When I first started blogging I really had no idea of the size of audience it may reach. I was nervous about spilling my heart out at first but I always set out with the intention that if it can help just one person feel more positive and/or less alone then it will be worthwhile. The motivation for me was born out of our early experiences at diagnosis and also my anxieties and ignorance about Down's syndrome. I didn't want parents facing the same fears and thinking it was going to be doom and gloom ahead – and so 'The Future's Rosie' was born.
After our BARTS blood test came back with a one in 12 'high risk' of Trisomy 21 we received very little in the way of support from our original consultant and midwife team. They assumed we would terminate the pregnancy if the amniothentesis we decided to have came back confirming Down’s syndrome (DS). Something that really gets my goat is how results are often referred to as high or low ‘RISK’. By using the word ‘risk’ it automatically brings in an element of fear with it’s negativity. A simple change of wording to high or low ‘CHANCE’ could have a profound effect on how someone hears and digests the initial news.
The biggest and hardest decision my wife and I faced wasn't whether we would terminate the pregnancy if the amnio confirmed DS but whether we should have the amnio at all. We had been informed that it carries a 'risk' (correct use here) of miscarriage. Many people may think "well if you were so sure you wanted to carry on regardless then why would you potentially risk the pregnancy?" I can understand that viewpoint but we are all individuals and it was important to us at the time (especially in light of our ignorance about DS) that we knew for sure in order to allow ourselves time to prepare.
Once the amnio confirmed Down's syndrome I remember sifting through the outdated and somewhat clinical information available online and craving to know what it was actually going to be like living the day to day raising a child with a learning disability. I desperately searched for an open and honest opinion from a parent’s perspective. I wanted to know whether my baby would have a decent quality of life and what they might achieve, rather than a list of things they won’t be able to do.
Shortly after the diagnosis my wife and I contacted our local support group where we were soon offered contact with parents willing to offer words of support. This is an invaluable thing for many but equally not something everyone is comfortable with. Personally I didn’t feel ready to meet complete strangers, yet I was desperate to know what they had to say and this is exactly where blogging comes into it’s own – it offers people the chance to read a parents perspective at anytime, whenever they are ready and in an environment they are comfortable with.
I think established and trusted parent blogs could be used by healthcare professionals (HCP’s) in conjunction with current information resources to show, not only the HCP’s themselves, but also new parents what it’s like living the day-to-day. This would help parents deal with the news of a diagnosis and help them see past the initial fear and look towards a brighter future. In the cases of a pre-natal diagnosis having this information from a parents perspective could also help couples make a more informed choice about whether or not they feel prepared to continue with the pregnancy.
There are more parents speaking out now about how a diagnosis is delivered and as a result I’m hearing of increasing numbers of stories where maternity departments are welcoming the idea of discussing ways to improve on this.
After our fairly negative early experience it’s important to mention that since then our other encounters with HCPs have been extremely positive.
Having a child with DS and connected health issues has meant that more interventions from an early age were required than with our two sons. Rosie currently has home and nursery visits from a Physiotherapist, Speech & Language Therapist (SALT) and an Occupational Therapist. All of the aforementioned have helped Rosie immensely and this kind of service has been invaluable to her development – without which we would be feeling somewhat lost.
Here are a few UK based parent blogs connected to Down’s syndrome that I would strongly recommend: