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.

Saturday, February 28, 2009

Hailey's Story...Breaking the News (Part 1)

This past week has been a busy week, but now that it's settled down a bit I'd like to go back and share with you those first days when we where told of Hailey's fatal condition. This story may sound familiar to those families who received the same news we did, "your child is going to die".

Hailey's story began on Tuesday, February 17, 2009 at 9:15 a.m.

It was on that morning my routine 20 week ultrasound was scheduled. Tim had decided not to go because he didn't want to 'accidentally' find out what we were having. I was OK with that; I was also OK with 'accidentally' finding out. I had been hoping for a little girl for several reasons. I longed to finally shop for some seriously cute clothes. I pictured Ryan being a protective big brother of his little sister. And after my dad passed away, I wanted Tim to experience the wonderful bond between father and daughter. But when it came down to it, boy or girl, I didn't care. I simply wanted our baby to be healthy.

Now when I look back at that day, I remember being very nervous sitting there in the waiting room. I thought it was just because I was so excited, but now I think it had more to do with an unexplainable uncertainty.

When I got back there, I was ready, but the question of my baby's health never entered my mind. I was just ready to see her (I referred to Hailey as 'her' from day one, and Tim was quick to correct me). My first look was of her entire body, head to toe. She looked perfect! I had no idea she was actually 3 weeks behind in size. She was breach and the next thing I saw was the top of her head. That's when I knew something was wrong. Even for an untrained eye, you could make out the outline of her skull and inside was a much smaller white circle with black holes. I immediately asked, "What is that?" and the technician's response was, "Honey the doctor's going to have to talk to you." My heart broke. Silent tears streamed down my face and all I wanted to do was get up and call Tim. I endured the next 3 minutes on that table. Finally, I couldn't wait any longer and asked, "Is it bad?". She told me she was going to have to take some pictures, but she couldn't tell me anything for sure because she could tell me one thing and the doctor could say it's something different. Well I knew enough to know that when something went wrong in that room, no one was to say anything until the doctor came in. I also knew that no parent received that many ultrasound pictures for their baby book.

When we were finished, she took me right into an exam room. I called Tim immediately. He was with a customer, but I said it was an emergency and I had to speak with him. When he got on the phone, I was crying and told him he had to come right now and that something was very wrong. When Tim got there, Dr. Dodson came in and said all the numbers looked good and the previous blood tests came back normal. Then I asked, "What's wrong?" She calmly sat down with the ultrasound pictures and said, "I think this baby has a big problem." From there the world stood still, time didn't exist, my mind shut down... and I cried. I heard bits and pieces about her brain, her face, her heart. Tim was by my side and I cried. I couldn't register anything. She said how very sorry she was - she knew the year I had with my dad. I remember my first thought sitting there was that 3 months ago I could have saved my dad's life if I had only given him my kidney. But we had gotten pregnant and now that life was possibly gone as well (we didn't know Hailey's prognosis at that point). I can't even begin to describe the guilt I felt. I couldn't save my dad's life, and now I had ruined my child's.

Dr. Dodson was going to refer us to a specialist in Columbia, and all I had to say was that we had to go today. I could not wait for whatever it was I needed to know. From what I've read from other families, we were lucky to have gotten in the same day. I couldn't imagine parents that had to endure a whole week of uncertainty for an appointment, we only waited 2 hours.

On the way to Columbia, my mind was scrambled. I didn't know what to think, what to expect, what to do. I didn't know anything except that something was wrong with my baby!

Once again we were in that room. The technician looked in our file and said "So it looks like your having a girl?" No, we didn't, but a part of me forgot why we were there for a second. She told us that she was going to take a good look from top to bottom and that she would explain everything we were looking at. For about 45 minutes we watched our little girl bend her legs, put her feet under her bottom, grab her knees, stretch her arms over her head. It was the most incredible 45 minutes of my life. Then we saw her head, and inside was a smaller matter that I knew was her brain. Nothing was said about her face, but this technology showed a clearer image that was hard to explain.

When the technician was finished, we waited for the doctor. Dr. Martin came in and introduced herself. She was incredibly nice and we immediately knew we were in good hands. She asked us a couple of questions, and for another 15 minutes she took a closer look. She was quiet as she took measurements and looked at things foreign to us. She promised that she would explain everything when she was finished. We listened to Hailey's heartbeat. It was beating strong at 183. When she was finished, and the pictures were printed, we were taken into a consult room. It was there that Tim and I started stuttering our wondering thoughts...

Tim: "She spent a lot of time looking at her heart."
Rachelle: "Yes, she did."
Tim: "How could something be wrong with her brain, when she moved around so much?"
Rachelle: "I have no idea."

My mind was busy scanning: I painted our room last weekend, I do too much lifting, I ate a tuna sandwich for lunch last week, I don't know when to stop and relax, I know I've breathed in different house cleaners...the list went on and on. As soon as she came in, I asked them all. She told me to stop, that this was nothing I did. I didn't understand how it could be anything else.

She asked what we knew so far, and when we told her she said, "Yes, this baby has several serious problems." That didn't make any sense to me either, because we had just spent an hour enjoying her move and stretch. We didn't see anything to make us think she had "several" things wrong. She was a perfect, normal little girl. She told us that the baby has holoprosencephaly (HPE). There are different levels of severity, and our baby had alobar HPE (the most severe). She showed us the facial profile of the baby and explained what the baby should have - but she didn't. The list lengthened to include discussion of her heart, her kidneys, her body size, her feet, etc. I was floored. I was taking it all in, but I didn't know what to make of it. She talked to us about chromosomes, and specifically the 13th chromosome. She believed Hailey had an extra one that caused a chain reaction of abnormalities in her development. I was quiet, but the tears were burning my face.

When all was said, Tim asked, "So what now? What can we do when she's born?" I interrupted and said, "Honey, she won't make it. She has too much wrong with her." Then the tears spilled over even more. I had said it. I had said it before I had to hear it. Dr. Martin confirmed my fear and said, "Unfortunately, there's nothing we can do." If she was able to live to term, and if she survived through the birth, she would only have moments to live. Open heart surgery, IVs, life support wouldn't do any good. The best thing we could give her was love and comfort. Something she said though struck me, 'if she was able to live to term.' You mean I could loose my baby before I even had a chance to see her or hold her? Now I was afraid. I was afraid to loose my baby girl, and I was afraid I would loose her before I even had a chance to meet her. It was too much. This day had been too much. I woke up today with optimism and excitement, and in a couple of hours my world was turned upside down by confusion and an extreme form of sadness that I had never in my life felt before. My heart, my soul, my mind was in continuous torment...
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