I didn’t know anything about Down syndrome and I didn’t think I was strong enough to cope.
Lu was 42 years old and pregnant with her second child through IVF. She knew that her chances of having a child with Down syndrome had increased with age, but she never thought it would happen to her.
“The midwife called me with the results from the combined screening test that they do when you are around 14 weeks pregnant. She told me it was positive, but I didn’t know what that meant.”
The combined test screens babies to assess their chance of having one of three genetic conditions; Down syndrome, Edwards’ syndrome and Patau’s syndrome.
“The midwife told me that the test showed that there was a 1 in 100 chance that my baby would be born with Down syndrome, but then at the 20 week scan, the consultant said he could see no markers of Down syndrome and my baby looked ‘perfectly healthy’. I didn’t ever really consider that Down syndrome could be a reality.”
Lu developed gestational diabetes and so needed further monitoring. At 30 weeks, she was offered another scan which showed she had excess amniotic fluid. At this point they decided to have an amniocentesis which takes a sample of fluid from around the baby to check for genetic conditions. The test showed that Lu’s baby had Down syndrome.
“I was scared. I didn’t know anything about Down syndrome and I didn’t think I was strong enough to cope.”
Two weeks later, Billy was born.
“Before Billy was born, all I had was a leaflet which was full of negative statistics. It was a blessing that he came early so I didn’t have too much time to think.”
Immediately after he was born, Billy was taken for surgery to remove a blockage in his small intestine.
“I didn’t hold Billy until he was 36 hours old. After that he was just my baby and we got on with it.”
Lu decided she wanted to meet other people in a similar situation. She contacted her local Down syndrome group, but they told her that no other other babies were known to them, so she decided to create her own support network.
“The first Mum I met had a little girl aged 4. She was running around having a great time and in that moment I knew we would be ok.”
When Billy was four, Lu set up her own support group for families living with Down syndrome called Get on Downs.
“I didn’t want anyone else to feel bewildered or isolated. I wanted the right information and support to be available for families from the moment they received a diagnosis.”
Billy is now 16 years old and is just finishing mainstream education. Lu has educated healthcare professionals in her local area and provides new baby packs for families. She also works for with Down Syndrome UK and is a trustee for the National Down Syndrome Policy Group.