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.




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



Toby’s Story

Our son Toby was born premature in July 2007, he has a diagnosis of severe IUGR/ SGA, a clinical diagnosis of silver russell syndrome, and unilateral hip dysplasia. Here is his story.


We were given a IUGR diagnosis at 23 weeks after a couple of scans that showed very slow growth – in particular his femur (representing his body length). We were warned it could be placental and/ or a chromosome abnormality causing this. We had in depth scans to check for abnormalities to try and work out what was going on. The placenta was insufficient but the obstetrician had the impression that this was not the only cause of the iugr. His fluid was normal, baby was happy and active, the size of bladder? Was fine. He said this did not go inline with typical placenta problems. We had blood tests for infection, cystic fibrosis testing and an amnio to look for major chromosome abnormalities. The testing came back normal.

Throughout we were advised that baby likely had a condition, but they didn’t know what this was. Baby was showing no abnormalities except poor growth, mild echogenic bowel and poor movement of hands – mostly in the clenched position. The placenta was more normal at a couple of scans and this caused more confusion as to why the growth was so poor.

At a couple of scans we we told that the baby wasn’t going to make it and at the remaining scans we were led to believe that if he made it out of snicu they had no idea what life he would lead. It really was a heartbreaking time and i really struggled to cope with the unknown. We were offered a late abortion up until his birth on medical ground but we could not make this decision, we still had an element of hope that he could have only slight difficulties. The impression was that an unknown condition was allowing baby to live on little blood blow and only take what he needed to grow.

“Toby was born weighing 680g, way below the 0.4 centile”


At 32.1 weeks after a scan showed reduced fluid, reduced movements, poor blood flow (reversed) and a ECG showed decelerations. I was booked into our local hospital for a c section later that day. However this was made into an emergency as i started to bleed heavily. The obstetrician put his appointments on hold and delivered our baby – i do believe he was curious as to how Toby would be as he seemed to be out of depths with Toby and the unknown.

Toby was born weighing 680g, way below the 0.4 centile. He was classed as asymmetrical iugr as his head was big in comparison to his tiny body. As explained to me this was simply to do with the body being very clever and protecting the head – head sparing. I imagine a lot of his weight was his head. Head was below the 0.4 centile but his tiny body was a long way off in comparison. His head was that of an average 27 weeker, his weight was a 24.5 weeker size and femur was an average 22.5 weeker size and was in proportion to his skeleton – his femur was 39mm 2 days before birth. His length was by far the most restricted. The femur was a lot further from the 0.4 centile than the top of the charts were from the very bottom. Toby had a tiny placenta and a thin cord matching his body size.
He was wrapped in bubble wrap to keep warm, his blood sugar’s were very low so was given sugar fluids and given caffeine to regulate his breathing. This was thought to reduce the risk of brain damage and cerebral palsy. He was ventilated for only 12 hours and then was breathing air. His hands had normal movement (a huge relief). At 1 day old he was put on cpap as he was using a lot of energy to breath and they wanted to preserve his energy. Toby had lost more weight within a day than they had anticipated, he weighed 610g – fluid was increased.

SNICU life, Testing and Genetics

At 7 days old Toby was started on thyroid meds as his was not producing enough at this time. At 10 days old he had presumed NEC (This is infection of the stomach) however blood cultures were negative. He had a lumbar puncture. They phoned us as we were on our way in as he was very sick. Terrifying. The day before he had his 1st feed of my milk, he was given back to back double antibiotics and thankfully avoided surgery as bowel stayed intact. Tpn was needed until he was 28 days old, because of this he then started to have pre-digested milk due to malabsorption so was given trial milks until they found one that he could absorb. His weight gain was a big concern to the doctors, finding the correct milk helped but calorie powder became essential. His length was not measured until 7 weeks of age (37cm -39 weeks gestation). it was obvious from photos how much he grew since birth. The early calorie powder input early on was very beneficial to Toby.

