I know that a few of my readers are people either expecting a baby with RS (or similar structural abnormalities) or have an infant with RS. I have loved hearing from you how our experiences have helped, in some small way, with your own experiences. I have been thinking lately about all of the moments we received potentially bad news and how little information we had. I searched and searched and found so little more than four years ago.
I thought I might share some of the things we were told about what Abby's life would be like. I will also say a couple of words about how starkly different many of these things are compared with our reality.
*She might not make it through a delivery - Obviously not the case.
*If she lived she might spend a long period of time in the NICU - Only 13 days!
*She might need a feeding tube - She only required an NG tube for about 7 days until she coordinated her suck, swallow, breath reflex.
*She would never be able to walk - HA! I can top that... the kid runs, skips, jumps, climbs, rides a bike and dances like a wild woman. It might look a little mechanical and she may fall a lot but the girls CAN WALK.
*She would never be able to talk - Double HA! The kids has NEVER met a thought she didn't share. She talked early and has never stopped.
*She would likely have mental retardation - At three years and nine months she is beginning to read, spells her name (as well as mine, Grace's, Brian's and her grandparents), counts to thirty, does basic addition and subtraction and tests off the charts for vocabulary. SHe is being tested next year to see just how high her IQ is. They are predicting she is well in the superior range.
*She would not be able to coordinate the two sides of her body - Because of her corpus callosum involvement she is actually able to use the two sides of her body independently AT THE SAME TIME. It is amazing to watch her do something with one side of her body and something else with the other. SO COOL!
*She would be unusually small - She is very tiny for her age. At almost four she is still only around 28 pounds. That being said she doesn't not look unusually small... just petite.
*She will have unusual facial features - Look at the picture of her at the top of the page and you tell me she looks "unusual". She may have a few of the features (like the sharp teeth, some bald patches, broad forehead, weird shaped toes and a large rib cage) but she looks normal.
*She will have unusual behaviors - She does flap and head roll. She also spins when she gets stressed, tired or excited. BUT... it isn't a big deal. If someone told me that my child would flap their arms it would have upset me terribly when I was pregnant. Now is it such a lot of nothing. I don't even notice it.
*She will be hyperactive - She is but so many kids are in modern day. There is so much you can control with diet and medication. This is a road we have only just started down but I know it is something we can handle.
*She might have psychological issues - We are now dealing with her obsessions, anxiety and panic attacks. In time it will likely require medication but medicine can do so much to help with these issues.
So hopefully you see how wrong they can be. So much of what the doctors think they know is either completely wrong or just a worst case scenario. It must all be taken with a grain of salt. Each child is so different and the brain is so plastic. The sky is truly the limit... it is just your job as a parent to push them as high as you can.