North East Lincolnshire Down's Syndrome Family Support Group

Supporting children and adults with Down's syndrome and their families in North East Lincolnshire. Charity number 1154260

Our stories

Some of our members have shared their inner most thoughts and feelings upon discovering their child had Down's syndrome.  If you would like to share your own story then please contact us - thank you.

A pre-birth diagnosis

"As soon as I found out I was pregnant I knew there was something wrong.  I even asked my Mother-in-Law, who was so excited about having her first Grandchild, not to say anything I was so concerned.

The 12 week scan showed no problems.  The following week we chose to pay for a more thorough scan at Leeds, which indicated that there was a 1 in 7 chance of our baby having Down’s syndrome.  Of course 6 babies would have been fine but I knew mine was the 1.  There followed a week of total devastation where we tried to find out everything possible about Down’s syndrome.  A week later I had a CVS test, which involved removing small pieces of placenta.  The following day we received the phone call to say yes our baby was the 1 in 7.  The confirmation was still a shock but also quite a relief as we were now able to carry on with our life.  We arranged to meet local families who also had children with Down’s syndrome.  This was, and still is, an immense help and support, as were the staff at the local Child Development Centre.

As we knew our child had Down’s syndrome we were able to have further scans throughout the pregnancy to check the baby’s heart and other vital organs.  Finally at 20 weeks everything was ok, the scans were fine and we chose to know the sex of the baby and named her.  We found this was really helpful as everyone focused on the baby girl rather than the baby with Down’s syndrome.

At last our daughter was born and after 6 weeks in the special care baby unit she came home and we have never looked back.  She never ceases to amaze us with her ability to overcome adversity and is a delightful daughter of whom we are very proud."

A mother's story

"Having had a triple test result come back as high risk, and then after a dating scan being told I was low risk (1.1200) I had a mixture of emotions during the early part of my pregnancy.

The rest of the pregnancy went smoothly until I gave birth to my little boy.  Within minutes of him being born I suspected that he had Down’s, which was later confirmed by a blood test.

To say that I was stunned/shocked was an understatement – I was devastated and cried every day and night for weeks afterwards. I had lots of emotions/feelings going threw my mind.

During those first few months, I struggled to bond with this little boy, as all I could see was this baby with Down’s not my little baby boy, who I looked forward to joining our family.

As the days went I started looking for information and started meeting families in the same situation as me. This helped me, as it made me think that I was not alone in this journey and that I would be able to cope.  I began to realise that this little boy needed his mummy and daddy to be there for him just as much as his sister did.

My little boy is now 2 ½, and yes he does have Down’s syndrome, but that is not who he is – it’s just a small part of him.

Having Down’s syndrome isn’t the end of the world."

Grandparents story

"We are the grandparents of a child who has Down's syndrome.  Early in 2001 we had the exciting news that our son and his wife were expecting a baby, a first grandchild for us.  After a few weeks the news came that the baby had Down's syndrome and could have other health problems.  We were shocked and saddened for the baby, the parents and also for us but immediately made up our minds to support the parents in whatever decisions that they would make.

The next months were full of highs and lows as we all adjusted to the news.  When we were shown scans of the baby and she was named, we immediately began to love her and felt we already knew this child so it was a wonderful day when she arrived, early but safely.

She was frail and needed special care but after several worrying weeks she came home from the hospital.  Since then she has thrived with the help of her loving parents and many others and is steadily achieving her goals which she takes pride in as we do.  She knows that we are proud of her and she is a delight to us.

Our life would be much less happy without this vivacious, delightful, smiling little girl who is determined to learn and is a character and personality in her own right.  She is loved by our friends and family who have been very supportive.

Being grandparents of a child with Down’s syndrome is in some ways very different from being grandparents of a child without this syndrome but in many other ways is probably just as fulfilling.  The modern approach by many people is so different to our experiences of years gone by and we have realised that children with Down’s syndrome, like other children respond to their environment and can really surprise us with their achievement.

We are looking forward, with interest, to the future and shall enjoy being part of it."