He had a full skeletal x-ray at 5.5 weeks as his presentation was different to other prem/ iugr babies and the worry had continued about an unknown condition. This was to rule out common forms of dwarfism and to check for irregularities. His bones were proportionate. A minor foot bone abnormality was picked up but was of no significance – certainly hasn’t affected long term.

Toby had scans on most areas of his body and he was healthy. He had regular scans on his head. No bleeds thankfully. I was warned they thought Toby had hydrocephalus on many occasions as his fontenaille was extremely wide and his head started to boss at around 5 weeks old. His head also remained alot bigger than his body length yet still just below centiles. I was told a shunt would likely be used to drain fluid. All scans came back normal. No fluid and ventricles in normal range so a shunt was thankfully not spoken about again but regular head scans continued to keep check.

Snicu asked genetics to visit at 7 weeks old due to Iugr, postnatal growth failure, frontal bossing, extremely wide fontonaile, malabsorption, reflux, non working thyroid. They noted relative macrocephaly – with the look of hydrocephalus, transpalmar crease, unusual palate, wide fontenaille but could point to no diagnosis so carried out a micro array – normal. Interestingly before genetics saw Toby his consultant wrote ??SIlver Russel in his papers. Looking back on pictures I can see why. Reading through notes years later it is remarkable how well he has developed – at one point the consultants contacted someone with regards to concerns he had a multi system disorder, mitochondrial disease.

On due date he weighed 1.6kg and was 38cm long, head 31.5cm.

Early Feeding, Physio and Reflux

A physiotherapist gave us exercises to do as his lower limbs were not moving as they should. We worried he would never walk.

Feeding was a big issue. He found it difficult to suck, had coordination difficulties, got tired easily, and took along time to feed a tiny amount. It was obvious he wasn’t going to learn to feed in snicu – the hospital simply do not have the time to feed babies that do not want to feed. From early on he was given a dummy to help him. He was never hungry. I couldn’t understand why my baby didn’t wake for feeds but the other prem babies did. Toby required mostly top ups by tube. In some ways having a baby in snicu helps to get the help they need – early calorie powder, learning different methods to feed a tricky baby, time to learn everything about the baby and the correct meds to go home with.

Toby suffered terribly with reflux and was often needing his sheets changed. The reflux he experienced so young was to continue.

Going home

Toby spent 11 weeks in snicu, 1 month intensive care, 1 month high dependency and 3 weeks trying to feed and grow. He had cpap for 39 days, incubator for 44 days, 2 blood transfusions, treated for jaundice twice and had lots of x-rays/ scans. He would projectile vomit and then desat so would often need extra oxygen. He came home on 24 hour oxygen – a low dose of 0.1. The reason behind this need was because of prolonged cpap – given to preserve his energy to allow growth. He came home with lots of meds and a feeding tube.

1 week after coming home Toby was admitted as he had bronchitis. He stayed for a week – 4/5 days of this with a oxygen box over his head. The RSV vaccination was given through the 1st winter to limit admissions.

I hated the nasal tube. With his oxygen and constantly blocked nose i felt the tube was restricting his breathing. I also failed to learn to pass it and needed to go to hospital for it to be put in. One day Toby pulled it out at around 4 months and i couldn’t get to the hospital. I decided i would work with him to keep it out. I fed him 2 hourly and helped him suck by moving the teat, made the whole abit bigger but very careful to allow the precise amount of milk to drip into his mouth, moving his mouth to keep him sucking and spent however long he needed. He really fed better when half asleep as he had oral aversion to it whilst awake and would cry or spit it out. He just wasn’t interested. Thankfully the maxijul calorie powder allowed for less milk to be consumed. At his next weigh in he actually gained a little and were given permission to leave out as long as he continued to gain. So very stressful and very much my purpose in life at that time was to feed Toby. Soon we made it 3 hourly and if he only managed abit i would make some more and give it sooner than usual. Had i waited for him to want to feed he would have gone hours. 

