was on his way but not there yet.

I remember the light wouldn’t work so the nurses had to use their phone torches to examine me, I remember being terrified, asking if I was going to die. They did bring a consent form and made me aware that they may need to remove my womb and uterus, I just signed it. I didn’t want to be put to sleep, too scared I’d never wake up, but they said it was needed. I’d lost a litre of blood before we even got to theatre.

I didn’t wake up until 10am. Dylan was born sleeping at 10.05pm the night before but they couldn’t stop me bleeding so I was in theatre until 2am. I lost 5 litres of blood, needed a transfusion and my bladder was damaged so I needed a catheter for 4 weeks. I didn’t lose my uterus and womb.

We spent 4 nights with Dylan, I could see he was deteriorating but couldn’t face leaving him. My husband brought our oldest son when it was time to say goodbye, then our lovely bereavement midwife Amanda brought a pushchair so we could take him to the mortuary ourselves. After, we had to arrange a funeral, we still need to find somewhere to scatter his ashes.

Processing my loss

My scar was infected 4 times which meant lots of antibiotics but I’m getting there physically - mentally and emotionally I am drained. 

I’ve not begun to process what happened, a life-threatening operation and knowing that I’ll never see our son again. I met a woman with a similar story through Instagram, she made me aware of Tommy’s and their stories have helped. 

I’ve also had some counselling which helps because it’s the only place I can really talk. Nobody talks about Dylan, I don’t know if it’s because they are scared to, but it leaves me feeling very lonely and like he’s been forgotten.

It’s also difficult for my husband and I to find the space to talk about it with 3 young children.

There’s so much pain, and guilt. I have days where I really don’t know if I made the right decision. On the surface I’ve snapped back into mummy mode for the kids, but inside I feel numb.

I want others to know that if you are told you are at risk of bleeding, don’t ignore it because we were completely unprepared and it was terrifying.

I also want to tell other mums, and maybe remind myself, that we must be kind to ourselves and allow ourselves to heal after trauma and loss. I’m not there yet but, I believe, we women are stronger than we know.