Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Ante natal   /  Charlotte


Hi everyone. This is the story of Charlotte’s journey, she is the joy in our lives. Second to the day she was born, my second happiest moment in life was the 27 July 2011, as that was the day we were told I was pregnant. Colin and I had been trying for a baby for 7 years, and on what we had decided was our last shot at IVF, we hit the jackpot.


At our 13 weeks scan the nuchal fold was measuring high so we were told by our consultant what the possible diagnosis could be, and were and asked if we wanted an amnio to confirm. Although I felt so guilty having the test, I knew that I needed to know to be prepared. You see the type of person I am, I would only have spent the rest of my pregnancy worrying about things and probably doing my baby more harm.

At 17 weeks we had the amnio and I got a phone call the next morning to confirm that our baby had Down syndrome.  Don’t get me wrong, there were hysterical tears for the first ½ hour until my husband got home from work, then there was calm as we were both together again to discuss the news. Nothing changed for us though and we still loved our baby as much as we did before the diagnosis. Albeit we didn’t know anything about DS, but you see we had just returned from a cruise where quite a few of the passengers were adults with DS so we had just had the experience of knowing that things could be OK and life could be “normal” whatever that may be!!!

We then went to see the consultant at the hospital. They gave us our options, discussed termination with no pressure whatsoever, and when we told them it wasn’t an option for us, the consultant at the hospital was great. We got to see a paediatrician right away who basically talked us through the health risks and gave us information booklets from Down’s Syndrome Scotland (DSS). If anything, it was probably a bit of information overload that day.

We were told we would get a detailed scan at 20 weeks to specifically look for any heart or bowel defects. The next couple of weeks were spent holding our breath and waiting for the scan. The day arrived and after what seemed like an eternity we were given the news that everything was fine and we had nothing to worry about. Finally, I could breathe and start getting excited about things again.

The remaining 20 weeks were spent reading, preparing, nesting and getting ready for our new arrival. We had got in touch with DSS and been put in touch with a parent contact and had a visit from the family support worker. All was good. We worried about stuff you read on babies with DS – the potential early labour, possibly not feeding, small weight at birth, but at 39 weeks and 5 days the day arrived for me to be induced. At 1:19 am on 29 March 2013 Miss Charlotte Anne Drummond arrived into our lives weighing 8lb 7oz and breastfed almost immediately, what did we have to worry about, she was doing great!

After staying up all night watching her, texting, phoning and Facebooking everyone we knew, we lived that first day in sheer unadulterated pride and joy. The day after, however, was a completely different story. We got, what we thought, a routine scan and ECG. I sat in blissful joy staring at my girl and thinking how well she was doing as the sonographer did their job. Nothing was said and then about 5 minutes later the paediatrician on duty came in and very bluntly told me that Charlotte was in heart failure. She had two holes, two leaking valves and would probably need surgery within 3 weeks. This was a Friday so he then said I would remain in hospital until Monday and they would then send us to Yorkhill Sick Children’s Hospital. As you can imagine, we were distraught as we had spent the last half of my pregnancy believing our baby had no major health issues and wouldn’t require any surgery.

We spent a very teary weekend in the maternity hospital then went to Yorkhill on the Monday, sick to our stomachs with worry.  Charlotte was given another echo scan and checked over by the consultants. They confirmed that charlotte had an AVSD and complete/partial VSD and would need heart surgery but certainly not in 3 weeks. We were told to take her home.

At 6 weeks Charlotte’s feeding started failing, she just ran out of puff and physically couldn’t suck anymore, so she had to be fitted with an NG tube to assist. Again, another traumatic experience at the time as we had to learn how to manage the tube and the reflux that came along with it. On Friday 8 June 2013 we got a call saying there was a cancellation on the Monday and could we bring Charlotte in that night for all her pre-op checks. I’m not sure how others felt but for me it was obviously the initial panic but also a strange sense of relief that she was finally getting “fixed”.

The morning of the operation was terrible as Charlotte had been fasted, so was obviously upset and hungry and we were just upset at the prospect of what lay ahead of her that day. The surgeon came to speak to us and all I could look at was the size of his hands and think how could he possibly operate on my tiny girl with hands that size? Thankfully Colin was there to talk through all the procedure, the risks, timeframes, possible outcomes and to sign the consent form. I just couldn’t let go of my girl. At 9:30am that morning we got to take her to theatre and the walk there was one of the most awful experiences of our lives.

Much of that day was spent in a daze and sniffing the sleep suit she had slept in the night before. We got a phone call at 3:30 to say she was out of theatre, all had gone well and to make our way to ICU to see her. We got to ICU and spoke to the surgeon. They had completed a full AVSD and left cleft valve repair. He was very happy how things had gone and was really pleased with her progress……and breathe!!!

That first sight of her was terrifying. Our wee tottie lying in that bed with tubes and wires everywhere and no movement from her whatsoever. But she was through it and all the signs were good. She did remarkably well and was moved to HDU on day 2. By day 3 we were back on the ward and I got to stay with her again. She was off her oxygen by day 5 and for the first time we got this huge cheesy smile we had never seen before. It was almost as if she was telling us how good she was and things would be OK now. By day 6 we were discharged.

I am so pleased to say that now we are all back in “normal” family life. We are all back at work, Charlotte attends nursery four days a week, we’ve had our first holiday abroad and about to go on our second.

I could go on writing and telling you how wonderful my girl and this journey we are on is. It’s not the journey we planned, but does anything really work out the way you planned? Charlotte continues to flourish in every way and brings such love, pride, light and joy to our lives every day.