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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, February 9, 2012

Educating the medical professionals one at a time

I was thinking about Lilly and her laptop earlier and thought it would be fun to post these pictures. They are from mid-July of last year. The laptop was a birthday present from her little friend Emily. Emily, who has full Trisomy 18, is now SIX years old. Yay Emily!

Last week my friend H.B., who is pregnant, e-mailed me that she had gone for her ultrasound and ended up doing a little "Lilly evangelizing" while there.

As the ultrasound tech looked for "markers" for several Trisomys and other conditions, H. asked a lot of questions. The tech finally asked H. if she was in the medical field. H. told her "no" and then told her about Lilly's LIFE with Trisomy 18.

The tech asked if Lilly died because of her heart. H. told her that Lilly had had heart surgery the month before she died. The tech was shocked - and said so. She asked H. in bewilderment "She had heart surgery? They were able to get someone to do heart surgery on her?" H. told her "yes" but that we had to go out-of-state to Florida for it.

H. said that the tech finally said that she learned something new every day at her job. And that that day she learned that babies with Trisomy 18 can get heart surgery. She said that she was going to share that with the perinatologist she worked with.

H. urged her to do so and stressed that Lilly was a happy, sweet girl and that she died peacefully and quietly in her sleep. And that she brought a lot of joy and love to others around her. H. told me that she wanted to say things to get the "painful, miserable life" pictures out of the tech's mind, as that is what so much of the information out there leads medical professionals to believe.
I so enjoyed reading H.'s description of all this, and I really was happy that Lilly's life could be shared with yet someone else. Not long ago, H. had also told me that she had told her O.B. about Lilly and the doctor had been so shocked to hear Lilly lived to be 17 months that her jaw literally dropped.

Yay Lilly! I'm just so proud of my little girl. She was so amazing. And amazing things still happen to us because of her. Thank you thank you God for choosing us to be Lilly's family. We were and are blessed beyond measure for every second we had with her.

And thank you H. for sharing Lilly's life with others! I can't wait to go in for my ultrasound this spring so I can share Lilly's life with the tech. I have my purse ready with pictures of Lilly smiling and my Lilly "business card." I want her story told to anyone that will listen. I want more people everywhere to know that Trisomy 18 is not a horrible thing. I want them to know that there are children that live for years with it. There is so much misinformation out there. But by being vocal we can change that.

One other interesting thing H. told me (which has nothing to do with Lilly) was that the tech said she usually tried to wait until the end before she would tell people the gender of their baby. She said otherwise most people that come in are texting, distracted, or just plain disinterested. I was surprised as I read this. How can people not be interested in watching their baby on the monitor? It's fascinating! And honestly - you never know if that will be the last time you see your baby alive. Every minute should be treasured. I know I felt that way with every one of the ultrasounds I had with Lilly.

Every baby - including Trisomy babies! - are "fearfully and wonderfully made."

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." - Psalm 139:14


  1. Carol in New ZealandFebruary 10, 2012 at 1:48 AM

    I am sitting here SMILING with joy, reading about the ongoing marvel that is Lilly and her family. Mama, you are amazing. It is no wonder Lilly was amazing. You all have enhanced my life and I do all I can here to educate people about the possibilities of life with Trisomy 18. xx

  2. You must be so proud of your daughter! Her godly heritage lives on. She has changed my life and given our family inspiration! The Lord is continuing to do a great work in your family. Thank you sweet mama for sharing your girl with us even after she is with Jesus.

    With love,