As the mother of a full Trisomy 18 girl who is almost 9 years old...thank you. I could speak for days on the horrible experiences we had both prenatally and soon after she was born based on provider bias and limited availability of information. Thank you for specifically saying that it is important to continue the conversations with parents as their minds may change. It is incredibly difficult to make decisions while experiencing the host of emotions that comes along with this journey- as well as trying to absorb medical information as a layperson. Each journey is different and there is definitely no 'one size fits all' answer. Thank you so much for recognizing that and for incorporating this thinking into your work. There are times that living this life seems difficult beyond measure, and living with the knowledge that someday I will have to say a premature goodbye to my sweet girl has broken me more than once. Still, I love this kid with my whole heart and soul. I see regularly the impact she has had on our family and on her world, and I wouldn't change a thing about our past choices. Im just grateful we were given the opportunity to make the choices that were right for us at that time❤
As the mother of a full Trisomy 18 girl who is almost 9 years old...thank you. I could speak for days on the horrible experiences we had both prenatally and soon after she was born based on provider bias and limited availability of information. Thank you for specifically saying that it is important to continue the conversations with parents as their minds may change. It is incredibly difficult to make decisions while experiencing the host of emotions that comes along with this journey- as well as trying to absorb medical information as a layperson. Each journey is different and there is definitely no 'one size fits all' answer. Thank you so much for recognizing that and for incorporating this thinking into your work. There are times that living this life seems difficult beyond measure, and living with the knowledge that someday I will have to say a premature goodbye to my sweet girl has broken me more than once. Still, I love this kid with my whole heart and soul.
I see regularly the impact she has had on our family and on her world, and I wouldn't change a thing about our past choices. Im just grateful we were given the opportunity to make the choices that were right for us at that time❤