August 2017
Sometimes it takes a tragedy or major event for you to realize all the good things in your life. There are so many different ways I can look at my situation as a mom, specifically to my two daughters.
Lucy Rae has a story of her own, but sometimes I can get so sad and frustrated with her “diagnosis.” No mom wants to hear their child is different or not normal. Some nights I cry as I think of the crazy day we had and how it would have been different without her extra chromosomes. Some days I am embarrassed by her walk, or her look. Some mornings I am worried to start the day, not knowing if she will be able to measure up to her peers. But, to think of what her diagnosis could mean or how it could have manifest itself could be a whole different type of journey for me. Lucy could/should not even walk or talk ever. She could have never done a lot of the things that she is already doing and thriving at.
A few days ago, one of her Pallister Killian Syndrome sisters died. It is not the first time I have heard of a child with PKS dying in the last year since she has been diagnosed. To think that Lucy could have not survived the womb, let alone her first few years of life is devastating. It helps me to remember to thank God for every day with our Lucy Rae. She is quite literally an angel and makes life happier for all.
Madeline is a different story completely and so incredible in her own way. Unbeknownst to me, I contracted parvovirus while pregnant with Maddie. At some later point, without me knowing, she got parvovirus herself before 20 weeks in the womb. Long story short, this created major health problems for fetus Maddie and she needed a fetal blood transfusion at 21 weeks old (blood was give to her through her umbilical cord). The transfusion ended up saving her life, as her red blood cell count returned to normal and her high anemia levels and fluid in her body subsided.
Last weekend my medical student brother, Michael, was able to witness a fetal blood transfusion to a 20 week old baby. The baby was in even worse shape than Madeline and it was a final effort to keep her alive (babies born before 24 weeks are not old enough to survive outside of the womb). Yesterday I heard that this baby did not survive after the transfusion. The news of this was heart breaking and the outcome of Maddie’s procedure is humbling. We could have been in this exact same situation with a baby not surviving because of parvovirus. For some reason this is not my story, but I get to thank God again for blessing our family with another beautiful daughter.
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