The reality of being different in stature can sometimes take its toll emotionally, as I am sure many of the CGF members will agree.
Although, I am supposedly of average stature, I think that we can always pinpoint the things that make us unique, that are not always considered quite ‘OK’ with the rest of the world. My ‘difference’ is to always have been the ‘short, fat girl’ and for others it could be the lad with the big ears or even the Muslim girl with the funny scarf. But, unfortunately, whatever difference we may have, it is usually the visible ones by which we are judged.
I am lucky enough to have a fantastic daughter; Jessica aged seven, and an incredible son James, aged eleven, who is categorised with having Hypochondroplasia. I say categorised, as I wonder how much naming a condition contributes to making us feeling even more different. However, James is James is James and no matter how much I worry, he will be who he is, but maybe my attitude to difference has rubbed off just a little. Luckily or unluckily sometimes, I am a counsellor (therapist) and although this allows me to see the bigger picture and relieves some tensions, it also opens up a lot more issues that many will not be aware of, relating to human personality development. BUM!!!
On a chemical level, we are made of the same stuff as the stars and the daffodils in the garden. We look out and adore the beauty of difference and yet we persist in making difference in humanity negative. Quantum Mechanics means ‘fixed scientific’ facts are no longer fixed, and we live in a world where we might touch the table and feel a solid thing, but know the molecules move constantly. Perhaps this new knowledge will filter down through society and allow us to not judge ‘difference’ by such fixed and blinkered categories.
... was not ‘diagnosed’ until he was nine months old, as luckily, his difference has not caused any medical problems. He is normal, and has always been treated as normal - including having the same rules and expectations of someone of his age. He can’t reach, so has been brought up with stools and adjustments have been made to the family way of living to accommodate his and our needs. He is respected and loved, but most importantly, he recognises that he is himself.
I was worried when James started school, experiencing all the anxieties that I am sure all parents have, but with the added dimension of, ‘Will the staff understand?’ We have always discussed James’s difference with people before they begin making assumptions, or treating him differently. This gets issues out of the way, before it becomes a secretly discussed problem for James or those around him. At his first parent-teacher consultation, his teacher told us that in his first week, aged four, he stood in front of the class and told anecdotes, and that he was always ‘up front’ when someone commented on his height.
James’s height is part of him, and he values that by associating himself with short heroes. Thomas the Tank Engine is the smallest engine, Asterix is brave, strong, and clever and Frodo Baggins saves the whole of Middle Earth through his strength of heart and his ability to go un-noticed. These have carried him through and always give him an answer when someone comments.
I laughed and almost cried the other day when I overheard a conversation between my children. Jessica told James that she could reach something that he couldn’t, as she is now taller, and James responded with something about him being able to get into small places to get things that she loses and is too big to fit! His tone was of pride in his difference.
Self-esteem is about valuing ourselves. Whoever we are and however we see ourselves as different, it is whether you value the difference that dictates how we are in the world. James is never ignored, and because of his honesty with others about the reality of his difference, with comments like, ‘Yes, I am short. Is that a problem for you?’ Or ‘What’s different about you?’ He is rarely judged as lesser. We can almost advertise ourselves as being ‘something’, and that attitude is then taken on by those around us. In my experience of counselling clients, often victims help continue a cycle by attracting those who want to victimise. Controllers seek those who can be controlled. If you see yourself as normal and good enough, often others follow suit. If we respect and love our children, they will take much of that with them as they leave us behind.
I would like to point out that James isn’t averse to making the most of his size either. He has learned that ladies particularly enjoy a ‘thank you’ hug. Having reached the beginning of those raging hormones, he quite appreciates being hugged to ladies’ breasts and finding that he is at the right height for a good nuzzle.
He is about to transfer to his senior school and spent two days there as a taster. I was relieved to hear that when he went in the canteen and all the girls stopped to stare. He said that, “It was really embarrassing mum, but the teacher said that it is because I am cute, so at least I’ll get lots of hugs from older women.” We chuckled loudly.
