Nothing can prepare you for hearing those words 'incompatible with life'

Our first round of IVF

Jax was born in 2016 - but not without struggles, mind. I ended up having to have emergency abdominal surgery at 10 weeks pregnant due to a complication associated with IVF called ovarian hyperstimulation syndrome. I was in hospital for almost 3 months throughout the pregnancy. The entire pregnancy was full of anxiety and complications, as well as Jax spending some time in the NICU after birth. We are truly lucky that we got to bring our son home.

A doctor at St Thomas’ Hospital pointed us in the direction of Tommy’s for support, for which I’ll be eternally grateful. We always knew we’d like to try for a sibling for Jax, but it took me 2 years (and almost 1.5 years of therapy) to feel strong enough to attempt IVF again.

A sibling for Jax

After our second IVF cycle in 2018 we found out were pregnant. We simply couldn’t believe our luck. The anxiety started pretty quickly as my consultant initially thought we were dealing with an ectopic pregnancy, as they couldn’t find anything in my womb. But after 4 consecutive days of nerve-wracking scans, they finally found what they were looking for and told me the words you long to hear - ‘you are indeed pregnant’.

The weeks went by and all was looking great. We started to allow ourselves to get excited. We even picked out names! I had a pretty sizeable bump from quite early on and Jax loved talking to it, saying things like ‘I’ll let you play with my building blocks with me’ and ‘I wonder if you’ll like ice cream like me?’. It was amazing watching my son begin to become a big brother.

Devastating news

That happiness sadly wasn’t to last, though. On 26 October 2018 we had to say goodbye to our second son, Jesse, in the most harrowing way. Jesse had always been very active on scans, waving and kicking away at us.

I was being quite closely monitored because of my previous pregnancy but won’t ever forget ‘that’ scan, when they found what they initially told me was a pouch of fluid on the baby’s abdomen which indicated his stomach hadn’t closed. We were told it was one of 3 things. The first 2, treatable, the third one meant the baby was ‘incompatible with life’.

A mother's instinct

We were told to wait another 2 weeks and return for a scan so we could see if there had been any progress. Call it mothers’ instinct, but I just knew in that moment, that we wouldn’t ever be bringing our baby boy home with us.

We took ourselves off for a private scan the next day. There was no way I could wait 2 weeks after what we’d been told.

The sonographer sadly confirmed our worst fears. My husband and I  sobbed. I was so angry. Why our baby boy? Why, after everything we’d done to even get to that point? Just why? Our baby would never survive.

The following day, we went back to the hospital so my consultant could scan me again and we could make our decision. I simply could not prolong the inevitable any longer. My mental health was already starting to suffer.

Terminating our much wanted pregnancy

We saw at the final scan, in 3D detail, just how unwell our little Jesse was. As well as his beautiful tiny face and button nose, we saw the extent of his issues. One leg was bent up behind his back, the other foot was poking through the sac. He had a tumour at the base of his spine, his liver, kidneys and bowel were all outside of his body, because of this his heart had dropped down to where his stomach should have been. They couldn’t even find his bladder.

Despite all this, his heart was beating away perfectly.

Nothing can prepare you for hearing those words ‘incompatible with life’, or then having to begin the logistics of having to terminate your much-wanted pregnancy.

It was truly, truly heart-breaking. I had to carry Jesse, whilst knowing what was coming, for almost another 2 weeks.

Looking back

I’m not sure how I got through those days. I’m pretty sure if I hadn’t have had Jax to look after, and access to counselling and Tommy’s, I’d have stayed in bed for months on end, just to avoid the outside world.

I’ve had 2 miscarriages since we lost Jesse but it is the termination which hangs heaviest on my heart. We must start to include termination for medical reasons within all chat baby loss. The taboo must be lifted, and we all need to feel that we can speak openly about it. We lost our babies too.