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, March 2, 2009

Hailey's Story...Her Life (Part 3)

I thank God for day three!

I started day three more rested and more focused. I still had more questions that needed answers, so I spent the majority of the day in front of the computer. I continued to research Hailey's condition - no cure. There is no known cause of trisomy 13 or HPE, but really knowing the cause wouldn't change anything at this point. I also researched the option on the table, never really knowing what to look for. However, everything I found made my heart heavy and made the pit of my stomach fall even deeper. It was clear that this just was not an option for me.

The rest of the day was very quiet as scattered thoughts and facts seemed to piece together. The reality of Hailey's condition was becoming a clearer picture, and I was finally able to see what I was looking at. First, Hailey had trisomy 13 and alobar holoprosencephaly. Second, this happened at day one, and there was nothing we had done to cause it. It was a random, rare miscalculation of her chromosomes. Finally, Hailey was ultimately going to die. Now what?

That night, our lives were changed forever.

At 6:00 p.m., Dr. Martin called to tell us the amnio test came back positive with trisomy 13. There was no need to have us come in to get tested, there was no need to worry about Ryan, and there was no need to worry about future pregnancies - which was not something I had even thought about. I explained to her how I felt about the clinics, that it simply was not an option. I remember reading that some hospitals assisted with terminal children and asked what they did. She explained the procedures and technicalities of it all, but it was still all the same.

Then she told me exactly what I needed to hear, "Rachelle, your other option is to continue with the pregnancy." That was it! That is what I wanted! Was I just waiting for someone to remind me of my other option? It's like the intense amount of devastation and grief we felt on that first day completely wiped out the fact we even had another option. I can't even begin to explain the relief I felt. The slate was wiped clean, and we were going to start celebrating every day of Hailey's life we had left. God had answered my prayer and we had made the right decision. The right decision for us and for Hailey. She is alive, and as her parents, we will continue to love and nurture her until God decides it's time for her to go home.

But what about when people offer their congratulations, what about setting ourselves up for more heartache later, what about passing the girls clothes or the unfinished nursery, and what about watching our daughter die. Here's my answer: Thank you for the 'congratulations' and 'well wishes'; we are excited about having a baby. Our heartache will be the same, because we are already as attached as we can get to our little girl. Every time I pass the girls clothes in the store I will be reminded that I have a daughter. Even if the nursery goes back to having a spare bed in it, it will always be Hailey's room. And what more could I ask for then to have my child peacefully die in my arms, feeling my warmth, and listening to me tell her over and over how much I love her.

We know, without a doubt, the joy that will overcome us when we lay eyes on our beautiful little girl. Whether God decides for it to be now or later, I will be blessed knowing it was God's decision and not that of our own.

God has given each of us a place and a purpose in this world, and Hailey's was made clear three days after her story here began. After three days she open our eyes to a world we had never known before. A world filled with the amazing power of faith, life and love. Three days, and our journey with Hailey had only just begun. That journey is of Hailey's Hope and one that is worth sharing with you now.

God Bless!

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