I know that James will be devastated at some point, especially if he is overlooked by potential girlfriends, etc. I think the most important thing to remember is that, even when it’s really hard and height is an issue for others, that there are always people who see beyond the superficial. We all experience negative parts of life but can look on it as a chance to learn for us to get through harder stuff. No matter how bad it feels, we can get through it, grow stronger and have the courage to seek the things we want.
Have a good day... unique people have so much to offer. Difference is what makes us humans so fantastic!
Robbie started nursery in September 2009. Having put in our application nearly 12 months previously, we were pleased he was offered a place at a main stream nursery attached to a fantastic school which our daughter attends. Plans were put into action before last summer, with the support of the head teacher, the nursery team and the Specialist Inclusion Service we couldn’t have asked for more.
Various meetings took place even before Robbie stepped through the door on his first day in September. To say we were anxious parents is probably the biggest understatement ever. We were worried about everything, not only because our little boy was starting 'big boy nursery', we were worried about how people (adults and children) were going to react to the new small person, how Robbie would get on physically with his Achondroplasia, also emotionally and not to mention his speech delay with, at the time, his one word communication. We shouldn't have been worried; he seemed one of the most confident children there! He happily walks in at the front of the queue each morning and we are lucky if we get a bye bye from him! At Christmas he was bombarded with cards (mostly off girls!) and he was apparently one of the most enthusiastic when it came to the first PE lesson.
With the assistance of various professionals and some effective shopping, Robbie has some fantastic things to assist him at nursery including an adaptable chair for him to sit comfortably at the desks, scissors for children with restricted growth, a peg at a lower height and a really great plastic step which has two levels. One of our concerns was the uniform he would have to wear with his short arms and legs, but after speaking with the local school uniform shop they had made to measure in the factory, jumpers and polo shirts especially for Robbie. There has also been massive progress with his speech since starting nursery and with the help of a private speech and language therapist he is now happily putting 3 and 4 words together - but he just can’t quite get the hang of the head of nursery’s name, Mrs Smith, who Robbie calls 'Sniff' - how mortified we were when she told us!
After discussing with the head teacher, nursery staff and Robbie's lead professional we decided to make a request to get Robbie SEN assessed. After putting in our original parental request and being told he was "probably too young" we persisted and after a good six months of endless meetings, discussions, assessments and reports with physios, psychologists, occupational therapists, consultants etc (and not to mention some advice from Jenny Child!) we were very pleased to find out in December 2009 Robbie had been granted a specific support person for him whilst at nursery. This will be reviewed in the summer with a view to increasing the hours to support him full time in Reception in the Infant School in September.
This now means, with Robbie's physical needs, he will have the support he needs to ensure he progresses at school and has every opportunity available to him.
Our son Ryan who is now fourteen was diagnosed with Achondroplasia in 1996 when he was three months old. After very little help from his birth hospital, we requested a referral to Professor Brook at Great Ormond Street. He was the first to shed a positive light on Ryan’s future and we discussed Growth Hormone and limb lengthening. This is the route we have followed.
Growth Hormone was dealt with at Birmingham Children’s Hospital through Dr Jeremy Kirk and we began to give Ryan injections every night whilst he was asleep from the age of fifteen months. We now believe that this has not affected his final height, but it did enable Ryan to keep up with his peers up until around the age of ten when it stopped working.
Leg lengthening began at the age of five and a half at The Royal Orthopaedic Hospital in Birmingham, as a patient of Mr Chris Bradish, using Ilizarov frames. Lengthening at such a young age is not common practice, and the consensus among surgeons is that children should be at least aged eleven or over to be able to make an informed decision. Medically, any risk is not greater if the child is young. However, from a practical aspect, we were able to lift Ryan during transfers, we coped with bathing and toileting, but the weight of the frames caused Ryan to spend a lot of time confined to a wheelchair, which is obviously very hard. The whole procedure is not easy and Ryan had to deal with bone fractures whilst in his frames. There were several pin site infections partly caused by the hospital deciding that the pins required cleaning daily – a policy that has now been changed. Actual turning of the frames took place four times a day for six weeks and involved the use of a spanner! We do, however, believe that this early surgery has prevented any bowing to Ryan’s legs.
