Freya's story - Child Growth Foundation

By Freya’s mum Krista, November 2022

Recently my husband and I had the opportunity to attend the Child Growth Foundation Convention with our 17 month old daughter Freya.

We were taking her to meet her UK family after being cooped up in Australia during our Covid lockdown.

It was absolutely amazing to meet families who have shared similar experiences to ours, and we made a bunch of new friends. My husband did find it quite confronting though, when he realised just what Freya’s future might look like; he hadn’t done as much research on RSS as I had, and hadn’t realised quite how life-changing a diagnosis it can be.

My pregnancy was going well until week 28. During a routine growth scan the doctor became very alarmed when Freya suddenly dropped from the 10th percentile to the 3rd! We had a lots of scans in the hospital that day and shared a look of horror when the consultant “reassured us” that we wouldn’t need to have the baby taken out that day…

We made it to 37 weeks before Freya was born via caesarean section at 2.2kg (4.8 lbs). Right from the start she had problems feeding, she had EBM with top up formula and was just not gaining weight.

However, after a week all alone in hospital with her during Perth’s only Covid lockdown I’d had enough and begged to be allowed home. She gained 30 grams the first day out, probably just being away from the stress ????

She continued to have very slow growth and was extremely unsettled – after 4 months she was switched to different formula as she was CMPI. Then she started actually sleeping a bit. Hallelujah!

We visited the Child Health Nurse and Emergency room so many times when she stopped feeding and got sick, and spent a fortune on hospital parking during her inpatient stays… it was a very stressful first year!

Eventually we were seen by a lovely paediatrician at Perth Children’s Hospital, who asked if anyone had mentioned Russell Silver Syndrome to us.

When I Googled the list of symptoms we actually shed tears in the hotel cafeteria as we realised Freya had almost every single symptom!

Discovering that there was a reason she was failing to thrive, why she looked so different to other babies and why she was so late to crawl and walk was such a relief.

Although it was tinged with fears for her future, which is why it was so important to meet other RSS families at the Foundation.

Now Freya is 19 months and finally has her first few teeth. She’s almost running on her tiny feet! She is wearing age 9 months clothing and constantly surprising people with her cheeky attitude. We are still waiting to see if we get genetic confirmation of RSS and another condition called ectodermal dysplasia, but we know that while she may be small she is certainly a huge character who is going to leave her own mark on the world, no matter her size and appearance.

Our visit to the CGF Conference really opened our eyes to the world of kids living with these growth conditions. We came armed with a huge list of questions, and got answers to everything. Growth hormones, genetic test, feeding, injections – there was someone there to talk to about every aspect of Freya’s situation! We came away much better informed… and with yet another list of questions, this time for our doctors in Perth!

Thanks to the Conference we learned about a whole range of possibilities for Freya. Whilst her development may be slow and slight, her future will full of love and support – and the best options our health service can provide.