Musings of a Marfan Mom

Callie’s Story

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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


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25 Comments

  1. Thank you for sharing your story. Your strength is inspiring! I agree Maya is pretty darn amazing but after reading your story you have to know how amazing you are too!!! Sharing raises awareness and that can save lives. Hugs

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  2. She is beautiful, and I don’t know what else to say except thank you for sharing your story. My thoughts will be with you and your family. I think your daughter’s life will continue to make a difference in the world.

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  3. Your story is beautiful and powerful and took alot of courage to share. Thank you, and I hope your own broken hearts will heal and forever carry memories of your time with your beautiful daughter.

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  4. Thank you for sharing your story. My son Jonah, who had Marfan Syndrome and additional special needs, passed away in October. Know that you are never alone in your grief. ((hugs)) Callie was and is beautiful.

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  5. I’m so happy that you shared your story with our marf family :) hugss

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  6. How beautifully written, Kristin. Thank you for your strength in sharing Callie’s story with all of us. Love and prayers to you, John, and Callie.

    I look forward to the time when you are able to advocate for our strong community! I’m sure you will be just as inspiring as Maya!

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  7. I am having a hard time typing through my tears; thank you for sharing your story with us. As I read your post and visiting your blog, I realized we are neighbors — Reston is about 5 miles from me. And each time I look at the window and see the sun shining, I will think of Callie — prayers to all of you. —Jaime/SoCalledSupermom

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  8. You and John are such brave parents. Much love to you and Callie.

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  9. Thank you so much for sharing, I wept while reading your blog post. She truly was an angel. My thoughts and prayers are with you and your family .

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  10. Difficult to type through the tears….thank you for sharing your beautifully brave and loving story.

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  11. Your daughter is beautiful and you and your husband are amazing parents. A life, no matter how short, is a blessing. My heart grieves for you but I am so happy you have allowed us to get to know Callie. Stay strong and remember that though she is gone from us, you will always be Callie’s parents and that she has changed the lives of so many people thanks to you.

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  12. Thank for for sharing your touching story, and for giving that sweet girl so much in her too brief hours of life.

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  13. I am so sorry that Callie lived such a short time – I have faith that you will see each other again, but I imagine that is not very comforting right now. We are better for knowing your story and I hope that telling it helps heal your family. Thank you for sharing Callie’s day with us.

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  14. So sorry to hear your story and I admire your courage and John’s in sharing this with us. You were in a good place as they helped you have a celebration of life for Callie. I know you will treasure those special moments with her. Someday I hope there will be no child or adult that has to deal with Marfan Syndrome. May God Bless you and give you comfort in your loss.

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  15. Thank you for sharing your story, Kristin. The Marfan community is amazingly comforting, and I hope you find some comfort by sharing your story with us. You sound so strong even in your heartbreak. Callie is beautiful!

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  16. My dear woman. My daughter has Marfan Syndrome. I understand the struggles you have gone through. No, my daughter has not passed away but she is 11 years old and has had four surgeries already. God give you strength.

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  17. You know of my son Daniel already, I just want to say how much my heart goes out to you, you are so brave, thank you so much for sharing your story xxx

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  18. John & Kristin-
    there are no words to express my admiration and love for you and for your sweet Callie. Thank you for sharing your story and inspiring others to do the same. Hang in there.
    Hugs your way,
    Valeria

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  19. Just read ur story about ur beautiful daughter callie,so so sad tht she only had a little life.u r so so brave.my heart goes out to you and your family.you really r an inspiration…also its good to read about the wonderful work of the medical staff at the hospitals,our job as parents is very tough but their jobs are so tough and they really dont get the respect and acknowledgment they deserve..lots of love to u x

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  20. Thank you so much for all of your kind words! It is nice to hear from all of you! xoxo, Kristin

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  21. Thanks for your story. I cried through most of it. My son is now 20 months and also born with severe marfan, spontaneous. He went into heart failure 6 months ago and had heart surgery and is doing ok now. Stories like yours remind me how far we have come and how lucky/blessed we have been with Brody.

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  22. Your story is so touching and what a blessing you was given. You are very lucky to have experienced being parents even if it was for such a short time. Some will never be given the opportunity to have that at all.
    My granddaughter was born with Marfan Syndrome. Her name is Jordyn and she is the love of our life! She is 3 yrs old and had heart surgery before she was two. We were blessed!
    Thank you for sharing your story and may God bless you and your family!

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  23. I don’t know if you are actually on this blog, I’m a French woman, I’m 32 years old. My daughter, Wendy, was born on 21 january 2014 and she has a marfan neonatal syndrom. She fight aigainst this terrible disease during 4 months (with 3operations) and she died on 27 april…Doctors always said to me that it was extremely rare and I though I was the only one because in france there is nothing about this on internet. All my photographies of my little sweet baby looks like yours, it’s very..I haven’t words…I stayed every day with her has to love her as much as I can. Is onsider her as the biggest wonder beautiful baby of the world and I praid so that the doctors made an error of diagnostic…I understand very clearly that you feel. The tragedy is that I have a marfan syndrom and i was followed by a gentician before to have my baby and during my pregnancy and her neonatal syndrom did not appear because it was not on the usually genes studied for this casas. So they said to me all is good and the day of her birth was an horrible nightmare.I had 10 echographies, a study of genes and they saw nothing.When we are followed as well and reassured we say to ourselves that everything goes well…Unfortunately, as told me the geneticist, when we do not know for what we look, this kind(genre) of disease is so so rare that, an affected(touched) child has less to have had already, we do not know how to or look for him(it) in the study of genes, and we have even not the idea to do it.Especially as arrives even less to a child having a parent with classic marfan.. I am wholeheartedly with you, I wish you of the happiness

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    marfmom Reply:

    Pauline, I am so sorry for your loss. I will make sure that Kristin sees your comment to her.

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  24. Hi Pauline, my heart is so broken for you. You are getting so close to her birthday…I know how painful that is :-( I am so tremendously sorry for your loss and I am praying that God gives you love and comfort in each coming day. Please feel free to visit my blog oursunshineangel.com for my contact info if you would like to stay in touch. I am here to listen any time. Xoxo, Kristin

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