Toby needed a repeat head scan at just over 4 months. His head increased more than expected at 4 months – a repeat scan showed he had developed a little excess fluid outside of the brain but was not a concern, minor and very short lived so may have been the cause of the jump or may not have been. His length also had an increase and followed the same pattern as before – head much higher than weight and length so it was also presumed that it was mostly normal growth. At 5 months after some catch up with all measurements Toby head was nicely on the charts, with his body paralleling under the 0.4th centile. This would be where he would stay for the next 4 years and i guess where his measurements could have been had he not of had a tiny placenta with a tiny cord.

Reflux he suffered terribly with from early on. I would feed and then have to re-feed as he would projectile vomit and i had to make sure i held him longer, put him down slower to try and reduce the chance he would be sick. His cot was always raised at his head end. Gaviscon didn’t help. We tried omeprazole, ranitidine and domperidone. The winning combination for us was omeprazole and domperidone. He would still be sick but less often.
Toby started solids early due to his lack of interest in milk feeds. Although he gained ok he was very hard work and required a lot of input. I didn’t let on just how hard it was to feed him as i was frightened they would make him have a tube again – i was very panicky about this and developed a fear of Toby getting caught up in it. The feeds were very runny as he would easily gag and then be sick. i would tease it down with the spoon as he was distracted. All feeds contained his calorie powder with oil, butter, cheese or double cream. All food was given that had the highest fat content. I avoided veg and good foods to make sure he was gaining – he simply would not have eaten enough if i included veg and my goal was to increase his weight. He had vitamins to make up for this. I just hope i have caused no long term problems. At the time this was recommended to us, it did work, his bmi was fine. BMI however would have been very low had he not had the input and the tube likely would have remained.

Getting Older

Toby continued to feed regularly around the clock. At 9 months i tried no night feed but i found him trickier to feed in the morning and could not meet the amount the hospital wanted him to have so I started night feeding again.

He was a very sweaty baby, had rapid breathing quite often and was often hard to wake for feeds. I used to turn lights on, make lots of noise. I didn’t want him fully awake but alert enough to feed. I now believe he may have had low sugar’s – thankfully regular feeding helped if this was an issue. The calorie powder likely gave him help against low sugar as used for some children when Ill – this was not the intention of the powder but likely gave us an advantage.

Toby came off oxygen, thyroid meds and was able to have normal milk at 9 months and we were allowed into public places.

Feeding continued to be tricky, we continued with small frequent feeds and his weight continued to increase and not to tail off. He started to wake for a night feed as a young toddler. His added fats and calories continued in all foods as well as feeding wherever he was settled – laundry basket, highchair, with his toys etc. He was easily sick when crying, coughing and a couple of hours after food he would sometimes be sick. At 3.5 he suffered with silent reflux. Even at 11 Toby can still be sick in large volumes if he gets too anxious (not often) and if he has a coughing fit. His 2nd day of secondary didn’t go to plan as i had to explain the sickness from the day before was anxiety and not illness. The sheer volume made them understandably wary.

At 12 months (10 corrected) length was 64.4cm with a head c of just under 45cm. at 2.8 length was 82cm and head c was 48.5cm.

Toby crawled at 14 months and was signed off of physio at 19 months when he learned to wobble walk (yay). This was also when physio signed him off – i am very thankful for the support he received to help him reach these milestones at a good age.

Head shape continued to be a concern to me as his boss was very protrudent/ bossed or the medical words used to us was frontal bossing. Between 1 and 2 the bossing became more obvious – it came out further than the nose, as soon as he could grow a fringe he had one. I often noticed looks and became quite paranoid. Over the years the boss become less obvious and from age 9.5 it went from barely there to nearly gone – amazing how children can grow into their shaped head.

Toby became a big brother at 2.1. We named her Daisy-mae and she had very different birth stats – length on 75th, weight 25th and head between 2nd and 9th. She was very greedy, had no reflux and i was actually asked to diet her as she became very chubby. Daisy was very smart – a good talker, witty, creative and they soon played alongside each other – it was very much like having twins for a while. Toby’s development was very similar to Daisy once she got to around 18/ 24 months and have remained best friends.