Schooling was easier at this age despite a battle with the LEA – no surprise there then! An agreement was eventually reached for a fifty/ fifty split between the local education authority and Ryan’s primary school. Our week consisted of clinic appointments, daily physiotherapy at home combined with twice a week at a hospital forty miles away, and not forgetting the daily pin site cleaning and Ryan’s brother Luke was only three years old at the time, adding to the pressure.
By the age of ten, Ryan had faced two operations on his legs and another on his arms. It was then that we all decided to take a break in order for Ryan to prepare for secondary school and generally enjoy being “surgery free”.
The transition was very smooth, Ryan settled in really well and the school were very supportive. He obviously wanted to be the same as any other pupil and used his chair in science and the writing blocks very reluctantly! Just before Ryan’s thirteenth birthday, he decided, out of the blue, that he wanted to have further lengthening. Mr Bradish is now based at Great Ormond Street and this is where Ryan’s previous procedure in January 2009 was carried out. This created problems for our family unit over the ten days Ryan was in hospital. It is too far for friends to visit and we had made sure that one of us was either with Ryan at GOS or at home with Luke. Fortunately, we have fantastic families who support us all the way.
The surgery at GOS took close to six hours and this time Mr Bradish used Spatial frames because he was also correcting the outward rotation of Ryan’s left foot. This particular type of frame is a lot lighter and less restrictive. We were optimistic that, as Ryan was older this time, his understanding would be far greater and therefore his mobility on the frames would be vastly improved. However, where surgery is concerned, this is not always a guarantee as we found out to our cost! Part of the frame on Ryan’s femur was placed in his knee as this area had the best bone shaft, but as for mobility, he could not fully bend his right knee. Before Ryan could be discharged, he had to be able to transfer himself from his bed to the wheelchair and although the process was slow at first, as per usual he managed to overcome any obstacles with a smile on his face.
At home, we had not accounted for his lack of mobility. Fortunately, we had already built a downstairs shower room and toilet prior to the operation, but we needed to locate a wheelchair-converted vehicle, as hire costs were £400.00 per week. We converted a room downstairs into Ryan’s bedroom and we virtually purchased every item in the Warwick mobility shop! Ryan’s weekly schedule was very challenging. Weekly visits to GOS for the first five weeks, physiotherapy sessions twice a week again at the Orthopaedic Hospital, daily sessions at home whilst making sure Ryan received around eight hours of home tutoring. The LEA provided five hours and we paid a private tutor for three hours per week. Pin site cleaning was now only once a week, thank goodness, and this was combined with a shower. We would laugh that this was our Friday night marathon session, but we did manage to reduce the time taken from four hours to two. This new regime was very successful for us as Ryan did not have one pin site infection and this is definitely due to new methods of cleaning adopted at GOS, such as using gauze dressings and antiseptic wipes. Lengthening was now also easier. The rods were turned once a day and the surgeon gave us a printed schedule to follow.
Within two months, Ryan was walking with crutches in his frames. We were all thrilled and so proud. He was also managing the stairs again and our routine was well established. However, six months passed by very slowly, but finally on 2nd July 2009, the frames were removed, the tibia had to be in plaster for six weeks and activities such as Ryan’s beloved football were restricted for two to three months to prevent any fractures which could have resulted in a plate being fitted.
Finally, if you are thinking about limb lengthening, your decision should not be taken lightly. It is a huge commitment for all of your family – normal life is on hold during the procedure. As parents, we do not regret any decisions, as we believe that Ryan has benefited so much and has gained approximately seven inches on his legs. These operations are hard at any age, but the fact that Ryan decided he wanted to go through it all again is proof that he is pleased with the outcome.
