Freya’s story

Freya’s story

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…

Newborn SGA
SGA - Small Gestational Age
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.

Small Gestational Age
SGA - Small Gestational Age
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.

An IUGR Story

An IUGR Story

An IUGR Story

A Mum’s Story About IUGR

For a recent IUGR Awareness Day (Intrauterine Growth Restriction) we are fortunate to have a guest post from Susanne Remic, GhostWriterMummy. For anyone who has read her blog, you will know that by talking about her pregnancy experiences and campaigning for better support, she helps countless others going through similar experiences. In recognition of this, she was a finalist at this year’s Tommy’s Awards for Mum’s Voice Award. This is her IUGR experience.

At 29 weeks gestation, we were told that our 4th baby wasn’t growing as well as had hoped. We’d had a growth scan due to previously having had two SGA babies, and the hospital had wanted to keep an eye on us as a result. We honestly thought that this growth scan would show a happy, healthy baby too, just like the others.

I remember that the air inside the doctors office felt so still as we waited for her to come through following the scan. I was perched on the end of a bed, feet dangling over the side. My husband was standing awkwardly, commenting on the lack of seats for dads. A normal day. Feeling normal. Smiling. And when the doctor swept into the room, we had no idea what was to come. There was no way we could have anticipated what she was going to tell us.


We’ll try and get you to 34 weeks.

We’ll deliver via c-section and baby will go to special care.

You’ll need to come back every two weeks to monitor growth.

I felt the room slide. The air was rushing from the room and the words weren’t making sense. But I was supposed to be having a VBAC! I wanted to go the whole hog- 42 weeks was the norm for me. Not 34! This baby was supposed to be small, but perfectly healthy. None of this was supposed to happen this way!

When we left the hospital, I started to google low birth weight babies and four little letters kept popping up over and over again. IUGR. Horror stories of tiny babies, too small to fight to be alive. Too weak. Born too early. I searched for blogs to read so that I could get a better understanding of what we were facing. I joined IUGR support groups on Facebook. I craved information but there was really very little that anyone could tell me.

At our next scan we were told that reduced blood flow was depriving baby of essential nutrients and oxygen, and this was probably the reason why she wasn’t growing. We were told to come back weekly so that they could monitor us closely.

Medically speaking, the care we were given was second to none. Emotionally, I am still paying the price today, 18 months on.

Google was not a good place to be. As my hand rested on my tummy and I willed my baby to move, Google was most definitely the very worst place to be. I read story after story of babies born too early and too small. Babies facing a lifetime of disabilities. Babies who never made it home. And as each growth scan showed us a baby that still was not growing well, the fear and anxiety we felt began to escalate. Nobody could give us any answers and while we understood the reasons why, we were still frustrated and scared.

IUGR Baby story

If our baby was going to need special care, how would we know where that ward was in the hospital? What would happen in there? Would I be able to stay? Would we be transferred to a different hospital closer to home? Would there be any lifelong disabilities for our baby? Why was she IUGR? Was it something I had done wrong? The medication I took to stop the sickness? Did I eat the wrong thing? Too much? Not enough? Should I rest more? Or move more? Should I prepare for the worst? Was my baby even going to make it? Was there a genetic reason for her IUGR? Would there be something one, maybe even two years down the line?

And while our questions couldn’t be answered, we had nobody to even ask them to. Nobody to hold our hand. Nobody to tell us we’d be ok. Nobody to listen.

The IUGR support group on Facebook literally saved my sanity. Writing about my pregnancy helped so much too. Not only was it an emotional release for me, but it encouraged other women to get in touch and tell me their stories too. Some babies made it, and some didn’t.

IUGR Story

I had to focus on MY baby. Getting through to 34 weeks, and then to 37. That first cry in the operating theatre as she was plucked from my body. That first feed. That first smile. First laugh. First steps. First word.

She is here. We are here. And we are slowly finding support too.

There is now a UK Facebook group for parents of IUGR babies and I hope that the members find it of comfort during what can be a terribly lonely and confusing time. There is also the Child Growth Foundation, a charity who reached out to me recently to provide support and advice. The support is out there if you know where to look. I hope to be able to signpost that information and support so that other families that walk this path do so with a light to guide the way. IUGR can be a terribly lonely and frustratingly scary path; I don’t want other families to walk it alone like we had to.

Central Precocious Puberty and How It Affects Our Lives

Central Precocious Puberty and How It Affects Our Lives

Precocious Puberty and its Impact on Our Lives

“Little did they think that at 18 months, their daughter would be diagnosed with the onset of puberty.”

When Holly’s daughter entered early childhood, she noticed puppy fat around her daughter’s breast area. After much discussion, Holly and her partner decided to check it out. Little did they think that at 18 months, their daughter would be diagnosed with the onset of puberty. But this would not be the only diagnosis their family would receive.