At 2 he had an op for umbilical hernia and a bilateral orchiopexy for undescended testicles.

Growth Hormone

GH was started at 4.4 under the SGA UK license as it was unlikely he would get onto the centiles without help. He had all testing done to make sure nothing was compromising his growth and GHD was ruled out due to his growth pattern without the need of a stim test. Toby wasn’t growth hormone deficient but growth hormone insufficient as i understand it. He was just under the 0.4 centile. He looked so small in height and stature and i often had comments about him being at school. Within a month we noticed his appetite increase – this fitted in with school well as i was worried with how he would consume enough. Toby was able to walk further within a few months ( he used to tire easily and was often in a pushchair, physically he was so much healthier). Toby settled in nicely to taking the injection. He used emla cream to start, then ice and after about 6 months he had nothing to numb the area. At the age of 11.66 Toby is 145.3cm – amazing – just under the 50th i believe!, strangely enough Toby’s head is now lower on the chart than his length. We do not have a big headed family and his development is so good i’m not overly worried.

School, Speech and Physio

School was making Toby very tired and grouchy. This was probably to do with full time school and not snacking. Our endo was brilliant and gave us a letter to give to school highlighting that he needed to snack. He was a different child and able to cope better. He could snack from his snack box when he wanted. His height progressed onto the centiles. At around 5/6 school stopped offering snacks and on a couple of occasions we were told he was acting drunk. Again a letter was given and he was able to snack. Again he was less grumpy at the end of the day.

Toby struggled in school with concentration, processing info and memory so he had an IEP. He was very young in himself and i believe he was put into school too early. Thankfully over the years he is catching up as he is able to concentrate better. Speech issues from early on hampered his early education start. He was slow to start talking and once he could talk he struggled with pronunciation, he had very good understanding though. We learnt at 7 that he could not move his tongue side to side or up due to low tone of tongue. After daily exercises and a lot of work he can say all sounds and only cannot move tongue up now. He will still sometimes slip up with his speech if he’s hurrying or excitable but his pronunciation is great.
Toby wears glasses and did wear a patch on his left eye as his left was weak and would turn out, more so when tired or daydreaming. He no longer has a squint.

Toby has had problems with low tone/ mass especially in his legs and core. His limbs were tiny in mass. When starting school the teacher was so concerned with his physical development that he was referred to physio and had very intense physio at home and at school for a year. He was uncoordinated, struggled to sit up in class, couldn’t jump properly, lean out of his base of control and was a long way behind his peers. Toby has generalised hypermobility of joints and hyperextension at knees. He has been seen by physio on and off since and is currently now on long term physio of which we do at home with concentrated exercises/ stretches. His stomach muscles separated at 9, we used tape to encourage them in and it worked with the exercises he was set to do. He had to learn to use both sides of his body equally. Physio was quite concerned as physically he was really struggling, walking long distances would cause a lot of pain. Age 11 we now know that the most essential part to keeping him healthy and strong is to keep him very busy to keep his muscles working well. He needs more activity than the average child his age. Toby has very tight lower muscles, nowadays a lot of his physio revolves around stretching his muscles and developing his core, hip muscles. He is physically good at present and one of the quickest long distance runners in his year.

Hip Dysplasia and Scoliosis Concerns

At age 10.5 Toby had an xray to look into why his pelvis was tilted. The x-ray unfortunately showed that Toby has left side hip dysplasia. A shock as 1st to occur in our family. We were referred to orthopaedics and was initially told Toby needs his femur and pelvis operated on in the next 6 months. After an MRI it was decided that an operation will wait. His age makes it tricky as well as the degree of dysplasia. The proposed operation would not have done the complete job. With major surgery the child needs to be symptomatic. Toby is now symptomatic, a steroid injection has worked so surgery will be discussed soon – wait and allow the pelvis to mature or to operate. The femur is slightly unstable at this moment apparently so very nervous as to the next steps. The orthopaedic consultant also noted mild scoliosis, as did genetics. It is visually very subtle with the only thing being that his shoulders can be at slightly different heights. An x ray showed minor scoliosis and an MRI showed minor lumbar and mild thoracic scoliosis. Spinal team however said its very mild and thinks it could be to do with his hip. He has been signed off as no need for a brace at this time and we are to call if we notice any changes – it hopefully will not progress. Toby does however get some spinal pain but likely to do with his muscles over compensating from his hip. Toby has nearly a 1cm discrepancy of tibia but this does not include mass and quite normal in today’s population so not considered SRS related.

