Our story:

Six months into our marriage, my husband and I decided we were ready to start our family. We conceived pretty quickly in May 2007. We had a perfect pregnancy until week 36. At our typical doctor visit, I measured a little small and they discovered that my placenta was calcifying. To be safe, the doctors decided to schedule a C-Section quickly to keep our little girl's body from going into stress from the lack of nutrients. Within 4 days, we went from having a month left and discussing techniques to help through the birthing process to rushing around getting ready for the baby and preparing for surgery. The C-Section went great and Lilah Branden Hoey was born at 11:30 am on Tuesday January 29, 2008. The doctor had told us that we could take pictures after they pulled her out and Dustin, my husband, could carry her to the nursery while they finished putting me back together. However, after she was born they wouldn't let Dustin over to take pictures; they wrapped her up tightly let me kiss her and the nurse whisked her away with Dustin trailing behind her.

To our surprise she was born with a few physical deformities that we were told were not problematic by themselves but grouped together were indications of serious issues.

We experienced some trouble with the pediatricians at the hospital-they were pretty cold and would not say anything about what they thought might be the problem nor were they making any arrangements for her to be seen by specialists. Dustin began researching Lilah's symptoms online and discovered she could have a chromosomal disorder. I began to get angry that they were not doing anything to help our daughter and felt like they were just waiting until she could get off the oxygen so they could send her home with us to die. We found the Living With Trisomy 13 website and read about Rhema who was born in the same city and had the same problems. None of the doctors or nurses would say Trisomy 13; it wasn't until we asked our OB/GYN what she thought it was that we found out this was a high possibility. We called in the pediatrician and basically demanded that we be sent to a hospital with a NICU. Just in case our daughter had the chance to live, we wanted to give her the best care possible. We were transferred to the NICU in Florence, SC. Before we could even meet Lilah there, they had already had her seen by a cardiologist, the geneticist and the neo-natal doctor. Within 24 hours, she was seen by several specialists and we were filled with hope-all of her physical issues could be treated. We know God is Almighty and we prayed for a miracle that it wasn't Trisomy.

On Saturday, it was confirmed she had full Trisomy 13. Knowing the clock was ticking quickly for our precious little girl, we had my grandfather come and baptize her on Sunday. The nurses and doctors in Florence were incredible; the day of the baptism, they moved Lilah to different room that had more space and ignored the 2 visitor rule and let us have roughly 25 people in there for the baptism. Our wedding photographer somehow found out about our situation and he called Dustin Monday afternoon and showed up at the hospital within hours. He took beautiful pictures of our new family. We had great support from our families, but we were truly petrified of the decisions we had to make and what we should do. However, each time a decision needed to be made, God was right there and we had peace in our hearts. We decided to take her off everything and take her home to spend her final days. The hospital unhooked her and gave us a private room for the night before we left out Wednesday morning. At 11:30 that night she stopped breathing for a much more extended time than ever before, and we assumed it was the end. She came back, but the doctor told us this is usually the beginning of the end. She went through the same thing around 3:00 am and again around 7:00 am. That morning, she didn't come back and left us at 7:30 am. We are grateful that we got to hold her and kiss on her all night long. A few of the nurses came in throughout the night and cried with us and offered support. We know there is a special place in heaven for all of Lilah's nurses and doctors and we will always remember their compassion.

We miss her terribly, but take comfort knowing she is with Jesus. Her middle name is my older sister's, who died in a car accident in 1998, and I know Brandy is holding Lilah and loving on her until we can get up there.

We look forward to trying again later this year and pray that God will bless our family. We feel special knowing that He chose us to care for Lilah and we will always have a special place in our hearts for her.

Erin Hoey erinwess@yahoo.com

Erin and Dustin Hoey