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   /  Lois


At the time I discovered my pregnancy, I had just turned 42 although I felt I was 25 still, I had a 13 year old daughter from a previous marriage, a good well paid job, I was fit, running 25 miles a week and training for the Cardiff half marathon. I was in a relatively new relationship which I had realised was not for me after a weekend away to Cornwall.


It was August, we got back from Cornwall on a Sunday evening and I hadn’t felt right all weekend. I put my case in the kitchen and all of a sudden I knew I was pregnant. To my surprise Tesco Extra sold pregnancy tests, I did it straight away and there were two blue lines. I was anything but happy. I cried, I was not planning on getting pregnant, moreover I was planning to end my relationship.

I didn’t tell many people, I had to get my head around this and be sure it was doable. I wrestled with my emotions, wondering whether I should continue with the pregnancy and then I started bleeding, it was then I knew I wanted my baby. I was scanned early at about 8 weeks and saw the tiniest of heartbeats, I knew I definitely wanted to continue and actually started to look forward to having another baby, it would be like a first baby all over again.

We went for the 12 weeks scan, all looked great. I saw a beautiful tiny human on the screen and felt happy. The appointment a few weeks later was good too, the midwife took my blood, I don’t even remember them telling me why, I just assumed it was all par for the course. I got a phone call a few days later with the results, I remember the midwife saying that there was a chance my baby could have Down’s syndrome, the chance was 1 in 5!

I started crying that day and I’m not sure when I actually stopped, it was like some sort of nightmare. I was certain that I wanted an amniocentesis, I just had to know for sure, so, I was booked in for the procedure the following Tuesday. I arrived at the hospital to be led to a private waiting room, away from all the other ‘normal pregnancy happy mums to be’.  I waited for the consultant for an age, I was finally called in to the room, I felt like I was going to be sick. The procedure was awful, the consultant struggled to get any fluid and had to reinsert the needle 3 times but third time lucky, the vial was full. I was told to rest and I would get the results Friday.

Friday came, I could not sit still, we ended up going out for a coffee to try to kill some time, my phone rang, the midwife asked where I was and could I go somewhere private. I asked her to just tell me, already knowing what she was going to say, she said, “your baby has tested positive for trisomy 21” I was like, what?? What does that mean? She said, “your baby has Down’s syndrome”. I burst in to tears again, I could hardly walk out of the coffee shop, it was like a dream. A really bad dream.

I was terrified, I felt cheated, I felt it was so unfair, what had I done to deserve this? All these questions in my head to which I would never be able to get an answer. I cried and cried, then I cried some more because I had the fear, the fear that most of us have about Down’s syndrome, that is, until we know someone with it. I didn’t know anything about it. I started researching, I would later realise that google was not my friend! The information online is so far from the truth it’s almost comical now, but that was all I had to go on then.

I had an appointment with the consultant a few days later; he was lovely, there was no pressure, just support for whatever decision I was going to make. He gave me very honest factual information about the termination procedure and signposted me to support, he gave me a few weeks to make a decision.

My fear was strong, negativity everywhere, the more I read the more I thought the future was bleak. Then I found a local mum, her daughter who was 5 at the time also had Down’s syndrome. We met, we talked, I cried. Her daughter hugged me, it was the most beautiful hug I’ve ever had. I told my daughter, her reaction stunned me. I tried to stop crying to tell her, I said ” I have to tell you something about the baby”, she said ” oh no, what is it” with the look of fear in her eyes. I said, “the baby has Down’s syndrome,” the relief on her face as I said those words was amazing, she smiled and said “that’s ok mum, I thought you were going to say something terrible”. Those words, out of the mouth of a thirteen year old still give me comfort today.

I had another scan, I asked how the heart looked, at this point in my mind I was still unsure whether I was going to continue with the pregnancy, although all my friends say they knew exactly what I would do. The consultant said the heart looked fine and was there anything else I needed to know. In an instant I said yes, I need to know the sex, I hadn’t planned on finding out but for some reason it felt right, I needed to know, everyone looked at me in horror and checked that I was sure I wanted to know the sex? It’s a girl! That was it, that was the point I knew my girl deserved a chance, she deserved life. Unfortunately, my partner was not so accepting so the relationship ended and I continued alone.

I continued to meet with the local mum, who was also pregnant and also expecting a girl so we had lots in common and soon became friends. She was due 3 weeks before me so it was a very exciting time. I had good days and lots of bad days for the rest of my pregnancy, the fear was strong. One of the main things I worried about was that I might not love her, it’s so hard for me to admit this now but I do remember it being a very strong feeling.

I was induced at 38 weeks due to static growth. My lovely friend, who would become Lois’ godmother was my birthing partner. I went in to strong labour at about 5pm, I went for a walk in the hospital grounds and barely made it back to the ward. Lois decided she didn’t want to stay inside any longer and made a very quick entrance in to the world. I vividly remember Lois being placed on my tummy and being too afraid to look down, I waited and then found the courage to look and said “phew”. Phew because I looked at her and got the biggest rush of love ever. My beautiful girl was finally here. Born at 10.28pm weighing in at 7lb 7ozs with the biggest head of hair, the longest nails which looked like they had been French manicured and eyelashes to die for! All was fine, she needed no help, she was breastfeeding within a few hours and very content. I was overjoyed and so very proud of her.

We came home on day 3, Lois was a dream baby, just so content although slightly nocturnal. Lois breastfed brilliantly and everywhere we went strangers stopped me to coo over her; I remember 3 ladies in M&S wanting to steal her. Lois just went from strength to strength, hitting her milestones with such determination. Nothing compares to the joy and pride you feel when you watch your child work so hard to achieve something.

Lois is the light of everyone’s life, she’s educated me, she’s changed me, I’m a better more patient, less judgemental person, I now realise what’s important in life and I thank her for that. When I was pregnant, whilst I still had the fear, I used to listen to other mums of children with Down’s syndrome say they wouldn’t change their children for anything and I am ashamed to admit I didn’t understand, I didn’t believe them, I thought they would say this because they felt they had to say it but, guess what, I wouldn’t change a single thing about Lois. Down’s syndrome is a part of her and I love every single cell in her body including Down’s syndrome. I don’t see anything but ability when I look at Lois, I don’t see Down’s syndrome at all and I’m always a little taken aback when a stranger makes a comment, I always wonder how they know!

Lois is now a cheeky, funny, clever, determined, mischievous 3 and a half year old, she is a joy and a pain in equal measure as all 3 and a half years olds are. She has just started nursery at a local mainstream school and absolutely loving it, she gets stuck in and nothing holds her back, she has also recently started a dance class.

It turned out that my now friend, local mum, also had her baby on the same day, born in the same delivery suite and delivered by the same midwife, despite our baby’s due dates being three weeks apart. We call our girls the birthday twins! Friends for life.