I intended to get this posted sooner but my little zoo crew at home had different ideas.
Today is officially CDH awareness day. While we should be spreading awareness every day, today gives us the opportunity to take time and be intentional and be diligent. I ask each of you who read this to tell 5 people you know about CDH. Tell them that it affects 1 in 2000 babies, more than Cystic Fibrosis and more than Spina Bifida. Tell them that the survival rate is a frightening 50-60%. Tell them that there are only 100 hospitals in the country with ECMO machines, which are crucial lifesavers for many, many CDH babies. Tell them the often lifelong challenges these little ones can face after overcoming the hurdle of surgery, learning to breath and getting home from NICU. Tell them that you know a babe who has survived CDH named Liviana but there are many others who have become heavenly angels.
My hope is that more people in the medical community will learn of CDH and begin researching the potential causes or genetic links. I want more doctors in more hospitals trained and experienced with CDH. I want more hospitals to have ECMO available so families can stay closer to home and so undiagnosed babes will have a better chance at survival. I want radiologists and technicians well-trained on what to look for so families can prepare and medical staff can be ready for these little ones arrival. I desperately want for not one more family to face this often devastating diagnosis.
I have been typing this with one hand with my sweet angel snuggled in my arms. I feel blessed to have her here and hope that her presence in our lives can make a positive change in someone else's life.
Below are a couple of ribbons that you can copy to your website or e-mail signature.
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I took a "poster" of Sabrina and her story (very brief) to church on Sunday along with a spool of turquoise ribbon and had it displayed--several people took a length, but more could have. Oh, well, one person or two persons at a time is a step. I included names of other CDH babies including Liviana as in " CDH is also children with names like Sabrina, Liviana, Ned, Cadenne, Sofia." I had pictures of Sabrina on her birthday and while on vents, and stuff and then a recent photo of her in her carseat--smiling away. I think having names to a disease puts it in the "real world". If I have opened one person's eyes to the situation, I will be pleased.
Jean, Sabrina's gma.
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