Tuesday, October 7, 2008

What Anencephaly Looks Like

I don't want to leave a sour note first here on Emma's blog, so I thought I would try to show others what anencephaly looks like (via ultrasounds).

This is an ultrasound profile pic of a non-anencephalic baby at 20 weeks. In my opinion, you can clearly see the head and see that it is a profile picture. You can see a little where the eyes, nose, and mouth's locations are.
This is Emma's 20 week profile ultrasound picture. She's got her head a little more tilted up than the baby in the first picture does. The arrow is pointing right to her nose. A little more below her nose (but actually to the left a little in the picture itself) is her mouth (the other whiteish stuff around her mouth I believe is faintly her hand, because she had her hand by her head for a lot of the ultrasound). The dark circle on her face (if looking at the picture, down from the nose and only a tad to the right) is one of her eyes. The other eye is on the other side of her head which is not in this picture. Notice that her head stops just a little above her eyes and continues at a downward slant. It's not the regularly full and round head that you would see.


Kristen said...

I'm sure I'm just biased - but I think she's beautiful!

Jon and Angela said...

Hi Tiffany. I'm Angela. Trine is one of my good friends. I was saddened to hear about your baby girl. I was telling Trine that I have a friend from high school who had a baby with anencephaly 7 years ago. This has made me think of her. I was talking with her the other day and she said she'd be willing to talk about it with you if you wanted to. Her baby boy was born at 6 months gestation and lived for 9 minutes. You can e-mail me at lanier445(at)hotmail(dot)com or I can get my friend's phone number to Trine. You and your family are in my prayers.

Tiffany Moffler said...

Hey, how were you able to deal with this? My husband and I are going through the same thing right now. And it's seriously the hardest thing I've ever had to deal with, and just living my life knowing that I have to wait for a miracle... that can get really discouraging. I just wanna know how you did it... or how you're doing it.

Amanda Lucas-Perkins said...

Hello Ladies. I'm Amanda. My best friend, Elizabeth, Just found out a couple days ago that her baby boy has Anencephaly. This is the longest she has ever been able to carry, and is now completely crushed that this is happening. I have been trying tirelessly to comfort her. she doesnt know what to do and i am 1800 miles away from her. any advice you could offer would be wonderful. thank you all

Jack's mum said...

Hi there. Our baby Jack was diagnosed with anencephaly at 16wks and our world fell apart. He died during delivery a couple months later. That was 25 feb 2007 and in many ways it feels like a couple of months ago. We already had 3 beautiful, healthy boys and I'm ashamed to say I presumed all would be well with Jack too. I turned away from my faith and beliefs as I felt I was being punished. I didn't want to accept that 'it wasn't meant to be'. I wanted to scream at everyone i passed that my baby was going to die. However, time does heal. I now understand that Jack wasn't taken from me...he was given to me; if only for a desperately short time. And our lives are richer for knowing him. I would advise anyone facing this mountain to climb to 'enjoy' every moment. I know it sounds crazy but your journey now will carry you through the difficult times in your future. Celebrate the life within you, talk and sing to your baby (he/she can hear you). Feel the flutterings and movements and if you still have morning sickness, enjoy the fact that he/she is letting you know he/she's there. This will never be a time of fun, but you must make your memories more than the terrible hospital experience of being told the terrible news. Because the reality is, memories are all we have left. Jack will always be part of our family and no parent is complete after losing a child, however, I know I have an angel in heaven watching over me and my family. Because we made our own positive memories at the time, it helps to draw on those and be able to talk about him. A nursing friend gave me very good advice for my other children. She told me to take them to the shop to buy a soft toy for their baby brother (as they would under normal circumstances)and my husband brought the toys to Jack, (my children weren't able to see him). We told them Jack smiled at the toys and he held them but because Jack couldn't come home with us, he wanted them to look after it. My friend told me that in the midst of adult suffering, the boys would use the toy they chose as their link to Jack. I was told that even if the toy was discarded in the corner that in a few years time they may turn to it for comfort in difficult times. Jack died over 3 years ago now and my 2 oldest boys (now 11 and 9) always choose Jack's toy to cuddle with when ill, or worried. It really was great advice. It's hard to grieve when you're protecting others. Don't get me wrong, my heart is breaking now as I'm writing this, but Jack is still my baby, I will always be his mother and with God's grace, one day, I will hold him in my arms again.

Pa Nyia Vang said...

This is such a sweet page you made for your love one!!!! You baby is so beautiful.

If you don't mind I'll like to share my story too.