Today I’m featuring a guest post by Kristin, who is sharing her daughter Callie’s story. I would like to mention a possible trigger warning for infant loss. Please leave Kristin lots of love today, either here or at her blog Our Sunshine Angel.
Hi everyone. My name is Kristin and my life has been forever touched by Marfan syndrome. Here is my story. Our daughter, Callie, was delivered via C-section on Jan. 27th, 2012 and after making one small tiny cry, her heart stopped beating. My husband, John, and I waited anxiously while doctors worked frantically to revive her, which they did after 15 long minutes during which Callie’s brain was not receiving oxygen. We were shocked to learn that, along with severe heart problems, Callie was also born with some physical abnormalities with her hands and feet. Her fingers and toes were long and slender. My pregnancy had been normal and ultrasounds had come back with no indication of anything wrong. The rest of this day and into the next were a blur… Callie was transported to Children’s Hospital in DC and John went with my mother to be with her, while I was left to recover from surgery in Reston. Thanks to an angel named Nurse Cindy, I was transported later to Washington Hospital (nextdoor to Children’s) so that I could be with John and Callie.
The doctors and nurses at Children’s Hospital were absolutely amazing and did everything they could to give Callie a fighting chance…but ultimately, she was just too sick and her heart was not strong enough. Callie’s brain had suffered so much damage from the lack of oxygen that she had no brain function. In our short time as parents, we had to make the hardest decision of our lives…to remove Callie from life support. It broke our hearts. The doctors and nurses allowed us to have a celebration of life that day. They let us hold her and rock her, even with all of those tubes and cords. They let us give her her first bath and change her diaper. We dressed her up in a sunshiny yellow onesie and a beautiful white headband. We sang to her and talked to her. We lived, we really lived…and so did Callie Marie, for 35 short hours. She was baptized in Reston before being transported and the priest at Children’s said some beautiful words as our friends and family said good-bye. And, later, with our pastor by our side, John and I said our own “see ya later” (not good-bye) to Callie Marie as she passed peacefully in our arms on Jan. 28th.
We have since learned that Callie had the most severe form of Marfan syndrome, referred to by some as Neonatal Marfan Syndrome. John and I have had genetic testing done and were found to be free of the genetic mutation that caused Callie to have Marfans. This means that her mutation was spontaneous and random. I have been blogging about my experiences at oursunshineangel.wordpress.com and it has been so therapeutic. My heart goes out to anyone else who has lost a loved one to Marfan syndrome and to all of those who are affected in any way. Callie’s death is still very fresh and raw, but I hope one day, as I heal, to be able to bring more awareness to Marfan syndrome and to advocate for more fundraising and research. I am particularly interested in prenatal diagnosis. Maya has done so much good for this community through this blog and I hope that I can contribute in some small way as well. Thank you for your companionship. It helps to be a part of a group of people who “get it”. xoxo, Kristin