When we first found out I was pregnant, Dan & I were really excited and  everything seemed to be going well until, at the twenty week anomaly scan, the sonographer noticed that the baby wasn’t growing as well as she should have been (not that we knew it was a '‘she'’ then but it seems wrong to write ‘it’ about Emily!)  Her growth within the womb was being restricted – but the sonographers didn’t know why. We had an amniocentesis, serial growth scans and blood flow measurements, however they did not show up any problems.  Down’s syndrome was ruled out, as were a number of other more severe conditions.  Eventually, at 34 weeks the baby’s growth flattened out completely so it was deicded that she should be delivered early. Emily was born by elective c-section at 34.5 weeks weighing 3Ibs 3 oz. 

Emily was born with severe IUGR (Intraunterine Growth Retardation) and SGA – Small for her Gestational Age, meaning that she was smaller than other babies would be expected to be at 34.5 weeks, especially given that both Dan and I are fairly tall and had ourselves been good-sized babies.  Due to a combination of characteristics and after failing to display any catch-up growth after 6 months of age, Emily was eventually diagnosed as having Russell Silver syndrome.

Since her birth, Emily has suffered from poor appetite – a common occurrence in RSS children.  We have worked closely with a dietician to try and get as many high calorie foods into Emily as possible, including hi-calorie milk and supplements.  At the age of 2 Emily was still drinking 6 bottles of high calorie milk every day to try and encourage her to put on weight. Although she tries a good variety of solids, it is often in such small quantities and meals often go untouched. Although it is important to ensure that Emily takes in as many calories as possible to assist optimal growth, we do have some concerns about what such high calorie foods could do to Emily’s weight and metabolism in the future.

 As well as struggling with weight and poor appetite, Emily did not develop as quickly physically as other children her age.  Emily could not sit unaided until 10 months and never crawled as she didn’t have the muscles for it. She was late to bear weight on her legs and she didn’t start walking until over 18 months of age. Now, aged nearly 4, she cannot jump properly (much to her annoyance!) or run fast and is often tired from normal levels of activity.

Other people’s perceptions of Emily can sometimes be a bit difficult. Because she is small, children often want to baby her and pick her up like a doll, and adults often comment on what an advanced child Emily must be to be able to talk at such a young age.  We have to explain that actually Emily is older than she looks and that it is important that she is treated appropriately for her age.  In addition, it can be  difficult to find age appropriate clothes for Emily as she only fits into clothes designed for much younger children and her feet are much smaller than most toddlers. H&M and Gap kids have been a godsend with their adjustable waists on trousers and skirts

We do have some concerns for the future – mainly the decision as to whether to use growth hormone or not. If she continues to grow at the rate she currently is, Emily can expect to reach a height of around 4ft 10 inches, which we would be happy with.  However If her growth slows, and it might be that Emily may reach a height of less than 4 foot 6”  without intervention, then we would consider growth hormone therapy as a solution. However, for now, at nearly 4 years of age, weighing just over 25lbs and measuring 91cm tall, Emily is a happy little girl who is doing very well. She attends mainstream preschool and mixes well with other children and is quick to retort if anyone should call her a baby! Her speech is coming along brilliantly and she loves new experiences and activities. Her eating is still pretty poor, but it has become a lot better now that she can talk and we can discuss the reasons for eating with her.