When Sarah-Jane gave birth to Hannah with Down Syndrome, almost eight years ago, it was a shock for her and her husband, Sean, but now looking back it turned out to be less frightening than she first felt it would be.
Following the standard pre-natal testing, they had been told that the chance that Hannah would be born with Down Syndrome was 1 in 210, which was significantly higher than their first child. However, they decided not to have any further tests, as they knew it wouldn’t change any decisions they made about the pregnancy.
“All the doctors and nurses who treated us were very respectful of our decision, and in hindsight I now realise that they still kept a very close eye on both me and Hannah, without telling us she had Down Syndrome.”
When Hannah was born, she clearly had the physical characteristics of a baby with Down Syndrome and was looked after in the Special Care Baby Unit for a week.
A genetic test confirmed that she had Primary Trisomy 21, which is the most common form of Down Syndrome. This means that Hannah has three copies of chromosome 21, rather than the usual two copies. This additional chromosome causes the range of physical, developmental and cognitive characteristics that we associate with Down Syndrome.
“The midwife knew immediately that Hannah had Down Syndrome, but she needed the paediatrician to confirm the diagnosis. That’s when things started to get scary for us, and the process of diagnosis and informing us was very poorly handled.”
“After a few days we met a neonatologist who helped us to understand what would happen next and what we needed to do. She really reassured us and offered the support and guidance we needed in those first few days, and I often think back about what a pivotal role she played in our journey.”
Since then Hannah has had a number of health tests and procedures but she remains healthy and happy and is thriving in her local mainstream school.
Sarah-Jane sought out other families and is now a trustee at the Bromley Down Syndrome Support Group which offers support and friendship to over 70 families in the Bromley area.
Working with the charity has given Hannah’s Mum the opportunity to educate clinicians and support workers and ultimately help to change the narrative around Down Syndrome.
I want all clinicians to consider the language and tone that they use when talking to parents about Down Syndrome. Yes, we all need to know the reality, but I also want to encourage more positivity and support
Sarah-Jane, mum to Hannah
"Our Charity is working with the Local Authority to develop a Down Syndrome Pathway to define a treatment and support pathway for all people with Down Syndrome throughout their entire lifetime.”
- Support is also available from the Down’s Syndrome Association (opens in a new tab) where you can also use an interactive map to find a local support group (opens in a new tab).
