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Stories of Lost Children

To Bella's Family
by Christy, Pensacola, FL, U.S.A.

Just like you, my family also lost our sweet baby girl to Thanatophoric Dysplasia. Lily Grace had type I. She was born and received her angel wings on June 3rd, 2004. She only graced the Earth for 51 minutes. Although our story was a little different. We found out at 16 weeks that our midwife wanted a more thorough ultrasound because our baby looked short- possibly dwarfism short. I was not worried when I went to the 2nd U/S. I figured she was just small, or maybe the dates were slightly off. I sent my husband to work, my other 2 girls to school and headed off to my appointment alone. My Mom offered to come, I told her it was fine, to go to work. My mother-in-law showed up at the Dr.'s, to see the ultrasound. After the ultrasound we were taken to a room where a Perinatologist rudely informed me he believed my baby had Thanatophoric Dysplasia Type II, and my husband and I should termintate the pregnancy. I asked for an amnio to prove this diagnosis.

The results came in 4 weeks later, positive for TDI. I was devastated and had to decide to terminate or not. I decided not, I would give my daughter what precious few minutes of life I could. I chose to be induced at 32 weeks, so that my older daughter, Emily-age10, could grieve before she started Middle school the 1st week of August. When Lily was born she was very blue and barely breathing. We had about 15 family members and friends waiting to hold and love her until she was gone. I think she knew how much she was loved, and even though that moment is the one I had dreaded being able to get through for 3 months, she passed on peacefully. At first, I was mad that I knew all that time, but looking back I feel that I did most of my grieving before she was born, which helped me to be able to help my hubby, and daughters get through this as well.

I have a page for Lily and I am trying to put together a website for parents and families who have lost precious little angels. Anyone who needs to talk or just wants to....feel free to email me at mommysangellily@aol.com or Crazy1csd@aol.com.

God Bless everyone who has been through this!!!


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