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   /  Lily


On May 2015 my husband James, who was 32 and I who was 28, were absolutely over joyed to discover we had conceived on our honeymoon. At our 12 weeks scan we saw our beautiful baby for the first time and it was all I ever imagined it to be; until the sonographer ended the scan and informed us that due to my blood test results combined with the measurements of the babies neck we had a 1 in 99 “risk” of our baby having down syndrome. We were taken to a small room to talk with a midwife who told us about invasive tests offered by the NHS which would give us a more definite answer. She also informed us of a very quick and simple non invasive test called a Serenity Test, which involved another scan and blood sample. We weren’t too worried as we didn’t see 1 in 99 as bad odds but decided we wanted to know to take away the worry, and could also find out the sex of the baby, so arranged for the Serenity Test.


A few days later, I was driving home from work and received a call from the doctor from the clinic who advised, “We have your results. I’m afraid it has detected a positive result for Trisomy 21″. I started to cry and asked what the sex of the baby was and the woman told me I was having a girl. I thanked her, put the phone down, rubbed my tummy and cried. When I got home I crumbled into James’s arms and sobbed. Once I calmed down I shared the news with my parents and best friends. I received messages back within seconds, all of them echoing the same positive response – “yes a baby girl” “I knew it was a girl ” “a little princess, our babies will be best friends”. Not one of my friends mentioned the fact she had Down syndrome, they saw her for what she was, a baby girl growing inside me who would have a lot of friends in their children.

That evening I Googled, YouTubed and Facebooked everything I could find about Down syndrome. I didn’t sleep more than an hour; I cried, I smiled and when I had no tears left I just sat and stared at nothing. I thought to myself, should I terminate? I put my hand on my tummy – no I don’t want to. I called the hospital the following day and the woman on the phone said, “come in on Monday for an appointment and we can arrange a termination”. I suddenly put my hand on my tummy. “No, I’m not having a termination.” She sounded shocked and told me to still go in on Monday to see them. I spent the weekend using the internet to find out as much as I could.  I even Google imaged ‘babies with down syndrome’ as I wasn’t aware of ever meeting a child with DS.

James was honest and said he was 50-50 with his feelings as to what we should do. I sat and thought about it – my baby was perfect, loved and so wanted from the moment I got the positive pregnancy test. She hasn’t changed, she’s still the same perfect, loved and wanted baby who hasn’t done anything wrong. I was just having a different child to the one I thought I would be having……or was I? What did I now think I was having? I thought I was going to have a baby and I still was. My mind was made up.

I was offered terminations by medical professionals on many occasions, each time I refused and each time the doctors seemed shocked.  I continued to do my own research and had found out that around 48% of children with down syndrome have some sort of heart issues, many of which will correct themselves and not require surgery.

At our 20 weeks scan the consultant referred us to St George’s hospital for a foetal cardiac scan. The following day we had the 2 hours scan and were told our baby girl had a complete AVSD and a narrowing of the aorta. I was advised she would need to be taken straight from birth to the Royal Brompton Hospital, for open heart surgery as soon as 24 hours after birth. She would also require further surgery at around 6 months old to correct her AVSD.

The Royal Brompton Hospital was fantastic, we were invited to meet the staff and to look around the intensive care unit so we knew what it would be like, and were shown the accommodation which would be available for our use whist she was there.

I had 28 ultrasound scans throughout my pregnancy and every time we saw our baby we loved her more and more.

At 37 weeks pregnant a scan showed that our baby had stopped growing.   The Consultant confirmed that we were aware of our baby’s heart conditions and that she has Down syndrome. She went on to ask, “do you want us to do all we can for your baby when it’s born? You can choose to end this pregnancy.” I was astounded, did she really just say that to me?! In shock, I simply replied “yes, do all you can for my baby, I can’t wait to meet her!”

I had 2 failed inductions but finally at 37 weeks and 5 days pregnant on January 2nd 2016, at 6:14pm weighing 5lb 10oz arriving via c section, all of my dreams came true when I had my beautiful, perfect baby girl Lily Susan Sparrow.

Once she had been checked over, Lily was taken to the Royal Brompton Hospital with James and I followed the next day as couldn’t travel so soon after major surgery.  We knew in advance this would happen so I was mentally prepared.

When I saw our tiny, perfect baby girl my heart melted, and I felt nothing but pure love and an overwhelming need to protect her.  It was decided the narrowing of her aorta wasn’t as bad as anticipated and didn’t require surgery. After 3 weeks we took our baby home, it was perfect.  Three weeks later we returned as Lily had caught a horrid cold and it was decided to keep her in. Lily was in heart failure. We spent a further 5 months in the Royal Brompton, Lily had two open heart surgeries which were a success.  It was undoubtedly the hardest time of my life. I cried every day for the first week and then something inside clicked – I stopped crying and instead spent every moment singing, reading and talking to Lily.  She was in intensive care for 4 months.  The staff were just incredible. Lily showed us all every day how strong and determined she was. On July 24th 2016 we brought her home. We had spent 6 and half months in hospital since Lily had been born. It was hard and it wasn’t what we had expected as Lily’s heart condition normally involves a two week hospital stay with one heart surgery and a quick recovery.  We knew then that our daughter didn’t like to be the same as everyone else and didn’t want to be the “norm”.

Lily has been home for over a year now and the love everyone has for her is amazing. Her first birthday party involved 150 adults and 70 children!

Lily is a funny, cheeky, strong minded child. She has her dad’s bright blue eyes and my temper! Ooops! Lily has a tiny extra chromosome, it doesn’t define her, it doesn’t mean she isn’t a “normal” baby, it doesn’t stop her doing what she wants. Lily is my perfect daughter who has Down syndrome; she isn’t Down syndrome, she is Lily.

It isn’t the road I thought life would take me down, it’s been full of a lot of bumps along the way but what road in life doesn’t have the odd bump or pot hole? You just get over the bump and enjoy the smooth road ahead……who am I kidding…. I have a 20 months old daughter, it’s never going to be a smooth road!

The last 20 months have been the hardest, most challenging time of our lives.  They have also been the best, most rewarding, loving, funny, busy, amazing time of our lives. We go to play groups, soft play, down syndrome support groups, sing and sign groups, a lot of parties and so much more. We now have heart reviews every 9 months, physiotherapy and speech and language sessions once a month. Our lives are full of fun, love and laughter all because of our beautiful daughter Lily Sparrow.