Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.

God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

Psalm 139:13-16

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Monday, April 19, 2010

From Hailey, HOPE

Rachelle Glavin had just 42 minutes with her newborn daughter, but gained a lifetime legacy.

Jefferson City News Tribune
Monday, April 12, 2010

By (my friend) Angie Hutschreider

There is nothing like a mother's love.

A mother's love, like her dreams for her children, begin the moment she finds out she is pregnant. A mother's love will see her and her children through anything.

Rachelle Glavin grew up in a family that had a strong foundation of faith, and that foundation was laid by her parents, Perry Carey and Rita Carey Gerhardt and 'Gram' Ada Croy.

"My parents poured the foundation of my faith as a child, and my Gram, now 100 years old, continues to shed her amazing faith and wisdom on me," Rachelle said. "It also grew from watching my dad envision and obey God's calling to unite the children of God as one - that vision was the United As One Christian Festival which resides on the steps of Missouri's Capitol every summer."

Glavin, a Jefferson City native, and her husband, Tim, married five years ago, and one year later they had their first child, a son, Ryan.

"Honestly, we were a little scared at first by the prospect of becoming first-time parents, but after Ryan was born we knew of no greater joy. Then we found out that Hailey was on her way, and we were instantly overjoyed and excited to bring a new baby home to our family. Our hearts could never be prepared for what was in store for Hailey's life," Glavin said.

At the 20-week ultrasound, the Glavin's learned of their unexpected reality.

"Hailey was diagnosed with hologrosencephaly, which was identified by her physical abnormalities," Glavin said. "An amniocentesis was performed, which confirmed that Hailey also had full Trisomy 13. After both conditions were diagnosed, along with abnormalities of her heart and kidneys, Hailey's prognosis was inevitable - our daughter was going to die, and there was nothing, as her parents, we could do about it. That was the moment that changed our lives and literally brought us to our knees."

Given a 3 percent chance of surviving to term, Hailey faced great odds, but her parents' resolve was strong, they had a daughter and were going to honor her life and the time they had with their children.

"Throughout our journey we held on to the hope God gave us, and it was that hope that brought us to June 12, 2009, when Hailey was born full-term and lived in our arms for the greatest 42 minutes I'll ever know," Rachelle said.

Last spring, while still celebrating Hailey's life, the Glavin's began spreading awareness of Trisomy 13 and hope. Then they found further purpose in Hailey's life by working with the March of Dimes and Hailey's Hope.

"We were first introduced to the March of Dimes after sharing Hailey's story, and immediately we were on board to support their mission to reduce prematurity, birth defects and infant mortality. It's a mission we are grateful for as the parents of our healthy, happy 3-year-old son, Ryan, and it's a mission we embrace as the parents who are left to love and remember the life of our daughter, Hailey," she said. "We commemorated our team to Hailey's Hope, which is the blog we started to share our journey and Hailey's hope with the world."

The blog, (, the March of Dimes team, and Glavin's willingness to reach out to other mothers and families in their darkest hours, is all to honor her children.

"I believe this journey has opened our eyes to see and do things for which we had taken for granted. And along the way, Hailey taught us to rejoice in the blessings you have and give so that others may share in those blessings for the future. And we are so grateful for the generous love and support we received from our familiy, friends and community to be able to remember Hailey's precious life and secure the precious life of every baby," she said.

Glavin is also working to develop a Web site, Hailey's Hope Project, that will allow other families to reach out to one another, find resources and more.

"This journey is something that life doesn't prepare you for, and when you hear the words that speak to the fate of your child all hope can feel lost and obsolete, but it's not," she said. "Hope is there, living with a beating heart inside you, and she's there with you each morning and sees you through each night. But then one day when your hope parts from you, you find yourself lost once again until you realize that she's still there, now living within the beating heart inside you."

Even now, 10 months to the day after spending Hailey's 42 minutes together, the family is strong in their faith and in Hailey's legacy.

"This journey holds so many unanswered questions of 'why', 'what now' and 'what next' that I can't even begin to answer, but God knows," Glavin said.

"For me there came a point when needing the answers stopped being immportant, and what was important was His plan, and the only thing I needed was to put my love and faith in Him. How blessed we are that He has a plan for our children, and that our children are part of His plan for us."
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14