You have been told there is a statistical likelihood of Down's Syndrome. What next?
Potential related conditions & Real Life stories
There are a range of potential related conditions connected with Down’s Syndrome that an individual may develop. Many people with Down’s Syndrome will experience very few health problems; others will need more specialist support. It is worth noting that in the majority of cases these related conditions can be treated or managed. Many people do not realise that the life expectancy for individuals with Down’s Syndrome is actually 60+, and many people will go on to live and work independently.
As a registered disabled person, any individual with Down’s Syndrome is entitled to an 'annual health check' at their local GP surgery. This helps their doctor to monitor their well-being and to ensure that the individual has the support he or she needs to live a happy and healthy life.
individuals with Down’s Syndrome may have a hearing or visual impairment, some of these are temporary, others permanent. Most can be helped with hearing aids or glasses.
Hypotonia means low muscle tone. This can mean the muscles in the mouth and tongue are weaker, it affects all muscles to different degrees and can affect speech, strength and development. There are many therapies available to help individuals improve muscle tone.
Around 50% of children born with Down's Syndrome will experience a related heart condition. The majority of congenital heart conditions can be managed with regular check ups and treatment. In some circumstances, surgery may be necessary; in those cases 99% are successful.
It is possible for individuals with Down’s Syndrome to have a dual diagnosis of Down’s Syndrome and another diagnosis e.g. ADHD or autism.
Weaker Immune System
Individuals with Down’s Syndrome will have a weaker immune system. Therefore, the NHS offers individuals extra vaccinations such as an annual flu jab to help protect them from catching infections.
Individuals with Down’s Syndrome may suffer from some related digestion difficulties: most commonly, constipation, diarrhea or indigestion, which are easily managed. In some circumstances, individuals may be diagnosed with Coeliac Disease (intolerance to wheat), Reflux (the bringing up of milk after feeding) or Hirschsprung's Disease (bowel condition). In these circumstances, increased medical support or a controlled diet may be necessary.
Individuals with Down's Syndrome have a decreased risk of many cancers. However people with Down's Syndrome have an increased risk of developing leukemia. Nevertheless, children with Down's Syndrome have substantially higher survival rates and lower relapse rates than other children with the disease.
"The day our daughter was born we had many questions about what this would mean for her and our lives. Now she is 23 years old, we know there have been struggles but the good times have been far greater. She makes us laugh everyday and often exceeds our expectations. Every parent experiences a multitude of emotions with their child and our daughter is no different to the experiences we have had with her siblings. She has an extensive variety of friends who visit our home making it a lively place."
Jenny and Tim Copp, Surrey
"My daughter Katie was born in 1997. We were, at the time, living in the Middle East, with no services, no internet and no idea what Down's syndrome actually was. And so, we were devastated. I cried solidly for three days, mourning, I think, the 'typically developing' child I had expected. But slowly it dawned on me that life hadn't ended, and that she was just a baby, and I needed to learn how to care for her. After I had, unsuccessfully, tried to find out if she would ever learn to drive a car, the pediatrician drew my attention back to more immediate issues. Katie was then checked over for some of the medical differences that are more common when a child has Down 's syndrome. She seemed to be ok, once she got over the jaundice, but we were referred back for a heart checkup when she was six weeks old. (This is now done much earlier, and can also be looked at on scans while you are still pregnant).
We were told that she would need surgery, and that she had a mild heart defect and surgery could be done any time in the next year. So, we visited Great Ormond Street when she was 4 months old. There we were told that she actually had a major heart defect, (complete atrioventricular septal defect) and needed operating on in the next six weeks or it would be too late. Thank goodness for the NHS!
So, at five months old, I entrusted my little baby to the doctors and nurses and she was wheeled into an operating theatre, without me by her side. That was the hardest thing I have ever done, and certainly made the Down's syndrome pale into insignificance, all I wanted at that moment was for her to live.
Fortunately, the open-heart surgery went well, the holes were successfully repaired and a second valve was made out of the single one she had - aren't surgeons clever!? It wasn't all plain sailing and at 2 years old and again at 8 years old she needed more surgery. Each time it meant a week in hospital before she was back out running around playing with her siblings. Longer term, apart from a scar as a sign of her bravery, she has no lasting effects. She has remained under annual checkups, but in between has horse ridden, trampolined, learnt Irish dancing and participated in Sports Day.
Now she is 21, she dances, sings, is actually studying Performing Arts, goes to the gym and has a very active social life! She has even had a few driving lessons! So yes, having a heart defect on top of having a chromosomal difference was hard, but it did put things into perspective. She was my little girl, and that was really all that did, and still does, matter."
Colette Lloyd, Oxford
"Joe has a visual impairment. He wears glasses to help him see more clearly; they help him with reading and computer work. Joe wears his glasses when he is doing food preparation in the kitchen at the hotel where he works.
Joe's glasses also keep him looking cool and up to date with the latest fashion trends."
Joe Wareham, Poole