Genetic Testing and Diagnosis

Toby has always been a mystery from the word go. He was once described as a puzzle they cannot complete. Testing and waiting is something that we have had since birth and everything comes back normal. amnio, 2 x micro array, ddd study, 100k study, imprinting disorders – finding out why. A condition that suited Toby very well and one i thought was a good possibility also came back normal. Silver russell syndrome, tested twice. Getting a diagnosis has been hard. Its complicated with Toby as he was so tiny at birth and had complications. He also never had his length plotted at birth which was by far the most restricted – pregnancy scans show the true level of his IUGR.

The most familiar diagnosis to us has been ?SRS which is the most frustrating diagnosis. ? = no one knows. I completed the magic screening for SRS – sending younger photos and measurements, it came back that he scored 5/6, that he resembled a couple of 11p15lom boys. I asked to see genetics again as i wanted the diagnosis to go or to be given a clinical. Toby was given a clinical SRS diagnosis with the opinion that the problem is mosaic making it hard to pin point. We were then invited to be seen by Professor Temple for a 2nd time alongside Dr Davies. If you get the opportunity for a review with two professions with so much SRS knowledge you do not turn down. I knew his clinical stood a good chance of getting taken away. It didn’t, Toby kept his clinical scoring 5/6 (no to asymmetry) with all conditions similar having been ruled out. Toby’s DNA is being sent to Professor Netchine in Paris to go on the SRS gene panel. It could be that the diagnosis will one day change like any clinical can but for now we know what to look out for and we have a diagnosis that will allow for monitoring and care.

Secondary School

At age 11, Toby is doing amazingly. He did need a 2nd operation for bilateral orchiopexy of which was hugely successful at 10. He has bladder meds for urinary frequency that is helping, he takes meds for constipation. At school he is continuing to do very well. He passed 2 of his 3 sats and is continuing to improve on grades in secondary. I honestly have no concerns. He loves to read and always tries very hard. He is still young in himself (quite innocent) but thankfully has no long term issues from his early start. He is quite sensitive and will always go above and beyond for other people/ very much a people pleaser. Very kind and sweet natured who loves interaction. At one point very cuddly/ tactile and we worked with him at home and school to learn social boundaries/ cues and he is so much better now. He can be obsessive over his interests/ hobbies – this makes him who he is. He is very fun, creative, chatty, sociable, confident and his job desires for the future keep changing. He loves to shake peoples hands when he meets them and loves to be centre of attention on stage. He is a good skier and more recently has taken an interest in running – it does still aches his legs but he is used to some discomfort and wants to be at the front – he is competitive and the running is becoming one of his interests that will most likely stick until his hip disorder makes it tricky. He was elected onto the school council after a online pupil vote. He has represented the school in sport, ran in the cross country event, read at the harvest festival in front of other pupils and parents and represented the school in a boccia tournament. We are so proud, as we are of his sister who has grown up in with an older sibling who has needed so much more attention yet is turning into a lovely nearly 10 year old.





An IUGR Story

This story, written by Mum Lorraine, is about her daughter Evie’s IUGR journey.

When your baby is diagnosed with Intrauterine Growth Restriction (IUGR) you cannot help but Google and I found Google only gave me more questions rather than answers. You want Google to say ‘all will be fine’ but Google can’t as there are so many reasons why your baby may be IUGR, so many differing causes, and the reason why your baby is IUGR is what will determine the prognosis and potential outcome.

