I don't even know how to explain how honored I am that I got to take newborn pictures for this family. Mia was born with Trisomy 13 her parents were not aware that she had this before she was born. Trisomy 13 is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. The occurrence of a trisomy is a spontaneous event that happens at the moment of conception and cannot be prevented. The extra genetic material interferes with development. Usually, a woman carrying a fetus with this disorder has a miscarriage around the 10th week. It is incredibly rare for a child with this condition to be born alive. (The reason that it took so long for the doctors to diagnose her is that she didn’t present with many of the physical symptoms associated with the condition.)
Mia has less than a month to live. Mia was born with 12 fingers and 12 toes but other than that there are no visible differences between you and I. She has 3 holes in her heart and her organs are just not working right. When I was there taking her pictures her chest was contracting a lot to breathe and she kept her hands tight underneath her chin. She was comfortable though and the most smiley newborn I have ever photographed.
As a mother I don't even know how to comprehend how this family is feeling. How can one sit and rock their baby knowing that she may not live until tomorrow. It just breaks my heart. They are such a strong and wonderful family and were cherishing every moment...taking video of her day and big photo shoot:) I will hug my children a little bit tighter and cherish life a little bit more because of this special little girl who has touched my heart so very much.
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