Four months into our relationship me and my now husband found out we were expecting another bundle of joy. Already parents to two girls each from previous relationships, at our 20-week scan we knew that our little baby was going to be another girl. This was confirmed by the sonographer and we were elated. Due to already having four girls we knew exactly what treats were in store for us and what to expect. Well, this is what we thought…………

Our daughter was born in March 2011 and we were simply over the moon. Weighing a healthy 8lb 10oz she was a normal chubby, bouncing baby girl and nothing seemed out of the ordinary. As she grew and started to become more active, her body frame started to slim down leaving her chubbiness behind. This is when we noticed what we thought was puppy fat around her breast area. Chatting to my husband and family members with daughters, it became apparent that maybe it was worth getting her checked out by a doctor.

Initially the doctor was not concerned but, as precaution, sent us along to the endocrine consultant at our local children’s hospital. We were not told anything by the GP just that he thought it was a condition called ‘Thelarche’ which is the onset of female breast development. We didn’t really think anything of it and thought maybe it was extra oestrogen that was exchanged at the time of our daughter’s birth.

When we were greeted by the consultant she weighed our daughter and also took her height. She agreed that our daughter was over the percentage she should be when it came to both of these measurements and quickly discussed a condition called Central Precocious Puberty. It wasn’t a long discussion more a passing comment and booked our daughter in for the following week to have blood tests to check her LH and RH levels to determine if she had the onset of early puberty.

This was such a distressing thing for her to go through at the young age of 18 months; however, we are so glad that we went with our gut instinct to get her checked as 5 weeks later she was diagnosed with the onset of puberty.

“This time for us all, as a family, was heart wrenching waiting to hear the results felt like weeks not days.”

e were so devastated and of course started googling the condition and reading horror stories of how tumours pressing against the pituitary gland could be the cause. After the diagnosis, our daughter started hormone injections every 28 days and was sent for an MRI scan and a scan on her uterus.

This time for us all, as a family, was heart wrenching waiting to hear the results felt like weeks not days. The results came back and nothing showed up on the MRI; however, her uterus was the size of an eight-year- old girl. More bone scans were done on her wrist to check her bone development and yet again proved to be older than her years.

Our daughter is now 5 years old and is doing great, still visiting our local hospital for hormone injections every 28 days and has built up a great relationship with the endocrine nurses, she has almost become desensitised to the injections now and takes it in her stride. I tell her she has them because she is special and to keep her little. She does, however, still continue to have mood swings like a pre-menstrual teenager. She can lash out and has real trouble sleeping at night, which appears to be a side effect from her hormone medication.

She needs personal hygiene care during the night and can show some teenage girl traits; greasy hair, outbreaks of spots and body odour. Pubic hair has also become prevalent as time has gone on.

This condition has been hard to get a grasp of. There isn’t a lot of information online and all appear to be from American sources where they use different medications to medicate with.

Our daughter will stop treatment at the age of ten and hopefully go on to have a normal menstrual cycle, although I do worry what the future will hold.

“After a GP referral, consultant appointment and blood testing our worst fears were confirmed; my daughter had started puberty at 7 and a half years old!”

This condition has been a big part of our lives and although manageable hit us with another bombshell in winter 2013. At the age of 7 and a half years, my biological daughter from my previous relationship came home from school telling me that she had found blood in her knickers. On closer inspection it appeared to be period blood. I was completely beside myself thinking, ‘not again, what have my family done to deserve this?’ Trying to hold back my tears and console my daughter at the same time was just unbearable.

I called the endocrine team who informed me that I would have to go through the GP for a referral. I am not going to lie, I was upset at this and wondered, that with another child with a rare condition and the same symptoms, why could they not just see us straight away?

After a GP referral, consultant appointment and blood testing our worst fears were confirmed; my daughter had started puberty at 7 and a half years old! After numerous discussions the consultant gave us a choice whether to let my daughter continue to menstruate or to medicate her with hormone injections. Apparently it’s considered normal for a child of eight years old to start menstruating.

We went home that day trying to fathom how to discuss this with my daughter. She hates needles and really was against the idea of monthly injections, however, as parents we felt like she wasn’t mature enough to have a period and have to deal with that every month (it’s bad enough for us as women). We all agreed that the best thing to do was to start treatment asap and her biological father agreed with this, too.

Obviously, being that much older than my younger daughter, I had to sit down and explain why periods happen. Something that I didn’t want to do at such a young age, however, it was appropriate for us as a family. Even my six-and- a-half- year-old daughter was intrigued.

My eldest daughter continued with the injections for two years but, unfortunately in November 2015, started bleeding again, breaking through the injection. It was decided that in my daughter’s best interest, she would come off the injections as she really did struggle with them, although they were moved to one every 11 weeks they just were not having the desired effect. This was due to her weight and height. She hasn’t had a period now since January 2016 but, her mood swings are all over the place. She looks a lot older than her years and her body shape is like a curvy woman’s.

