Parent Help

Sharing experiences is often a great way to help 'new parents' of a child with Down's syndrome. Below some of our members have shared their experience/story. If you would like to share your story to help others, please email louise@21andco.org.uk


Leia's Story

Back in April 2013, I found out that I was pregnant with our second child. I knew early on, we had been trying for a while and had not been having much luck at expanding our family from three to four. In early June, we went for that all important first scan at the hospital and without giving it a second thought, signed the relevant paperwork and settled down to watch our baby in-situ. It took a while for our nurse to get the things she needed and at the time we did not give it a second thought. We got some lovely printed out pictures and off we went, happy all seemed well.... The following day, a Friday, I missed a call on my mobile. I was driving to our new home - we had just got the keys, so in all the excitement, I never checked my messages. I picked the message up on my mobile later that evening. It was the hospital. The scans had given them cause for concern, they wished to speak to me - could I call them back before 5pm. It was 7pm. On a Friday. According to the recorded message, no-one would be in until Monday now.... It was a long weekend but we had things to do. Monday morning I called the hospital from work. Something about measurements, nuchal fluid readings being off the scale, further tests....possibly chromosomal abnormalities. The voice at the other end was very professional, matter of fact but with a hint of kindness."Are you OK?" she asked. "I don't know..." I answered truthfully and then asked her what the next options are. She asked me to hold on, I heard her get up, close the office door and return to the receiver. She then went on to give me the name of the private clinic which could help me get the answers I wanted more quickly and honestly, and truthful told me that the NHS would take longer and may not be supportive. I will always be grateful to her for that...and, although I did not know it then, so much more that was to come in the months ahead.

The next few days were busy; family rallied round, went on fact finding missions, offered words of support and comfort - but all the time, Sam and I were fairly certain - our baby did have Down's syndrome, and that was OK. And within 10 days we knew. Results came back. Again, I was at work - the same voice on the end of the telephone. I asked for the news straight. "Well, Georgie, I can confirm that your baby girl does indeed have Down's syndrome. They have also noted an abnormality with her heart, so at your consultant's request, he will see you every month and as often as he sees fit......" And there our journey really began. As I put the telephone down, trying to read through the notes I had been scribbling down on a notepad, one thought went through my mind: A girl. I was having a baby girl..... What on earth was I going to do with all the boys clothes we had stored away? I called my husband, broke the news to him that we had been waiting for, then walked into my boss's office and told him I was going home. We did shed a few tears, but they were almost of relief at knowing, being able to get ready, start getting prepared and doing everything in our power ensuring she had the best start. Within days we had named her - Leia. A Princess full of attitude and able to take on the Empire. It also gave her brother Luke a sister he could call by name, and we used her name whenever we could. Our journey has been a roller-coaster, a massive learning curve, it has bought an amazing array of people into our lives. As someone once said - this was never the journey we had planned, but I sure as hell love my tour guide...