My daughter’s IUGR was picked up at the 20 week scan, along with an echogenic bowel, oligohydramnios (low amniotic fluid) and two vessels in the umbilical cord instead of one. I was warned I may need to make a decision on whether to terminate the pregnancy and referred for further tests.

Evie with tube — in NICU, 1 day old

After three long and scary weeks of tests, including a specialist foetal renal scan in London to check her kidneys and a CVS (which ruled out genetic conditions which were ‘incompatible with life’), the conclusion was that the IUGR was being caused by placental insufficiency. What caused my placenta to not form properly we still don’t know, but as a result my baby wasn’t receiving the nutrients it needed to grow.

I was advised that outcome was unknown. I was prescribed daily asprin, fortnightly scans and fortnightly urine/blood pressure tests. Every fortnight I would arrive at the scan wondering if today was the day I would be told baby had stopped growing and we would need to deliver.

Somehow my little fighter made it to 36 weeks gestation and was delivered by c-section weighing 4lb 1oz, which meant she was classed as Small for Gestational Age (SGA).

She is now 4 years and 8 months old and is a cheeky, stubborn, independent happy little girl, no different to all her class mates!

She is asthmatic, she tends to catch most bugs going and this has often resulted in hospital admissions for IV antibiotics but apart from that her health is good. Evie has always had feeding issues (which is common in IUGR/SGA children) and she now has prescription milkshakes to ensure she receives the nutrition she needs. She is now also receiving growth hormone treatment as her growth has not caught up.

Physically and mentally she is meeting her milestones, doing well at school and her speech is where it should be. She does not need extra support at school (apart from a footstool to reach the sink).

Evie was  6 days old when we took her home — we had to put blankets behind her in the car seat to fill out the straps as we couldn’t get the straps tight enough to her.

Receiving an IUGR diagnosis is scary. To not know what caused the IUGR is an added worry. The vast majority of IUGR/SGA babies catch up. Some, like Evie, don’t. I found Health Visitors and GPs didn’t really understand the intricacies of an IUGR/SGA diagnosis and what that can mean for some children and their families.

I found myself googling even more after her arrival and thankfully found the CGF two years ago. To talk with parents who understood and had the same challenges with their children was a great support.

IUGR/SGA with failed catch up growth is, thankfully, relatively rare and often hard to find more information about, which is why I chose to share Evie’s story, in support of the Child Growth Foundation and the hope that we will raise awareness and reach more families and provide them with the listening ear and support that they are searching for.

Evie on first day of school, at 4 years 4 months




Georgia’s Story

Living with Silver Russell Syndrome

This story is written by Jenny, who works for the CGF, in it she talks about her daughter, Georgia.

I thought I’d start with a brief history of Georgia’s first 18 years. It is hard to believe that in September last year, Georgia turned 18 years old. She has come a long way from the baby born at 36 ½ weeks, weighing 3lb 12oz.

The first three years were so difficult; looking back it is hard to imagine how we actually coped with it all. Our daughter Chloe wasn’t even 2 years old and Jessica was just age 6, when Georgia was born, so it was very difficult trying to juggle family life with all of Georgia’s difficulties. But we managed, somehow, and we are sure that Jess and Chloe are much stronger because of those early years. They have both grown up to be very caring and currently both work with children.

Even though Georgia was tube fed from birth, she only weighed 10 ½ lbs on her first birthday. She had a gastrostomy at age 2 ½ years and continued to eat very little orally until she was around 5 years old. She didn’t walk until she was 3 years and 3 months and at this time, weighed around 16lbs and her height was just 76cm — not even on the page of the growth chart! She started growth hormone at age 3 ½ and really from then on, her general well being started to improve.

She has always been a very sociable girl and always so happy. Nothing seemed to get her down, even the endless rounds of tests and investigations. She is still the same today.

