Julz Scott

Mum to Melody, born too soon. Blogger at Melody and Me and premature birth group support leader. This is Julz.

This is Julz’s Story

'It’s important to say your baby’s name, we always talk about her.'

When I was pregnant with Melody I contracted HELLP syndrome, a severe form of pre-eclampsia.

She was born at 26.6 weeks by caesarean section and we’d been told she would be on a ventilator for at least 10 days, that she would have to fight, and she really did.

Less than 24 hours later she was off the ventilator, by 48 hours she was only on oxygen. She spent five weeks in special care where brain scans were fine, there was no sign of cerebral palsy and her heart murmur had cleared itself.

We finally had a date to bring her home and then, suddenly, were told she wouldn’t survive. She contracted sepsis and just couldn’t come back from it.

It was so shocking, I was devastated, really angry, to have survived all the odds, to have got as far as she did, and she still didn’t get to come home.

It was completely numbing, like it was happening to someone else.

In the baby unit I was forever clock-watching to express milk, all of a sudden I didn’t need to do that, but I continually watched the time. It was a couple of weeks before it hit me she’d gone.

There were so many questions, still are. We decided against a postmortem and we sometimes regret it but we just wanted her to be left alone.

It’s not talked about enough, having a baby who lived, then died. There needs to be much more support available.

We definitely wish we’d known more about the resources available for premature babies, you can get coffins, cold cots and clothes, speciality florists cater for them. There’s nothing wrong with not wanting a funeral, but it’s good to know that there are options out there for you.

We found lots of brick walls when it came to support, some charities didn’t want to know because they dealt with stillbirth and babies up to five days old, Melody was ‘too old’ for them to help, others couldn’t help because she was ‘too young’.

There definitely needs to be better bereavement leave for baby loss parents.

Don’t rush back to work after a loss, I’ve spoken to parents who went back too soon and regretted it.

Work was a trigger for me and I couldn’t go back because it reminded me of her. I know some parents have baby showers with colleagues then have to go back. I also think working with the public must be tough, if you work with the public it’s not just your colleagues you face, you might have to explain your loss 30 times a day and that’s not fair.

'Don’t rush back, take your time, you’re grieving your baby.'

I needed to get my thoughts out about our loss and I found I wrote about my grief better than I could have spoken about it.

Initially, it was a release, not necessarily for people to read, but then people started to say it had helped them.

Sharing definitely helps. Everyone grieves differently, we didn’t sit on the sofa crying but we were still grieving. Writing enabled us to get that awareness out there, to let people know that it was okay to mention her name, if we did burst into tears it’s because we were glad our baby had been thought about.

People have crossed the street to avoid me or said, ‘I can’t talk to you about it, it’s so sad’. I understand that it’s hard to know what to say to someone going through loss but say something. And don’t just concentrate on mum, dads need support too.

I have heard loss can put a strain on relationships but, thankfully, we’ve always been really close and we were on the same page. That really is the most important thing, to talk and to listen to each other while you’re grieving.

If you can talk, get support, if you can’t talk to friends and family seek help online.

There are a lot of places to get support, Tommy’s being one of them, I was a big user of the online parenting community.

It was mostly very helpful, but there were a few people who would kind of invalidate our loss because we had photos, we got to spend time with Melody and because we have other children, and that was hurtful.

I’d try not to let it upset me, try to understand that they were angry and sad about what happened to them and maybe lashing out because they are struggling. Mostly they’re angry at the world because their baby died.

You have to take one day at a time, don’t compare yourself to someone further down the line, grief is individual to you. It’s your experience. Nobody should judge you.

We talked about having another child while Melody was alive and I fell pregnant again not long after she died. It was scary.

We had an amazing consultant, but spent a lot of time fighting with other professionals. I had scans every fortnight, then every week, to check for pre-eclampsia and the sonographers would question why we were having a scan every single time.

It makes you feel really small when healthcare professionals question you like that, we just needed extra reassurance that, this time, we’d be bringing our baby home.

Sometimes it feels like she doesn’t matter. People talk about stillbirth and miscarriage being taboo, but neonatal loss is never mentioned.

That’s a big trigger for me, it’s devastating to feel your baby didn’t matter. She lived, we lost her, and from the moment she died I’ve just felt this battle to keep her memory alive, to talk, to raise awareness of her, of HEELP syndrome and of premature babies.

We’ve done a couple of charity events in Melody’s memory. We’ll never go to her school plays, sports days, these functions are a way of doing something for her.
I started Melody’s Voices with a local midwife, we were shortlisted for a blogger award but I wanted to offer more.

Two years ago, I set up a face-to-face support group. We meet at a local café, drink coffee, eat cake, talk and just be somewhere where we can speak openly, without judgement, with people who really understand.

I called our group Little Daffodils because they were Melody’s flower, there was a heat wave that March that she was with us and they were everywhere. Daffodils are bright and pretty, they don’t live very long but, while they are here, they make a huge impact, just like Melody.