It can be so hard when you are suddenly in a situation that you have never experienced before and you aren’t sure where to start looking for help. I wasn’t sure where to turn to find helpful resources when I went through the most difficult few months of my life.

A routine scan highlighted that my baby’s heart rate was too high and he had a fluid all over his body that should not have been there. He needed to be delivered immediately so I was rushed into theatre. My son was born at 30 weeks with Hydrops fetalis and Supraventricular Tachycardia (SVT). 

My son’s heart rate was the highest the staff had seen at the hospital and they thought he was likely to go into heart failure. The doctors and nurses really struggled getting his conditions under control. To start with each time he went into SVT the alarm was triggered. I was sent out of the room while they worked on getting his heart rate back down into the realms of normal. ​​

A premature baby in his incubator
My little boy in his incubator

After a few weeks they changed tactics.

Nothing that had initially worked to lower his heart rate was working now. They decided to let the episodes happen and record how long they were happening for. I sat there staring at my baby feeling useless.

The doctors and nurses had encouraged us not to look up his conditions so we initially we relied solely on them to tell us what was happening and what the plan of action was. A few weeks later I did Google both conditions and I was so glad I had followed the doctor’s advice. It was really scary reading about Hydrops, SVT had more positive outcomes but we were told due to the amount of time our son was in SVT his heart may not be able to take it.

So what did I have to turn to, to help me?

The team of doctors and nurses looking after my little boy were my primary source of information and they were amazing. No question was too much to answer and if I didn’t understand they would find other ways to describe things, nothing was too much trouble.​​

Doctor caring for patient. Photography credit: Arvin Chingcuangco
Doctor caring for patient. Photography credit: Arvin Chingcuangco

 There were also support workers who could help with practicalities as to what facilities there are on the unit, how to get parking passes and where to get food and drink. There was someone you could ask all breastfeeding questions to and get support on anything from how the pumps work, to where you could go to express, to how to increase you milk supply. I realise not all units have this kind of support so the nurses do their best to fill this gap.

My parents were great at researching things for us. They researched where we could get clothes suitable for a premature baby, medication my son was on, who his new doctors were going to be etc. Like a lot parents we also turned to the trusty search engine of Google and we looked at the NHS website too.

I felt lonely

None of the other premature babies on the neonatal unit had the conditions that my baby had though and that made it feel lonely. One of the mum’s told me about a couple of Facebook groups such as Parents of Preemies Support UK and Premature Babies and NICU. If you research health conditions you are more than likely to find a group or a page on there to that will offer the support from others going through similar.

Use all sorts of variations of premature baby in your search, for example: preemie, premmie, prem. Lots of different pages will be presented to you on either Facebook or Instagram which will help you connect with other parents who are either going through or have gone through the neonatal journey.

Someone on their phone. Photography credit: Priscilla Du Preez
Someone on their phone. Photography credit: Priscilla Du Preez

Some helpful resources on Facebook and Instagram

Other pages and groups on Facebook I have found helpful or sometimes amusing are (and they are all set up by mum’s who have had premature babies):

Over on Instagram good pages to follow are:

There are also many amazing charities that can help. Bliss and Tommy’s charity are probably the biggest in the UK for support with premature babies but with a little bit of research or by asking the NICU staff you will probably find a few local ones too. They will all really vary with the types of help and support they can provide you with.

I hope this is useful and gives any families with a premature baby a good place to start.