Hailey's Story

If you are someone who just came across my blog or just started following Hailey, I will quickly share her story - if you want more information you can read the facebook notes I posted below - and if you already have read the facebook notes this next section will probably be repetitive for you.

My husband and I are 24 years old and had been married for a year and half at the time Hailey was conceived. We started trying, or "not trying not to have a baby," in January 2009. We found out at the end of March that we were pregnant. We were so excited! At this time Josh was living in Georgia for BOLC II and I was finishing out the year teaching in Illinois. Therefore, I had to go to my doctor's appointments alone. At one of the early doctor's appointments I had a multiple marker screening done - I really had no clue about screenings and in retro spec wish I had never done that first screening. I was surprised to hear my doctor tell me that the ultrasound for the screening came back positive as showing something potentially wrong with my baby. The ultrasound showed that Hailey had some more fluid than normal in the back of her head. Alone, this did not mean that Hailey had a genetic disorder (which is what the screening detects) but it meant that the chances she had one were greater than normal. To further determine the chance of Hailey having a genetic disorder the doctor had blood tests done. The bloodwork wasvdone the same day the ultrasound was done, but I had to wait a few days for the results to come back.

The doctor told me that if the results came back normal, then Hailey was fine. If the bloodwork came back positive, then that combined with the ultrasound suggested Hailey had a genetic disorder. The doctor asked me what I would do if both the ultrasound and bloodwork suggested that the baby had a genetic disorder - would I keep the baby or would I terminate the pregnancy? I remember thinking to myself, did she really just ask me if I would "terminate" the pregnancy or have an abortion? But she did...This was the last conversation I expected having at what I thought was a routine doctor's visit. She explained that even if everything came back positive, there was really no way of knowing Hailey had a genetic disorder unless I did an amniocentesis, which runs the risk of a spontaneous abortion.

Because of my beliefs and faith, I told the doctor that no matter what happened I would keep my baby. I also would not have an amnio because of the risks associated with it. It didn't matter what that showed anyway because I really didn't care about knowing if I was going to keep my baby no matter what and there's nothing that they could have done to "treat" or "cure" a genetic disorder anyway...

I left the office terrified and worried. I had to call Josh and tell him that our baby might have a genetic disorder like Down's Syndrome or something...that was one of the hardest phone calls I've ever made, and being so far away from him was very difficult - for both of us. Days past and I never heard back from the doctor's office. A week later I called to ask about the results of my bloodwork - they told me that if I hadn't received a call that meant that the bloodwork came back normal and there was nothing to worry about, but I wanted them to check just to make sure. The nurse confirmed that my bloodwork came back normal. So since the ultrasound was positive and the bloodwork was negative, the entire screening was negative. Therefore, I was told that the chances of Hailey having a genetic disorder were very low, and she should be a healthy baby.

So the rest of the pregnancy continued as normal and everything looked good. I felt confident that we would have a healthy baby especially because we ourselves were so young and healthy, but in the back of my mind was always the thought that there could be something wrong with Hailey.

There were no complications other than my high blood pressure the week Hailey was born, which is something that happens to many pregnant women. On December 1, 2009, when I was 39 weeks and a 3 days along, my water broke after being induced for 2 days. Hailey arrived at 6:04pm. On my birth plan I had made it clear I wanted Hailey put on my chest, skin to skin for bonding purposes, immediately after delivery, even before the umbilical cord was cut, which Josh was to do. After I delivered Hailey I waited to hear what all parents want to hear, the beautiful sound of a crying baby - and I got it. However, I knew something was wrong when she wasn't being placed on my chest, and I knew they were cutting her umbilical cord. I kept asking Josh and whoever else what was going on and what was wrong with Hailey. I didn't get any answers. Hailey was then rushed off to the NICU and I never even saw her.

Eventually I learned that it appeared as though Hailey's intestines were on the outside of her body and physically there were some things wrong with her. They told me that she had to be flown to another hospital that had a level 3 (I think that's what it's called) NICU because the hospital I was at didn't have the capabilities of taking care of a baby like Hailey. (If you want to know more about this you can read one of my facebook posts). The the doctors from the Children's Hospital ran a FISH test to try to determine what was wrong with Hailey and by the time the results came back a few days had passed. Right before Hailey was to undergo surgery to stitch up her stomach from having her intestines put back in, the doctors told us Hailey had Trisomy 18. We really didn't know anything about it, and they had to explain to us that it was a lethal genetic disorder - basically, she was going to die...

We received the worst news a parent could possibly ever hear. The future for Hailey looked pretty dark, and we learned more and more about Trisomy 18. Hailey's birth was a miracle in itself since most babies with Trisomy 18 don't survive birth. We also learned that most don't even make it out of a NICU or the hospital. So the fact that Hailey was able to do so well and come home with us was a huge blessing from God. And the fact that Hailey lived to be 36 days, over a month old, was also a miracle and a blessing.

We knew the entire time we had Hailey that we could lose her at any minute. I had a hard time mourning the future loss of her while she was alive. But we cherished every minute we had with her and did everything we could to make sure she was comfortable and happy. Even if she lived a short life, I wanted to make sure it was a full life and the best one she could have. While we were in the hospital and out of the NICU in a private room with her, we made sure she was held every minute - she was held in someone's arms for almost a week straight. When we got home we made many memories with her - car rides in her car seat, a walk outside in her stroller, Birthday parties, baths, reading books to her, singing to her, dancing with her, showing her Christmas lights and the Christmas tree, etc. I made sure she smelled the smell of flowers and felt different textures - I ran her hands along my face, across our dog's fur, across her stuffed giraffe, etc. Her daddy even wiped chocolate cake on her fingers and face... :) We covered her in kisses - eskimo and butterfly included. We gave her tons of fun nicknames - from munchkin to alien to booger... :)

The joy she brought us the 36 days she was with us and the continued joy we receive in remembering her is indescribable. We tried to give her everything we could as her parents, but she gave us so much more than we ever could have asked for...

So in looking back, I am glad that God worked everything out how He did... I'm glad the screening didn't show Hailey's Trisomy 18 because I probably wouldn't have enjoyed the pregnancy as much and I would have been labeled "high risk" and had more complicated prenatal care that wouldn't have done anything helpful in the long run. Also, I'm glad that the doctors didn't pick up her intestinal problem in an ultrasound because then I wouldn't have been able to have the natural, vaginal birth that I wanted and had.

For anyone who knows or has a baby with Trisomy 18 or is pregnant with a baby that has Trisomy 18 - I know that no parent wants their child to be sick or die and how devastating the news can be when you learn that your baby has Trisomy 18 - but know that that child is still AMAZING. Yes Hailey was sick and had many problems. Yes I was devastated to learn she had Trisomy 18. Yes I was devastated to lose her... and yes I wish she had been a healthy normal baby... but she wasn't...and that's OKAY. She was created how God wanted her to be created. I never imagined that she could be as amazing as she was since she was so sick... But she was the BEST baby and daughter I could have asked for. She brought me so much joy my heart overflows, even after her death when my heart is broken and she's not here, the memories I have of her make my heart overflow with joy. She was simply awesome. So to anyone out there who knows someone who is pregnant with a baby that has Trisomy 18 or another genetic disorder - please encourage them to not be afraid and keep their baby because their baby will still bring them so much joy and will touch and bless their lives forever...