Ryan continues to amaze us with his bravery and his fantastic attitude to everything that he has had to face. He is a positive and confident teenager.
We are very lucky to have two wonderful boys.
I had already given birth to a very healthy, happy 8lb 2oz baby boy in February 2006 and was equally excited to be expecting my second child. Being a second pregnancy I was far more relaxed about the whole situation. However, I obviously went to all my hospital appointment's, scan's etc and had paid for a Downs syndrome test at our local private hospital. It came back very low risk so we sent about enjoying what we thought would be a relative easy further seven or so months until our baby arrived in November. How wrong could we be?
I had been for my 20 week scan and was told all was well. I was having my regular check up's with the midwife at our local doctors surgery and all appeared to be well. At about 32 week's I felt a little unwell, rather ‘sicky’, off my food, nothing I could really put my finger on but the midwife told me that I should go and get checked out at the hospital - which I did.
They monitored the baby for well over an hour but baby was happy and appeared healthy. They then measured my bump and said that it was small for the number of weeks I was (I had never been told this before). They sent me for a scan where I was told that all of the baby’s limbs (long bones) were 20% shorter than they should be and this could be due to dwarfism (Achondroplasia). I was on my own at the time and was totally devastated. They said that key features were a larger than normal forehead and large stumpy hands, of which they could see neither, as the baby was lying very low and didn't have much amniotic fluid around it's head, making it virtually impossible to scan.
I ended up going for two weekly scans and up to UCH in London for a special blood test and a more in depth scan with a Professor Chitti. At well over 32 weeks, I was offered a termination, being told that privately they could arrange this, if we didn't want to bring a baby into the world not knowing what would be wrong with it. We were obviously very upset and distressed by the news, but were not prepared to terminate a baby's life and decided we would make the best of what ever the outcome would be. The remainder of my pregnancy was a living hell; I was very open and up front with all my friends and family from the start, as should there have been a problem at birth I wanted everyone to be aware to avoid any difficult situations and uncomfortable silences! My local hospital insisted they induce me a week early (even though I had gone into labour naturally the first time a day early of my due date and went on to have a water birth). As you can imagine, my husband and I were on tenterhooks as were all friends and family. The drugs took hold very quickly and our daughter was born within 2 hours weighing 6lb. She was in fact, little in stature and only on the 2nd centile for her height, but other than that, she looked perfectly normal in every way - no over pronounced forehead or oversized hands. Since birth on 24th November 2007, we have been for regular 6 monthly check ups at our local hospital with a growth specialist and also to Great Ormond Street to see a Professor in Achondroplasia and Hypochondroplasia. My husband is in fact smaller than average and other members of his family are also shorter than average. However, not to the extent of Achondroplasia and Hypochondroplasia. My husband is booked in for a skeletal scan at our next appointment and our daughter will have the same scan once she has turned 5.
They have discussed growth hormone when our daughter is in her teenage years, however she is still just following the 2nd centile for her height, to which they have said she should in this case reach 5ft. This is a subject we will approach nearer the time and involve our daughter in the decision process. Our daughter has also undergone a multitude of blood tests which are inconclusive to any genetic malformation. At the moment she is a very happy, healthy almost 4 year old with no underlying problems. What upsets us more than anything, is that we were offered a termination of what turned out to be a perfectly happy and healthy child. It will be a life long monitoring situation but at least the NHS are keeping up with this and prepared to act should there be a problem later on and we decide to go down the growth hormone route.
the growth hormone | child growth charity | child growth conditions |
Russell Silver Syndrome (RSS) | Premature Sexual Maturity (PSM) | Sotos Syndrome | Turner Syndrome | Intrauterine Growth Retardation (IUGR) Multiple Pituitary Hormone Deficiency (MPHD) | Bone Dysplasia | Growth Hormone Deficiency (GHD) | Small for Gestational Age (SGA)