“Today marks World Down Syndrome Day, chosen to represent the 3 copies of the 21st chromosome present in those with Down Syndrome. In order to raise awareness we wear odd socks, to represent how the chromosomes look in a microscope.Our journey with Down syndrome began on 10th June 2021, the screening results from our 12 week scan had revealed that we had a 1 in 82 chance of having a baby with Down Syndrome, a telephone call which no one expects to receive. 90% of people who have a prenatal diagnosis of Down Syndrome terminate their pregnancy, an option that we were given on more than one occasion, but I had had 2 previous miscarriages and this life that had managed to keep thriving felt precious. We had extra appointments and in-depth scans, the most worrying and anxious times in our lives, but, our baby was growing well despite her higher chance of having birth defects, something that gave us strength and courage.
When I went into early labour at 37 weeks it was somewhat of a surprise, and when Sophia finally made her appearance 5 days later via emergency C-section and was whisked away to SCBU after a very brief cuddle,
I was left in shock. It hadn’t entered my mind that she could need help after birth because it was never mentioned. I remember finally being allowed up to SCBU around 12 hours after giving birth, itching for my first proper cuddle, only to get there and have to wait for another hour whilst an echocardiogram was carried out to check her heart function, the longest and most worrying hour of my life. We spent 4 weeks in hospital, Sophia in SCBU, myself in a side room, and my husband coming and going. Sophia needed oxygen and feeding support mostly, amongst a plethora of other tests and checks. Family were unable to visit due to covid restrictions so for a while the nurses became part of our family, caring for, and supporting all 3 of us. After spending Christmas on the unit, we made it home for New Year, and had to learn to navigate life with a new born at home, a very different way of life to being on the unit.
I was left in shock. It hadn’t entered my mind that she could need help after birth because it was never mentioned. I remember finally being allowed up to SCBU around 12 hours after giving birth, itching for my first proper cuddle, only to get there and have to wait for another hour whilst an echocardiogram was carried out to check her heart function, the longest and most worrying hour of my life. We spent 4 weeks in hospital, Sophia in SCBU, myself in a side room, and my husband coming and going. Sophia needed oxygen and feeding support mostly, amongst a plethora of other tests and checks. Family were unable to visit due to covid restrictions so for a while the nurses became part of our family, caring for, and supporting all 3 of us. After spending Christmas on the unit, we made it home for New Year, and had to learn to navigate life with a new born at home, a very different way of life to being on the unit.More than a year later, we still have more appointments than most, but, we also have loads of smiles and laughter, we support her, encourage her, and celebrate her achievements, just like any other family. Down Syndrome brings a more scenic route to our lives. It brings a slower pace, and an appreciation of the little things. Some days are hard, but overwhelmingly, it brings love, joy, determination, and pride. We love Sophia unconditionally, and she wouldn’t be her without her extra chromosome”
