Parents whose child has/had Trisomy 18?
I've searched the boards and I haven't found anyone who may have a child currently or has had a child who had Trisomy 18.
I had an emergency c-section about 2 weeks ago and my child was tested and has full Trisomy 18. She also has a VSD. She was early, born at 33 weeks 6 days. The doctors have let me know that babies with Trisomy 18 usually don't live past 1-2 months, and usually die in the first year of life. With that said, I am mainly looking for support from other parents who are currently or have dealt with this in their family.
It just seems that the doctors want my husband and I to take our baby home, just to die. I just can't look in her tiny face and accept that, but I cannot fix her and the doctors can't either. So if there are parents out there who have been here emotionally you can contact me with recommendations on how to cope at anytime.
Thanks
Re: Parents whose child has/had Trisomy 18?
I have no experience with Trisomy 18 but I remember this you tube video circulating in the past about a little boy who had it. I don't know if you've seen it or not.
Ok, my friend who had a nephew with T18 said this:
my sister-in-law LOVED the boards on babycenter.com related to fatal diagnosis (i think--i haven't gone over there so i am not sure exactly what the boards are titled) -- she "met" a few friends on there and even found one in san diego near her that she has gotten together with in person.
also, here is a blog post i wrote in which i linked to a few (general) resources that my sister-in-law shared with me.
https://thesutherbaums.blogspot.com/2...ew-nephew.html
Congratulations on your daighter's birth - she must be some kind of fighter. What a strong little girl to have so many obstacles and here she is. There's another woman on the boards CoolTeacher (I think) who has this blog about her son who had a poor prenatal diagnosis. She wrote her son Isaac daily letters and shared them in her blog: https://mydearisaac.blogspot.com/
Isaac's life was important and mattered and made a big impact on the lives of many other people. She now keeps this blog: https://sgirl79.blogspot.com/ and invites people to contact her.
Prayers are with you as you travel this path.