I don't know why doctors think Turner syndrome and hypo plastic Left heart syndrome is the end of the world. Yes there is work to be done on the heart, but Turners I found out isn't as bad as they make it sound to be. They suggest termination of the pregnancy once the diagnosis is apparent but there are so many women out there with the disorder who didn't even know they had it til later in life. So how can something so unnoticeable be such a bad thing to the point that you must terminate your pregnancy?
My doctor looks at me and sympathises to me as if my baby is already dead, and I HATE it, my baby is thriving inside yes she is on best life support there is but there is hope for both disorders my baby has so why sympathise for someone who don't need it yet? You make me wanna cry cause you make me feel like this is the end, but its only the beginning.
A lot of people don't know what Turner syndrome is, a lot assume its something like down syndrome or something along those lines. But I now know of a girl who has Turner syndrome who is well on her way to becoming a professional Ski boarder, and the lady who is in charge of one of the Turner syndrome sites has turners and is a genetics counselor. I heard of a woman who was in the check out line and the check out person made a comment about her baby saying oh she must have turner syndrome this characteristic is apparent so she will be mentally challenged and all this. Its not like that people! There are different degrees of the disorder yes, but the ones who successfully make it to term are far from disabled! 98% of turner babies terminate themselves in the first trimester and then it drops substantially after that. (They don't have this statistic available). So anyway, its not the end its just the beginning so don't listen to the negative doctors who insist on terminating the pregnancy. Join a Turner syndrome support group online or in your area and find out for yourself. And for those of you who aren't familiar with the disorder get educated about it before you become sympathetic to the parents and say the wrong thing and end up with your foot in your mouth. Ask questions instead of assuming things are the way you think they are. If you didn't read a book about it then you need to keep your mouth shut and get educated.
And for the Hypo plastic left heart syndrome babies there is hope out there also, I know of a 22 year old who still has her original heart so 22 years ago they did the series of surgeries and she is thriving today! So join a support group and find out for yourself, yes its a battle and a long journey but it can be adjusted to be able to keep your baby alive and for them to live a long life. So get educated and don't jump to conclusions that its the end of the world cause its only the beginning!
Sincerely,
Rabeka Jo