Georgia also struggled with speech and language and had intermittent input from a Speech and Language Therapist until around 6 years old. At this stage she still wasn’t really talking, so we took the Local Education Authority to tribunal to enable Georgia to have therapy through her statement at school. We initially paid for this ourselves, but won the tribunal, so the LEA then funded one hour of therapy every week until she left secondary school last year.

Georgia now attends 6th form in a special school and loves it. She started at the nursery at Wilson Stuart, before going to mainstream Reception. She then went to mainstream secondary school and had one to one support for a good proportion of this. Last September she started back with Wilson Stuart and is getting a lot of support. She has just completed work experience with a local theatre and had a brilliant time. She can stay at Wilson Stuart until she is 25 if she chooses.

Georgia was diagnosed at 14 months old with RSS, although this was only a clinical diagnosis. At that time there was only one known genetic cause and that was MUPD7. Georgia was tested for this and it came back negative, but because Georgia ‘ticked many of the boxes’, it was still felt that Georgia had RSS. Less than 10% are actually diagnosed with RSS MUPD7. The second genetic cause (11p15 lom), was discovered many years later, so in 2008 Georgia was tested for this.

This also came back negative, but it was decided that Georgia should see the geneticist again. She had more tests and at the same time took part in a research project with Dr Renuka Dias in London. The results came back and Georgia had tested positive to RSS MUPD7. Testing had moved on considerably since 1998, and the interpretation and diagnosis much more detailed. It was a relief to finally have an official diagnosis, although it didn’t really make any difference, to the management and treatment, it was good to have answers.

Georgia started to eat enough orally by the age of 11 years, so the gastrostomy was removed. Since then, her appetite has been great and she eats a varied diet and is always happy to try new foods.

Georgia had major problems with hypoglycaemia as a young child and was hospitalised many times. The worst occasion resulted in 999 call because Georgia fell into a hypoglycaemic coma and began fitting. This was extremely serious and it was touch and go before she was ‘out of the woods’ — a very scary few hours. On a positive note though, Georgia’s hypos were taken very seriously and she was then referred to Birmingham Children’s hospital under the care of Endocrinology; a very hard lesson for us all though.

Georgia’s first 18 years have been a roller coaster for all of the family. She continues to have difficulties, but she tries so hard and is very determined. One example of this is that Georgia decided to give up meat and ‘junk food’ for Lent. So for 6 weeks, she didn’t eat meat, crisps, biscuits, sweets, chocolates and many other things. She stuck to this 100%, even reading the label if she thought there was a chance of meat being in the ingredients.

Georgia’s final height is 5’ ¼”, which is fantastic. Without growth hormone, we suspect her final height could have been around 4’5”. She has really changed in the last 12 months and is much more mature and copes much better with day-to-day life.

Georgia continues to have a few medical difficulties. She has had ankle braces now for many years and this year started to wear knee braces to stop her knees giving way. In addition, she now needs to wear insoles again. These aids are due to hypermobility. A few years ago she had many falls, which resulted in many visits to A & E with many ankle sprains and one fracture. Thankfully, all of these orthotic aids appear to be helping. She still gets a lot of pain though, but this is usually controlled with paracetomol. Georgia is also still under an orthopaedic surgeon, due to kyphosis, scoliosis and lordosis (various curvatures of the spine).

Kyphosis is her main problem, but thankfully following her latest appointment, the curve has not progressed further. Hopefully this will not cause her any further problems. She is due another review in May 2016. She also has a follow up in August with the Cardiologist and we hope that this will be problem free.

To investigate Georgia’s growth hormone levels, she had an Insulin Tolerance Test a few months ago. Her IGF-1 levels have been low and she gets very tired and struggles to keep up, often falling asleep after school. The results of the ITT were that Georgia showed a peak GH of 5.7 mcg/l (possibly slightly borderline for childhood GHD but normal for adults (Normal Range >3)). Cortisol was normal. The outcome of this is no treatment at this stage but continued monitoring.

I hope this update and history of Georgia gives some reassurance to some of you who have little ones. Georgia had such a poor start, but has astounded us throughout her 18 years.

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