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.
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.
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.
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.
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 myself 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.
We 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.
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.
Having recently raised a whopping £1,220 for the CGF we asked member and mum to Olivia, Kelly Biggs, to fill us in on how, along with her family and friends, they raised such a fantastic amount!
Why did you want to raise money for the Child Growth Foundation?
We felt very privileged to have had (and still are) getting so much support and advise from the Child Growth Foundation, they have literally been our life line. Knowing you are not alone is such a relief. Through the Facebook group CGF members themselves are always there to offer advice and quite often a shoulder to cry on when times get tough. We felt strongly we wanted to give something back and contribute to keeping the charity going for many more years to come so other families like ours get the support they deserve.
There weren’t many people apart from immediate family and very close friends who actually knew we had concerns about Olivia’s growth or that she was even being investigated, we just smiled politely as people quite often commented on her tiny size. We knew by fundraising we would be opening up about what we were dealing with and face the many concerned questions regarding Olivia’s health. It happened by complete coincidence when Olivia had been admitted into hospital. Olivia came home after discharge with an ng feeding tube. The questions we predicted were being asked so we thought it was the best opportunity to make people aware of our situation and how important CGF had been to us over the past almost 2 years.
Where did the idea of a Sponsored Toddle come from? And what is a Sponsored Toddle?
We wanted to do something fun for the children to get involved in so my family and I thought of a few different ideas over the following weeks, there was lots of different ideas flying around at first but I wanted to make sure whatever we did was going to bring in the best possible amount of money.
We originally planned for a “toddle waddle” for around 30 children. The idea was to walk the children a distance around our local park and charge £10 per child to attend, in effect raise £300 for CGF.
How did you organise the event? Who did you involve? And how did you find your sponsors?
We thought deeper and had a little brain wave! We decided we could hand out sponsor forms to each child taking part and they could then collect sponsors from their own family and friends. This then turned a “toddle waddle” into a “sponsored toddle”!
With that we scrapped the £10 charge idea feeling we would raise more from sponsors and didn’t want to put people off by asking for an entry fee plus sponsors! I set up a Facebook events page and invited all the children from our family and friends along.
What happened on the day itself?
We didn’t just want to turn up at any old park walk around then go home. We wanted it to be a fun filled for the children. I contacted our local park which had a farm and spoke to the Events Organiser, she advised us that a local craft fair was due to come in the following weeks and it would be a great day to have our toddle.
More thinking and the idea of a big picnic after the walk was then put into place, what a great way to unwind and rest their tired little legs! One phone call later and we also had the use of the farm at discount price. The idea of just a sponsored toddle was becoming bigger and bigger and before we knew it we had a whole afternoon worth of fun. My sister offered to do face painting before the walk, we had our picnic planned, I organised farm passes, bought balloons on sticks and made lots of sweetie bags!
How much money did you raise and how did you collect the pennies?
We raised a massive £1,220.00. Most of our donations were made through a Just Giving page we set up and the rest was collected in after the event. I gave a desired date of two weeks after the toddle as I knew how important and beneficial it was to the charity to get the money raised to them as quickly as possible so they could use it accordingly.
This isn’t the first time you have raised money for CGF, how else have you fundraised?
We did some small fundraising events prior to the toddle and for us that was a good starting point, we had people on board and everyone wanted to help.
I used the CGF small change box in my work place and added chocolate treats for a donation, this raised nearly £30. At Olivia’s 4th birthday party we held a cake sale which was very kindly financed by a close family friend, Lauren. This event raised a larger amount of £75.
I began dropping ideas of bigger events and everyone said they would help in any way they could. Before we even began to plan we knew we had the support.
We asked Kelly to share some simple ideas on how CGF members can help raise money for the CGF
Your child/children’s birthday — take the opportunity to sell cupcakes at their parties! Pop a cocktail stick in the top with a CGF sticker attached to either side to give that extra touch and spread awareness! It’s a great way to make a few quid and no one minds throwing a small donation in for a cake.
Chocolate sale in the works staff room — anyone will make a small donation for a chocolate bar especially on a Friday afternoon! We got a six pack of Twirls for just £1 at the local Home Bargains, we split the packs and added stickers which were kindly posted out by CGF, a good return was made.
