I am the type to plan out everything. Even though I couldn't wait to have kids, I waited for a few years until the time was "just right". My husband and I were thrilled when we found out we were expecting our first child. Our baby was due May 16, 2009.
The pregnancy was going great. My husband and I are both healthy and we don't have any genetic problems on either side of our families. It never crossed my mind that our baby would be born anything but perfectly healthy, much less would have to fight for its life.
I counted down to the date of our 20 week ultrasound when I could finally find out the sex of our baby (and I could begin shopping!). December 23, 2008 had finally arrived! However, at our appointment we found out that the baby girl I had always dreamed of had Congenital Diaphragmatic Hernia (CDH).....and a 50/50 shot at life. I had never even heard of it, but began to understand how serious it was when the doctors gave us the option to terminate the pregnancy - a "late term abortion" that wasn't even legal to do in my state. We decided that we would not give up on our daughter and would do everything we possibly could to fight for her life. We had a crash course in parenthood and felt so helpless that our child was sick and there was nothing we could do about it. Our rollercoaster began.
My friends and family were all anxious for me to have the results of our ultrasound so they would know if we were having a boy or a girl. I would say, "It’s a girl, but...." Even after explaining the situation to them, they didn't understand why I was worried. Babies aren't supposed to die and surely mine wouldn't.
We spent the next couple of months preparing for our little girl to spend the first few months of her life in the Neonatal Intensive Care Unit (NICU). We took a tour, met with the surgeons who would operate on her, learned about the machines she would be hooked up to....everything we could to prepare ourselves for the stress of having a child in the NICU.
On February 25, 2009, we found out that our daughter had Ventricular Septal Defect (VSD) in addition to CDH. To learn that she had a heart problem was devastating, but we still remained as positive as possible until March 11, 2009. On that day we learned that our baby girl had more heart problems and that they would likely be fatal. Because of the CDH, her heart was displaced to the right and squished by organs and therefore couldn't form properly. We met with a board of physicians and even with the new findings, all of the doctors had no doubt that she would be born alive but said that she would likely die shortly after birth. I spent the last few weeks of my pregnancy enjoying feeling her move and trying to prepare myself to say goodbye to her. Strangers would stop me and ask me what I was having and when I was due and say, "I bet you're excited!" If they only knew...
Over the Easter weekend, I stopped feeling my active little baby girl move. Ava Rose Daher had passed away at 35 weeks gestation. My labor was induced on Monday evening and our beautiful daughter was born with angel wings on April 14, 2009 at 6:53 am.
Going through this experience is life changing. Unless you have been through it, you can never truly understand. Our goal with this project is to provide some source of comfort, no matter how small, to families going through similar situations.
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