Trustees’ Week 2016

Trustees’ Week 2016

We asked our Chair, Nick Child, what motivated him to become a Trustee for the Child Growth Foundation.

The way I became involved as a trustee of the Child Growth Foundation (CGF) is probably quite typical. I had a young daughter who had many medical issues and was diagnosed with a rare growth condition at 14 months old. The CGF were very supportive and the first real physical contact I had was at the CGF annual convention I attended. The convention built some relationships and when the trustee for Silver Russell Syndrome had to stand down to relocate to Australia, I was keen to take her place. I knew that I had some skills that could be useful to the CGF, this included meeting management which is required of a group coordinator at the convention.

I have been fortunate that other skills that I have learnt, in my normal employment, have been applicable and of use to the CGF. These include team building, change management and business planning.

Our Trustees fundraising.

Working with the foundation is challenging, rewarding and fun. Challenging as we have to interact at a high level with growth professionals, pharmaceutical companies and other organisations to raise the profile of the CGF and what we are looking to achieve. Rewards come in many ways including the kind and supportive words we receive from members, achieving funding from sponsors and fund raisers, and outputs from important research projects. The various meetings we have including trustees’ meetings, conferences and exhibitions, and of course the convention have a fun element.

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.

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.

Truks
http://tracheostomysupport.org

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

Swan (Syndromes without a name)
http://undiagnosed.org.uk

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

Diagnosing Multiple Pituitary Hormone Deficiency

Diagnosing Multiple Pituitary Hormone Deficiency

From birth, Cameron had been very unwell. Despite reassurance from Healthcare professionals, Cameron fell unconscious at four weeks old and almost died. He was sent home from hospital a week later, undiagnosed. At a year old, Cameron had stopped growing. His Dad, Stuart, tells their story.

Cameron was our first child and after a very quiet pregnancy, was born foot first breech and 4 weeks early. His birth was very traumatic for him (and Mum!) and he spent a few weeks in SCBU recovering. He had a paralysed arm and had a lot of bruising, which in turn gave him jaundice. He was small at 4.5lbs and also quite thin, with none of the usual baby fat, so they decided he needed to be fed as much as possible to help him gain weight. He was eventually discharged with his arm working again and jaundice gone — with instructions to keep on feeding him as much as possible.

After 2 weeks at home and feeding on demand every 3–4 hours, day and night Mum and Dad were exhausted and when one night he didn’t wake us for a feed, we slept on until 6am. We realised that this was out of the ordinary and given how ill he had been following his birth, we hardly dared to look in the cot. We did though and what we saw was Cameron fast asleep. We had to wake him for his feed, but he was still sleepy and uninterested in food. This went on all day and we had to wake him each time we needed to feed him — and he still wasn’t interested. We asked the health visitor to call in the next morning and take a look at him. We were also surprised to find that he hadn’t had a dirty nappy all that day. We knew something wasn’t right. All he wanted to do was sleep.

The health visitor reassured us that he was fine and was just tired after his traumatic birth….. 4 weeks prior! When he was the same the next day, we asked her to come back again and she once again reassured us he had no temperature and was fine. We should wake him up to feed and give him brown sugar and water which would work as a laxative.

Day 3 and no change, so we decided to take him to our GP. Mum said that she had a feeling something was wrong and despite the HV’s reassurances we needed to get him looked at. The GP said he was dehydrated and lethargic, but had no other signs of illness. The GP said we should take him to the hospital and he would ring ahead to get the paediatrician to look him over.

We got to the hospital and the paediatrician was doing his rounds — 20 minutes later, with Cameron out for the count in his baby seat as per the last 3 days, we walked up to the SCBU with him. The nurses recognised us and were surprised to see us back again. They said he couldn’t be allowed back into the SCBU proper because he had been out into the outside world and could be carrying an infection, so they showed us to another room. Once they examined him, they immediately bleeped the doctor and he was being treated. The doctor said he was very ill and wasn’t asleep, he was unconscious.

That night was the worst of our lives, as Cameron deteriorated and came close to dying. In fact we have been told since that they struggled to stabilise him and he was within 15 minutes of reaching the point of no return. Return he did though and he bounced back by the morning. He remained poorly for another week and after being on a drip for days and a lot more feeding he perked up again and was discharged (undiagnosed). They had no idea what had caused this sudden deterioration, but they had found evidence of a small bleed on his brain having taken place. This still didn’t fit with the symptoms he had displayed though.

12 months later, Cameron had stopped growing. We had never had to cut his hair or his fingernails since he was born and he had very dry skin. We mentioned this at a couple of his appointments with the paeds, but the reply we got was that he was just small because of his prematurity and he was lucky to still be healthy after what he had been through. We weren’t satisfied with this though and once again we knew things weren’t right. It wasn’t that he was small — it was that he wasn’t growing now.

Eventually, we decided to press the doctors further and not be fobbed-off. We had another appointment with the paeds and pressed for a referral to someone who would investigate further. The paed spoke to Dr Gary Butler at Leeds General Infirmary, who suggested certain tests. The results were sent back to Dr Butler and he asked us to take Cameron to see him. He confirmed that Cameron was lacking some of his pituitary hormones and he would like to repeat the tests at Leeds. Sure enough, the tests confirmed that Cameron had MPHD.

Cameron went on to growth hormone at age 18 months and also was given hydrocortisone and thyroxine to take daily. From that day, his growth restarted steadily and slowly and he because more robust and ‘healthy’ looking. We have stuck to the regime since then and after Cameron was also placed on testosterone at age 13, he grew a lot faster. He is now 17 and at college 30 miles away studying software development. He has reached 5’8” and over the years he has taken part in competitive swimming and kick-boxing amongst other sports. He is less active now, preferring to sit at his computer, but he is happy and healthy. He has recently been transferred from paediatric to adult services and has a new consultant and endocrine nurse. He has also now stopped growing and he’s a bit sad about it. After all those years of taking medicines to try and grow, it is hard to come to terms with it being over with. He still has to take growth hormone though and always will.

Central Precocious Puberty and How It Affects Our Lives

Central Precocious Puberty and How It Affects Our Lives

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.

Fabulous Fundraisers

Fabulous Fundraisers

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!!!