Luke and I have been married since 2001. After trying for nearly two years to have a baby, we were thrilled when I became pregnant in March 2010. At our 20 week ultrasound, though, we learned that our baby girl came with a little something extra. She was diagnosed with Trisomy 21 (Down syndrome) and a congenital heart defect. About half of the individuals born with Down syndrome also have a heart condition. At that time the doctors believed she would need heart surgery at 2-4 months old which has a 95% success rate.
It was shocking how many doctors pressured us to have an abortion at that 20 week milestone. I believe life is precious and every human being deserves a chance to live. One doctor even asked me if I was aware that individuals with Down syndrome can have many other health problems in addition to the heart defect. It was appalling to think where this thought process would lead. If an individual is predisposed to many health problems, does that mean that we should decide for them that their life is not worth living?
To be fair, not all doctors in the several hospitals we visited pressured us in this way. Some of them took a more neutral stance, and others highlighted the positive side of things, stating that individuals with Down syndrome have productive meaningful lives in today's society. I later learned that 95% of women whose babies are prenatally diagnosed with Down syndrome decide to have an abortion. What a tragedy that so many precious lives are lost in this way.
So, we began to prepare ourselves to parent a very special little girl by learning everything we could about Down syndrome. In follow up prenatal testing we found out that her heart defect was getting progressively worse and was behaving less like an A/V Canal Defect and more like Hypoplastic Left Heart Syndrome (HLHS), which is much more serious and only has about a 50% success rate in children with Down syndrome for the three stages of surgery it requires.
Due to the serious nature of her heart condition, Liza Jane was born in the Special Delivery Unit at the Children's Hospital of Philadelphia (CHOP) and was immediately taken into instensive care. She spent the 7 weeks of her life there at CHOP and had her first reconstructive heart surgery in mid-December. Her body didn't handle the new way her heart needed to function very well, and Liza Jane returned to heaven on January 1, 2011, while we held her in our arms. Luke and I miss her with all of our hearts and look forward to the day when we will see her again.
This blog was started in the hope that others who are grieving will be comforted to know that you are not alone. I endeavor to be as real as I can be about what the grief process is like for me. Your circumstances are unique, and I don't pretend to know what it is that you are going through, but I sympathize with your pain. I hope and pray that you will find peace in the God of comfort as you work through the grief process.
Over time, the blog's purpose has also been extended to tell the story of our adoption process. A wise person told me that when more children come into our home, we will not stop grieving our first daughter. She will always be a part our lives. We are excited, though, about bringing additional children into our family through adoption, and we invite you to share our jourey.
You're invited to read this Welcome Message, browse the blog, and share your own stories in the Comments section of any of the posts.
This blog entry tells more about the early stages of our adoption process.
