My name is Katie and my husband and I have lost two daughters to short rib polydactyly syndrome type two. I want to share what we did that helped us find peace and closure from our precious losses. In June of 06 our first daughter, Michaela Leigh, was diagnosed with SRPS. At that time I was so severely ill and was in and out of the ER with dangeroulsy high temp, horrible cramping and even vomiting blood. Due to the state of my condition the Dr.s offered me extraction. My husband and I were so shocked from everything, and I was in such a horrible state, that we listened to the Dr. That is, to date, one of our biggest regrets. I had no closure: I never got to see her, hold her, kiss her, nothing. She was just here one moment and gone the next. When we became pregnant in 07 I was extatic and naive to the fact that this rare condition of SRPS could happen again. But, three days before Christmas it was confirmed that our second daughter, Alayna Diane, was indeed an SRPS baby. I chose to take a different route, and was blessed that my health with this pregnancy was so much better then before. We induced labor and Alayna was a stillborn, but we got to adore her perfection in our hands. I felt such an amazing sence of joy and peace to be able to hold her, baptize her and share her with the family and take pictures of her. The pain of birth and delivery and the pain of emmotions was worth the chance to see me daughter. And then we decided to make another choice: donating her body to science. We offered our daughter to Cedar-Sinai in California for an autopsy and extraction of DNA for further study. This act helps Jeff and I feel like our child had a purpose in this world, a gift to offer. This also gave us a sence of peace and a form of joy that our child would be treasured by the Drs. needing to study this syndrome, and that our sacrifice would help other families in the future. Alayna was cremated and returned to us, and we decided to set her date for May 24th, her due date. This allowed us time to be 'near' her and deal with our emmotions and what just happened.
For the funeral, we decided to have both of the girls' names on the headstone with their birth dates. We found a very small casket that allowed us to place Alayna's urn and a blanket my mother had crocheted for Michaela, as well as letters from me and Jeff to each girl and other precious items. For the service, Jeff and I walked in and lit two pink candles and as we walked out we blew them out. This was a very symbolic thing for Jeff and I to do. During the sermon we played a video that we had made for us. It was a compilation of the girls' ultrasound videos mixed with specific bible verses that speak of children and human creation. The song that we had playing with it was "In a Cradle of Wings" and it was beautiful. By the end of the service and buriel Jeff and I felt that we had complete closure. We will always miss our daughters, but the pain is not the center of our days, lives or marriage. I hope my stroy can give you peace and encouragement, and I would love to hear what your story is.