Do your children attend after school club such as swimming, martial arts or football? Why not try a sponsored activity? Get the whole team involved with a sponsor form each! Set a target such as number of metres swam. Or a kick-a-thon at martial arts class? 100 kicks in 2 minutes? Maybe hold a Charity five-a-side football match charging a ticket price? Great one for the Dads too!You could also do a few ‘spot the ball’ cards whilst their playing or a hotdog sale to raise extra funds?
Do you have any further plans to fundraise?
Our family and friends are very much aware of how passionate we are about CGF, how very close to my heart it has become and what it means to us as a family to give something back. We had such a fantastic day at our sponsored toddle with lots of excellent feedback and questions of “can we do it again” well the answer is yes! We’ve decided to do it again next year, and hopefully make this an annual fundraising event which can only get better! The support we’ve had from family and friends has been amazing. I’m bursting with happiness at what we’ve achieved and feel so proud of all who was involved, we couldn’t have done it without them.
A massive thank you from everyone at CGF to Kelly, Olivia and your family and friends for all your support and fundraising efforts, you are true superstars!!!
For Growth Awareness Week member, Laura, writes about her son, Samuel, who was born 11 weeks early. Most premature babies catch up so Laura never questioned Samuel’s growth until he was referred to an Endocrinology team, at age three, to monitor his growth rate.
On the 30th March 2011, 11 weeks before his due date and weighing 820grams (1lb 13ozs), Samuel made a dramatic entry into the world.
Two days earlier during a routine scan at Solihull hospital, the team discovered that Samuel was not growing and probably hadn’t done so for two to three weeks due to an absent end-diastolic flow. I was immediately transferred to Heartlands hospital in Birmingham where they promptly diagnosed that I was suffering from Pre-eclampsia.
Following a forty-five minute emergency caesarean section operation performed by an eighteen person medical team led by Mr Mike Wyldes, Samuel let out a small cry as he was delivered and ready for the fight that lay ahead. He was soon whisked away to the neonatal unit where he would take residence for sixty-eight days.
Samuel was extremely strong, having been placed initially on CPAP to support his breathing as a precautionary measure, he was breathing by himself within twenty-four hours. My condition however, got progressively worse, being diagnosed with HELLP syndrome, my liver was failing and my blood was not clotting properly.
After 24 hours, my condition thankfully stabilised and once able to prove to the midwives that I could get out of bed unaided, I was allowed to go and see Samuel. He appeared so fragile, his body covered in many wires and tubes. The nurses carefully took Samuel out of the incubator and placed him on my chest for some Kangaroo Care (Skin to skin contact). This was to become a daily routine.
We were warned that a premature baby’s journey in Neonatal was akin to a rollercoaster. During the first week Samuel did not tolerate breastmilk and had bile in his stomach. He was required to remain on Total Parental Nutrition (TPN) in which essential food is fed through long lines into a child’s body.
Two weeks after his birth, Samuel started to tolerate milk and the Doctors decided that they would remove Samuels TPN. Something was not right, I could see Samuels heart rate increasing and his temperature rising on the monitors. Then Samuel’s apnoea monitor sounded an alarm, Samuel stopped breathing. Emma, the neonatal nurse gently rubbed his back and he started to breathe again. However, Samuel stopped breathing again moments later, and having suspected an infection being caused from the TPN line, Emma had already summoned the doctor to assess Samuel and address his condition. The Doctors and nurses immediately placed Samuel back on to CPAP together with a course of antibiotics in order to fight the infection.
Samuel needed to gain weight, this would be a slow process and was always commented upon by doctors during their rounds. Whilst in the incubator, Samuel was fed breast milk which had been fortified. His weight soon increased, but once he weighed enough for a cot, his milk was no longer fortified. Unfortunately, whilst in the cot Samuel actually lost weight and the hospital assigned a dietician who decided that Samuel should consume High Energy SMA.
Samuel began increasing in weight with this new milk and was finally discharged from the hospital. Whilst at home, Samuel continued with High Energy SMA. Although not a great feeder and being sick often, Samuel did put weight on, finally achieving the 25th Centile.
