When I first looked to Facebook to see what support groups were available I came across ‘Bristol Down Syndrome’. It’s not hugely active but there are some lovely people there and when I introduced myself and asked what information I could helpfully arm myself with whilst I was waiting for Frida to arrive - I received really lovely messages. Other than Nicola’s suggestion that I join the PADS Great Expectations group, the two that I still remember clearly are 1) just enjoy your pregnancy and your baby (which I did and do very wholeheartedly) and 2) start brushing your baby’s teeth at around 6 months even if he/she doesn’t have teeth.

From everything I’ve read on teeth (not a huge amount because unless I really need to know about something I try not to crowd / worry my brain with information!) babies with Down syndrome can reasonably expect to start to teeth a little later and for their teeth to arrive in a sequence all of their own. So for us parents it is anyone’s guess and I am excitedly yet patiently waiting to see where the first will arrive. I think I’ll be a bit disappointed if it is one of the bottom front two teeth!

Like all things where there might be a bit of extra waiting time, I know that her teeth will come eventually so I’m not fussed about when. But when they do arrive I want her to have good dental hygiene and that involves tolerating a toothbrush. We started brushing Ada’s teeth really early so that she never knew any different so that tip really spoke to me and I made a note to make sure we had toothbrushes ready for when Frida turned 6 months.

Since then, we’ve been gently brushing over her gums a few times with a soft bamboo brush every night and she smiles at the sensation, grabs the brush and tries to do it herself.

Babies with Down syndrome are a little more likely to have sensory sensitivities and the mouth and face are places where this could be felt most keenly. So starting brushing early and building up a tolerance to the sensation of touch in her mouth has hopefully made sure we’ve avoided any later rejection of the toothbrush. It is also working on her hand-eye coordination so a double whammy for supporting development.

Long may that continue! So a quick win (a speedy brush once a day) for what I hope to be a lasting benefit of good oral hygiene and a desire and ability to do it herself.

You may have seen constipation crop up on that ‘list’ of possible health conditions that you are presented with when given a diagnosis. You may spiral into a Google-vortex and come out with fears that your child will have Hirschsprung's, will need to have a stoma fitted, or is looking forward to a life on laxatives. Ok, so some of those things are possible. But I wouldn’t let yourself believe that they are likely. And even if your child does have complications with their bowel (as with most health ‘issues’ our kids might have) these things are treatable and generally there are frequent assessments to highlight any issues allowing you to address them quickly. Also, remember they are all things that can happen to a typical child too, but our kids will be more closely monitored for them.

I’d generally want to avoid an over-medicalisation of something, which could result in an unnecessary journey of clinical prodding, poking and intervention. But sometimes that is the only route to giving your child comfort and keeping them well. So always take medical advice if you are unsure about anything.

But what if it could be a simple action that we support our child to take that could help them whilst you wait for a referral, just in case there might be something that isn’t clinical that can resolve whatever the issue is? I’ve recently discovered one of those things and my mind has been blown.

Matilda and Frida were born a day apart. Amy and I met on the Positive About Down Syndrome Great Expectations Group and were pacing our living rooms at the same time for a good few days before our girls made an appearance. We have never met, but have shared messages and experiences over the last 6 months. As I have no experience of either feeding tubes or heart surgery, I asked Amy to prepare a piece to explain their experiences, as she gives great advice to other parents in similar circumstances. Just two weeks post-op, Matilda is thriving and I think it is incredibly helpful for new parents to understand that whilst medical issues can be scary, they can also be dealt with relatively easily.

Matilda was diagnosed at birth with Down Syndrome. Following 12 week screening, we received a high chance result of 1:28 that she would have Down Syndrome so it wasn’t a huge shock. But I was a little worried. Questions ran through my mind; would she ever live independently? Would she be able to communicate with us all? What would her brother and sister think? Never did it cross my mind that she would also have a heart condition.

At her 20 week scan, I asked the sonographer to triple check everything that could be a marker for a baby with Down Syndrome and was reassured everything was within range and 'normal.' So when she went for a routine heart scan at 2 days old I was sure we would be all good and free to go home from the hospital that afternoon. She was feeding well, slept well, and looked just as a newborn baby should- beautiful. Matilda went into the scanning room whilst I waited out in a family room and she was in there what felt like an eternity. Having previously worked in maternity units and having accompanied the cardiologist into scans with patients, I knew something must have been found, as it was taking far too long.