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.

  /  Into Childhood   /  Lowenna


I’m pregnant! Couldn’t believe I was. I was on holiday in France with my family and had sent my husband out to a French pharmacy to buy a pregnancy test to be sure. He later told me how he and my brother in law had asked for test, by imitating a pregnant lady and saying, “Up le duff” a lot!

I got home and went to the midwife in our local village – I knew her as I had had my daughter 3 years previous so she was pleased with my news too. She offered me the usual blood tests and I said yes, I had had them before so may as well with this little one.

I get a phone call – on a Sunday! I missed the call as I was out but became quite alarmed that a midwife would call on a Sunday. I thought this can’t be good. When I finally got to talk to her she gave me the news that the bloods had come back at a high risk of Down’s Syndrome 1:25. She went on to talk to me about amniocenteses. My head was fuzzy and tears started to pour. I spoke to everyone I could get advice off. One of these people was my old best friend from school who I knew worked with adults with disabilities. She told me about their lives and what they love to do every day. She told me about the support I would get and who to talk to next, I felt a little better.

My next appointment was to have the amniocenteses. I felt I needed to know one way or the other. I couldn’t wait for another 7 months. I couldn’t worry about my baby’s heart for another 7 months. The process went well. But the agonising wait for the results seemed a life time! We were going to get the results on the first day of our next holiday (my husband’s a travel agent, we love holidays!).

We touched down from the plane and went straight to the accommodation. I picked up the phone to call to get the results. This was in 2007 and we were the other side of the world from Cornwall. The connection and signal were not great. I got through to the nurse and she said, “Mrs Davies, I’m afraid it isn’t good news” Beeeeepppp we got cut off! Well I was beside myself, my husband was desperately trying to get them back on the phone. We were in contact again. The nurse went on to tell me that my baby will have down’s Syndrome and rolled off in the same sentence, “when would you like to come in for the termination?” This question shocked me. How casually it was said. How automatically it was said. I told them I want to enjoy my holiday and I will see them when I get back. Luckily, I was in paradise with all my family: husband and little one, mum, dad, sister, brother and their partners. This helped me a lot.

The first night of my holiday I was in bed with silent tears rolling, I didn’t know what to feel. I felt guilty I wasn’t happy that I was pregnant. I felt scared. But every time I had one of these feelings I would get a little kick in my tummy, a flutter from my baby. This was her telling me everything will be ok.

My next appointment was with the ‘specialist’ doctor. He told me about all the medical things that can go wrong with my baby. He told me to think long and hard about having a termination. I said that none of this is necessary. I asked him to tell me the sex of my baby. He asked me if I was sure I wanted to know as it is much harder to have a termination when you know the sex of your baby. He wasn’t listening to me – I want to keep my baby.

Over the next 5 months I was monitored closely. 6 weeks before my due date the doctors said that my baby wasn’t growing and that she would be better off ‘out’ rather than ‘in’. I was booked in for a C-section.

The team around me, whilst having my baby, was huge! I think there must have been around 15 people in the room. As soon as she came out she was whisked to one side and checked over. Out of the corner of my eye I saw a Paediatric doctor turn to a nurse, he swiped his forehead across and said “phew”. I knew then that if he was relieved, my baby must be healthy.
The first thing I saw when I held Lowenna, was her hands. I was in love. Her hands were the smallest, cutest hands I had ever seen.

Lowenna is now 9 years old. She has no heart problems, she has lots of colds and chest infections, her hearing is very low but we cope with this through Makaton. She is walking, talking, playing, signing, dancing, singing, loving, demanding and ours.

Lowenna in Cornish means ‘Happy’.