After a textbook pregnancy, and a labour which followed my birth plan pretty perfectly, Sophie made her grand entrance into the world. But she didn’t cry, and she was struggling to breathe, so they asked to take her away and give her some help on the resuscitation trolley outside. When they brought her back in a few moments later, breathing well and all wrapped up, they gave her to her Dad and told us she was fine, she had just needed a little help, and the paediatrician would be in to talk to us soon. As Sophie was our first baby, and she had needed a little helping start, I thought this was normal, but her Dad looked at her, and looked at me and said “I think she has Down’s”. I told him not to be stupid, I was 31, our “risk” (what an awful term) had been 1:4000+, but minutes later the paediatrician arrived and confirmed that they suspected Sophie had Trisomy 21. We were extremely lucky in that he seemed well informed on the subject. He told us that some children with Down syndrome may sit, stand and walk, along with their typical peers, that some children attend mainstream school and others attend schools for children with special needs, and that some can live independently and others may not leave home. He was congratulatory and urged us to get to know Sophie, and everything she was.
We didn’t know anyone with Down syndrome, or even anyone who knew anyone who knew anyone! And all of our visions of Sophie’s future were based on outdated stereotypes. In hospital we were given a booklet from our local Down syndrome support group, which told us all about these amazing children in our area, who also had an extra chromosome. These children were riding horses, playing in the park, on holiday with their families, playing with their siblings….our hearts filled with hope, and reassurance that our daughter would do anything she wanted, and our future would be just as we had imagined.
Sophie’s first year has been much like any other baby; she’s guzzled her fair share of milk, been to all the baby classes (and coffee shops!) with our NCT friends, devoured purees and moved on to roast dinners, learned to bum shuffle, developed a crazy love of musical instruments and dancing, shouted “Dada” until she was blue in the face (and eventually learned “Mama” too!), taken her first steps, and, most importantly, melted the hearts of everyone she has met….I never realised a food shop could take 3 hours having been stopped down every aisle by someone who wanted to interact with Sophie!
We have our fair share of appointments, both at the hospital and at home, but luckily I’m good with a diary and I love a schedule! At the hospital we like to visit the midwives who spent time with our family at the start of our journey. They love seeing how Sophie is developing and she loves the attention! I suck up the knowledge and techniques of the education and physical professionals and try and make her “homework” fun for her.
Sophie is, without doubt, the determined, lovable, beautiful little girl we always wanted. She is the character she always was in the womb and was always meant to be. She’s funny, hardworking, and downright troublesome, and we wouldn’t have it any other way. Whether it’s the extra chromosome that makes her so amazing, or something else, I wouldn’t change any of it for the world.
My advice to any parent who is having, or has had, a baby with Down syndrome, would be:
Try and find your nearest support group, even if you’re not ready to go along and meet them yet, they’re a great source of information, and will answer any question, even the ones you think might be silly. They wont judge you.
Get to know your baby. Find out what they love and what they hate. What makes them smile and what makes you smile about them.
Take all of the information you can get and use it to fit you and your child. From your paediatrician and professionals, other parents and support groups, and website and forums. There are things you can put into practice to benefit your child without any extra work
But remember, overall, that intuition prevails, and always do what you feel is best for your child.