TODAY   |  September 06, 2013

Parents of miracle baby recall devastating diagnosis

Rep. Jaime Beutler of Washington state and her husband, Daniel, say that their baby is doing very well after being born despite a usually fatal condition, and describe the devastating moment when doctors told them their unborn child could not survive.

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This content comes from Closed Captioning that was broadcast along with this program.

>> well, congresswoman butler and her husband daniel with are us now exclusively. good morning to both of you.

>> good morning.

>> congratulations on this bouncing baby miracle. how is little abigail doing this morning, congresswoman?

>> she is doing wonderful. call me jamie. she is doing amazing. we actually, yesterday, the last couple of days we are holding her. she is playing. she will scream when her diaper is dirty. she is like any obey by. she has a few challenges, but, man, she is determined.

>> i can't imagine how you felt as a first time mother getting this diagnosis from the doctors and when they first talked to you, they didn't give you many options, did they?

>> they gave us no options. and it was probably the worst -- it is the worst moment in your life. i can't describe being told -- i mean, he was looking at us and telling us your baby has no options. it's incompatible with life, it's terminal and at that moment, she was moving. she was moving in me and he's telling me she's not going to live. that was -- that was an amazing reality check. and, you know, at that point we were thinking it's a first time baby. we were going to get our ultrasound. should we find out is it a boy or a girl and then to be told it's not going to live, it was pretty devastating.

>> but daniel, you and your wife would not take no for an answer. you sought out medical help and had this experimental treatment. is that your advice to never give up.

>> most parents don't need the advice never give up but i would say, i guess, there's no guaranteed solutions and there's no magical cures. certainly for bra. but don't be satisfied with just one opinion because there's a lot of intelligent doctors with different perspectives and experiences and opinions so work to find one who will partner with you to make sure that anything possible will be at least tried.

>> yeah, that was something that i've had other parents say, we tried. we advocated. but we couldn't find a willing physician. and the way we found the doctor who worked with us was because another parent had seen the story and slipped us the name and said here's a doctor who might try. we had more doctors tell us no than tell us yes and there's other parents out there that have had similar experiences. we would like this to be part of the conversation when this diagnosis comes again so these parents have an option.

>> you have an incredible story and wonderful little girl . our best to you. thank you for being with us.