“People with Down’s Syndrome are smaller in stature. Girls average a height of 4ft 9in and boys 5 ft 2in. What they lack in size they make up for in awesomeness.”

Beth is small for her age. She is the oldest in her class by a good few months (she had a delayed start to school) but she is much smaller than her peers and over the lockdown it seems many of her classmates shot upwards while Beth’s growth has been slower. Does it matter? In many ways no of course it doesn’t, Beth is happy and her friends and family love every 105cm of her – certainly what she lacks in height doesn’t affect her level of ‘awesomeness’. But slow growth absolutely matters and it is likely that if Beth didn’t have Down’s syndrome she would be considered as ‘failure to thrive’.

We must not unquestioningly accept that people with Down’s syndrome will be short because we know that height is a well known indicator of general health. Of course there are genetic factors involved, parents who are 5”4 are unlikely to produce a six footer. Being naturally short is not necessarily a problem, friends were jealous of my height at rock concerts and I envied their shorter limbs on an aeroplane. But if you are short because your health is impaired by coeliac disease, poor management of certain conditions, congenital heart defects, hypothyroidism or growth hormone deficiency for example then it definitely is a problem. We need to understand much more about all these factors through properly funded Down’s syndrome specific research.

 

A Swedish study found that growth is slower compared to typical children from birth until adolescence but especially between 6 months and three years and during puberty (1). It would seem that people with Down’s syndrome reach their final height at around 15 – 16 years of age and have a reduced growth spurt during puberty compared with their typical peers. Children with growth hormone deficiency tend to grow in proportion but they can look younger than their years, it also affects fat storage with children appearing overweight.

 

Is the disparate screening for sleep apnea within our community further contributing to the growth rates we now call ‘normal for Down’s syndrome?’  What about the way hypothyroidism is treated currently? How about the way glucose is used in the bodies of those with Down’s syndrome? Do we understand the effect of diet and gut health in Down’s syndrome, particularly when many have round after round of antibiotics? An intervention that may have utility but one should not deny might have an impact on growth (2).

 

There are questions that need to be asked and research that needs to happen to answer them. Many doctors are doing their best, but we believe they need more information to craft guidelines. Guidelines that do not rest on the fundamental assumption that people with Down’s syndrome simply can’t reach anything near the height that is expected for their family genetics.

 

The promise of growth hormone treatment may be helpful for children with Down’s syndrome but needs more rigorous investigation. Beth used to horse ride but now can’t do so because they haven’t a pony small enough, there is also a tendency for adults and peers to treat Beth younger than her years. John loves going to the gym but can’t use all the equipment because he is too short. We need more understanding of the factors affecting general health and growth in those with Down’s syndrome. More research into growth hormone treatment for those with Down syndrome would be welcome, particularly as it is a long established treatment option within the typical population. It is not about seeing greater height as desirable in itself but rather helping children reach the height we would expect based on their parents’ height.

 

The time is right to change the narrative and start asking ‘why?’ and what can we do to ensure all conditions underlying growth are actively looked for and treated. To not consider children for any investigation or therapy because of Down’s syndrome alone is discriminatory and as a community we should challenge the assumption that being short is simply an accepted part of the condition.

 

References:

(1) Growth charts for Down’s syndrome from birth to 18 years of age Myrelid Å, Gustafsson J, Ollars B, et al Archives of Disease in Childhood 2002;87:97-103.

(2)Environmental Enteric Dysfunction and Growth Failure/Stunting in Global Child Health Victor Owino et al. Pediatrics. 2016 Dec;138(6):e20160641. doi: 10.1542/peds.2016-0641. Epub 2016 Nov 4.