Did you know George had Down Syndrome during your pregnancy?
We did. During the 12 week Scan they noticed his neck being slightly thicker than normal. We tried a blood test to confirm the Down Syndrome (they call it a Harmony test in the UK), but this failed and the results came back as inconclusive on (3) separate occasions. So we ended up having an Amniocentesis which confirmed that he did have Down Syndrome at around 17 weeks
How did you react to the diagnosis?
We were ok about it (well, as ok as you can be under the situation). It was horrible knowing the neck was thicker than usual, and when it was not confirmed (by the Harmony Blood tests) we had many (unanswered) thoughts going through our heads.
From the time we started to find out at the 12 week scan, to the time we had 3 blood tests and an Amniocentesis, it wasn't until 17 weeks that it finally got confirmed. So in that 5 weeks we learned a lot regarding Down Syndrome. Once it was confirmed it was not such of a big blow and we had already had our decision to keep George before we had the results confirmed. We actually found it a relief because we found waiting in limbo was much worse than actually having the confirmation.
What advice would you give to other parents in this situation of knowing before their child is born?
Relax and do not panic (I know much easier said than done). The fact that your child has Down Syndrome is not going to change. If you find out after birth, please remember this is your baby that you will continue to love the same as any other child (if not more).
Get as much medical support as possible and interact with other parents who have children with Down Syndrome. Please do not hide in a corner and think this will go away.
Children with Down Syndrome thrive on interaction with other children, it will help them develop more positively.
If you have found out during your pregnancy, once again relax and do not panic. In the UK 90% of parents who find out during pregnancy will terminate (we are in the minority of the 10% who did not). This 90% figure is similar with other countries.
Remember, you have time before you have to terminate, so before you even make your decision. All we would say is find out as much information as you can get, ask other parents, speak to official Down Syndrome Charities.
We couldn't imagine life without George, it hasn't been easy, but its been incredibly rewarding. Just think long and hard about your decision.