Although this condition has been a big part of our life we cannot thank our lucky stars that we pop into the hospital once a month and get to bring our daughter home after her treatment, something that other parents aren’t so lucky with.

Robert’s Story

Robert’s Story


Robert’s Story

Robert is an undiagnosed child. Multiple Pituitary Hormone Deficiency has been identified as a part of his condition and treatment is able to be given for this. Here his Mum tells us about Robert’s first year.

I had a problem free pregnancy and at 35 weeks I was stood talking to a colleague when I realised my waters had broken (like something from a comedy film) and I should possibly go and be checked out at the local hospital.

That night our beautiful boy was born and despite arriving safely he stopped breathing and had to be whisked off to the Special Care Baby Unit.

Once I was sorted out and on the postnatal ward I sat there for hours with a little instant picture of Robert, on my drip, being brought cups of tea and toast. I kept asking to go and see him. I kept being told that a doctor wanted to come and speak to us. I was totally naive at this point,oblivious to the fact this could mean something bad. I also remember being elated to get my own room, but with hindsight this was probably also not a good sign.

Hypopituitarism story

A Neonatal Consultant and the nurse looking after Robert that day came to speak to us, as soon as they arrived I realised the game had changed. We were told Robert had deteriorated and was needing a lot more support from the ventilator. He was also floppy, they suspected a brain injury and were cooling him to prevent it getting worse. He looked a bit unusual and they thought he probably had some sort of syndrome. The future for him was uncertain, he might have profound disabilities or he might be relatively “normal”. Nobody could say and it would be a long road before we got any answers.

The consultant delivered the news so clearly and so well but I think my heart broke into a million pieces during that conversation. The fact that Robert was going to face a lot of challenges did not really sink in, I just wanted to know if he was going to live. There was no worries about that.

I wiped my tears and realised I needed to see Robert. A kind healthcare assistant got me sorted and wheeled me down whilst my husband called our families to update them.

I saw Robert lying in his little babytherm cot so small and helpless and cold and I loved him more than anything in the world.

In the next few days instead of the predicted improvement everything got worse and I was scared at one point as the doctors seemed to really be scratching their heads. The plan of getting him off the ventilator was not working, he needed to be switched to the oscillator as he was struggling so much. His blood pressure was very low, and it would only remain stable with cortisol. Robert was tested for various conditions, some horrifying, none with a great outlook, and these tests had all come back negative. A blood test showed his T3 (thyroid levels) were rock bottom which is when a pituitary issue was first suggested. I didn’t know anything about pituitary glands apart from it was something to do with puberty from year nine science. We had a lot to learn.

A doctor who is now Robert’s Endocrine consultant came into the Intensive Care area one day. I stood there baffled as she said she thought Robert had an issue with his pituitary gland, and if medications were given he would be able to breathe without the ventilator. I must say I was a bit dubious but a few days later he was back on a normal ventilator, instead of the oscillating one, and then one day when I went in I was told he had pulled out the ventilator tube whilst the doctors were trying to get blood. When he was nine days old I was finally able to hold him for the first time.

In the next few weeks the massive improvement we had been expecting didn’t come. He was still working hard to breathe and tube feeding was a nightmare. At this point his endocrine issues were stable apart from the fact he kept becoming hypoglycaemic so it was decided he should start on Human Growth Hormone and this seemed to do the trick with stopping his hypoglycaemic episodes. It was hard to inject such a tiny, skinny baby but it has quickly become part of our routine.

After 8 weeks in SCBU Robert was transferred to the respiratory ward in the Great North Children’s Hospital. This was excellent preparation for coming home and we started to feel like he was truly our baby as we were fully responsible for him.

He got home just before Christmas 2014 after 81 days in hospital but that wasn’t to be our happy ending. At this point he had a nasal pharyngeal airway (a tube we had been taught to put down his nose), as it had been discovered his upper airway was floppy. This was a nightmare to look after at home and to be honest he was still quite poorly. He was readmitted in the January and it became apparent a tracheostomy was the best option for him. We were horrified at the prospect but it has been the best thing for him being able to breathe well he was finally so happy.

Undiagnosed and hypopituitarism

He has been through another op, a Nissen’s fundoplication to stop him vomiting all the time and had a mickey button (a feeding tube into his stomach), which again whilst very worrying has helped him enormously. Not constantly being sick means he has gained weight and his development has come on in leaps and bounds.

Robert finally was able to have an MRI scan of his head, which showed his pituitary was not formed correctly. Thankfully the rest of his brain looked OK. This confirmed he did have MPHD as the normal chemical tests were not possible due to him presenting so dramatically when he was born.

