I do not know you... I came across your blog trying to find answers to my sons Surfactant Deficiency. I hope you don't mind me leaving you a comment, but I am reaching out for anything at this time. We had our little boy on September 4, 2008 (37 weeks 5 days). Healthy and Beautiful. He developed Respiratory Distress shortly after the C-Section and was placed in NICU. He was then transferred to 2 different hospitals. At first they thought he had just aspirated and got an infection which led to a pneumothorax, they thought once that healed we would be good. Well, here it is October 1st and we just recieved devistating news that our son has a RARE Genetic Surfactant Deficiency that is fatal. I was wondering, where you are involved with the March Of Dimes if you have heard of other families with this disorder or if the March of Dimes has support groups? Anything would be helpful. Please email me if you have any information of support groups with the March of Dimes. We feel so alone, like we are the only family out there with this rare disorder. Thanks, for your time ashley_larsen2@hotmail.com
5 comments:
She is beautiful. I know you are truly blessed to have Anna here. Congratulations to you all. We look forward to seeing her at church.
Burnie & Judy
SO beautiful!
YEAH!!!!! Praise God that she is healthy and mommy is healthy! God bless your sweet family!!!
I am so glad she is here and you all are doing well. She is so precious! I can't wait to see her!
I do not know you... I came across your blog trying to find answers to my sons Surfactant Deficiency. I hope you don't mind me leaving you a comment, but I am reaching out for anything at this time. We had our little boy on September 4, 2008 (37 weeks 5 days). Healthy and Beautiful. He developed Respiratory Distress shortly after the C-Section and was placed in NICU. He was then transferred to 2 different hospitals. At first they thought he had just aspirated and got an infection which led to a pneumothorax, they thought once that healed we would be good. Well, here it is October 1st and we just recieved devistating news that our son has a RARE Genetic Surfactant Deficiency that is fatal. I was wondering, where you are involved with the March Of Dimes if you have heard of other families with this disorder or if the March of Dimes has support groups? Anything would be helpful. Please email me if you have any information of support groups with the March of Dimes. We feel so alone, like we are the only family out there with this rare disorder.
Thanks, for your time
ashley_larsen2@hotmail.com
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