I preferred to remain anonymous and research CDH myself through hospital websites and professional peer reviewed research articles. I never considered reading someone else's personal account a reliable resource. I was so wrong to underestimate the value of this resource!
I'm thankful that my dear friend found one family's story online and passed it along to me. Their story gave me so much hope for our baby. And when you've been sifting tirelessly through research and statistics, hope is one thing you are desperately in need of.
A word about personal blogs...
Many personal informational sites, such as personal blogs will not contain 100% accurate medical information. Please be cautious and keep this in mind. However, their personal stories as parents are very real and can be very helpful to other CDH families.
The family's story we began following provided a very medically accurate account of what they went through with their son. It helped me so much to see pictures and videos of what was happening with him, much of which would also happen with Sofie. No two stories are the same. No two babies have the same course or outcome, but many of the experiences will be very similar. And while not everyone can or will write accurate details from a medical standpoint, the emotional experience will always be true.
From this one family, I learned of a support group and found many other families I could also identify with. I am now a member of several support groups and have become close with some of these families. Never underestimate the value of support you can receive from another parent who has walked your walk. At times they can be your very best resource!