Happy Robert

We have been told to wait and see how Robert will develop, as he is overall an undiagnosed child, with MPHD as part of a wider suspected syndrome. We see him making excellent progress all the time and cannot wait to watch him grow and make more memories together as a family. We are sure as he grows his MPHD will present more issues, and we are thankful to have the CGF support group to consult for reassurance and advice. We are fortunate to receive excellent care for him at the Royal Victoria Infirmary in Newcastle.

As well as the CGF the following groups have been very helpful to me and I would recommend them if your child faces similar issues to Robert.


This is an excellent support group on Facebook for parents with a child with a tracheostomy.

Swan (Syndromes without a name)

This group is for families with undiagnosed children. There are also local groups on Facebook who have meet-ups and events.




Finding my voice: from mouse to Mama Bear

By Martha

“Just treat him like any other baby once you get home. He’ll be fine,” said the paediatrician, cheerfully.

“Really?” I thought as I looked down at our newborn son, all saggy skin and strange, long fingers. “Don’t cause a fuss. The doctor knows best,” I told myself. I smiled and nodded, happy to be leaving hospital after a difficult pregnancy, numerous growth scans (which were all ‘fine’?!), and a three-day stay in the neonatal unit to stabilise our baby’s blood sugars after birth. And so began our journey towards understanding the subtle – but profound – effect that SGA has had on our boisterous, infuriating, inspiring, wonderful son, Wilf.

I don’t think I’ll be giving anything away by revealing at this point that the paediatrician’s advice was decidedly unhelpful, dangerous even. But it was a piece of advice that I would hear again and again over the next few years as Health Visitors, GPs, doctors, and teachers failed to listen when I tried to explain that I thought there was something a bit amiss with Wilf.

 “It isn’t reflux unless it flies across the room!” I was told by one Health Visitor as I held screaming Wilf who had just been sick for the umpteenth time that day. And so, I went home and tried my best to breastfeed a hungry, sicky baby.

Newborn SGA
SGA - Small Gestational Age

“He’s nearly one. He shouldn’t need a night-feed any more. Perhaps try letting him cry-it-out,” advised another Health Visitor. And so, I went home with my sleep-adverse toddler and withheld what I now realise were much-needed night-time calories.

 “Hypoglycaemia is rare in children. Come back if it’s still a problem when he’s seven,” said our GP when I took four-year-old Wilf to see him because I was concerned about his eating and growth. (He’s seven and it’s still a problem).

“No, he can’t have any extra snacks because then all the other children will want some,” explained a Reception teacher after I tentatively suggested that his hyperactive and disruptive behaviour in the classroom was worse when he was hungry. And so, I went home and hoped that he would ‘just grow out of it’ like everyone promised, ignoring the little voice inside of me that was whispering, “something’s wrong.”

It was late one winter’s night in 2018, after yet another difficult day when I had been called into school to discuss Wilf’s behaviour, that I stumbled across the Child Growth Foundation’s website. I was feeling pretty low and desperate, but I saw that there was a helpline and resolved to call it the next day. This turned out to be a life-changing decision for our family. A friendly voice answered and I explained my sorry tale while trying not to ramble or cry too much. After listening patiently, the voice said words that I’ll never forget: “SGA is a condition and you need to start thinking of it like that.” Ping! Light-bulb moment! Looking back, it seems ridiculous that, until this point, nobody had explained to me that my son had been born SGA and that this could have life-long consequences.

I spent the next fortnight furiously Googling ‘SGA’ and ‘low birth weight’, getting much of my information from the CGF and MAGIC Foundation websites. I complied a list of the characteristics of SGA children and it was like reading Wilf on a page. Born below the 3rd percentile. Tick. Frequent spitting up. Tick. Inadequate catch-up growth. Tick.  Hypoglycaemia. Tick. Motor skills delay. Tick. Tick, tick, tick… And there, at the bottom of my list: increased risk of ADHD. Tick?

And so, that’s where we think the next stage of our SGA journey will take us. Wilf is currently on the waiting list for an ADHD assessment which we hope will take place at some point in the next few months. I’m sure many parents would be devastated to learn that their child might have a neurological disorder, but I’ve sensed since before he was even born that Wilf would be a bit different to other kids. He dances to the beat of his own drum, and that’s just fine by us.

I’m unrecognisable from that first-time mum who smiled and nodded at the hospital paediatrician, not causing a fuss. I might not have a medical degree, but over the past few years I have become an expert in my son and I’m sure I could give most doctors a run for their money when its comes to understanding how SGA can affect a child and their family. The CGF has been key to all of this. Just knowing that there is a group of people out there who ‘get it’ and will have have your back when you need them has given me the confidence to be the mum I want to be. I’m now most definitely a mum who will cause a fuss. I am a Mama Bear. I am Wilf’s mum: hear me roar! (please. If you don’t mind).

Small Gestational Age

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