Weaning Samuel was difficult and it was during this period we discovered he has quite a strong gag reflux. He would often be sick, even on pureed foods. We had to ensure Samuel consumed the correct quantity of food so as to not be sick. Nappy bags soon became a great form of sick bag (and we still carry them around today!), sick bowls would be placed in several locations around the house in case of an emergency.
Samuel’s Neonatal consultant closely monitored him, even though he was increasing in weight (albeit very gradually), his height was not increasing. We had always been informed that ‘catch up’ growth would probably happen in the first two years. Samuel never caught up with his peers.
At eighteen months old, Samuel was no longer taking high energy SMA and instead he was given Fortini supplements. This continued to make Samuel sick so we took the decision to stop the supplements. Samuel still had support from the dietician until the age of three, but as Samuel was at least eating regular meals, the dieticians felt there was nothing further they could do.
When Samuel was younger he struggled to fight off infections. When returning home from my first ‘back to work’ day, I noticed that Samuel was struggling to breathe and I took him straight to the GP’s who advised to take him straight to A&E if his condition worsened. That night was spent in A&E (a winter was never a winter without a trip to A&E).
At three years of age, the Neonatal Consultant referred Samuel to the Endocrinology team at Birmingham Children’s Hospital. We were really hoping that Samuel would be discharged from his care (by this time all of the other children who I had met while Samuel had been in hospital had been discharged). We never really questioned Samuel’s growth before this, we knew he was smaller but there were some possible explanations. Firstly, Samuel was born prematurely, secondly, both sets of grandparents are not particularly tall and thirdly we actually believed that he would ‘catch up’, he just needed time.
Samuel’s initial Endocrinology appointment was fine, a decision was taken to measure his height accurately for 6 months so that the consultant could monitor him on a height velocity chart to understand his growth rate.
During the next appointment, I felt Samuel had grown by less than one inch in 6 months. His health hadn’t been particularly great over the winter period. We discussed the next steps with the consultant and had to take the decision whether to start testing for growth hormone deficiency now or in 6 months time. We made the decision to start the testing right away.
The Stim test concluded that Samuel was Growth Hormone Deficient, so a second test was arranged, the arginine test. The results of the second tests resulted in Samuel being diagnosed as being Growth Hormone Deficient. On the 31st July 2015 Samuel was injected with his first dose of growth hormone. The decision for growth hormone centred on wanting to give Samuel an opportunity and if this did not work then we could be satisfied that this avenue had at least been explored.
The first three days were tough with many tears and tantrums. Honesty has been the best policy with Samuel by explaining to him why he requires growth hormone. Samuel is fantastic with the injections, taking all in his stride without a single complaint.
An MRI scan arranged by the Endocrine team discovered that Samuel has a small pituitary gland.
Samuel has now managed to be recorded on a growth line, although the 0.4th centile is was a level that he had never reached before. Samuel’s health has dramatically improved, no sudden trips to A&E (touch wood) and no need for the frequent use of inhalers.
Samuels weight is still of concern, having only gained three-and-a-half pounds in one year. We are trying to obtain another referral for a dietician and for a physiotherapist (as his gross motor skills are not at satisfactory levels, Samuel struggles to push the pedals of a bike).
Samuel is also being checked by a genetics team. A micro array test result was clear, the team are now testing for Russell Silver Syndrome.
Recently Samuel had his first operation in which two cysts removed from his mouth. He was incredibly brave and the hospital were fantastic.
Samuel is doing extremely well at school and he work very hard. However, he does often get frustrated with his peers because they are too young to realise that every one step of theirs requires two from Samuel and all of the various medical appointments or tests that Samuel has to endure. Other five year olds do not realise that by calling Samuel ‘small’ or ‘a baby’, it affects him and he’ll ask ‘Am I getting bigger? ’.
Samuel is now five years old and although he is currently diagnosed as being Growth Hormone Deficient, he is never disheartened and never gives up. A truly courageous and special little boy.
For 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.
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.
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.
NICE have published a quality standard for faltering growth. CGF trustee, Rachel Pidcock, was a lay member on the specialist committee and contributed towards the guidelines, the CGF was also a stakeholder in its development.
NICE quality standards identify high-priority areas for improving care and support in certain areas, the development of a faltering growth standard is an incredibly positive forward step.
The quality standard aims to improve the identification, management and support related to faltering growth and can be found at the link below.