Dear Nicholas Sparks,
I want to share with you a story about how our journey with Congenital Diaphragmatic Hernia started. The contents in this letter changed my life forever.
It was Sept. 28, 2001. The day before our daughter's 2nd birthday. We had just done a follow up ultra sound on our second pregnancy. I was 22 weeks along. I got a call from our doctor and long time friend. He said he needed to see me and my husband today about the results of our ultra sound. I thought it was unusual, but didn't give it more thought.
We went in to see our beloved doctor and I could instantly feel a heaviness in his behavior that I had not experienced before. He said words to us that will forever change our lives. He said, "I hate to give this news to anyone, but especially someone I like. Your baby didn't develop right. There are some problems and you will need to go to Salt Lake City to see a high risk pregnancy specialist...." Salt Lake City, UT is 320 miles from our town, a 4 1/2 hour drive. I thought our doctor meant that our next appointment in a month would be in Salt Lake. "No, Hope. You have an appointment on Monday at 9am". This was Friday afternoon! That's when I realized our lives would never be the same.
Monday morning we entered into this high risk pregnancy specialist's office and my breath was taken away instantly. There were pictures of "sick" babies on all the walls. Why was I here? There must be some mistake. There was no mistake. We were given the awful news that our unborn child has a birth defect called Congenital Diaphragmatic Hernia, or CDH. The specialist went through the statistics with us:
*this happens 1/2,500 births
*there's only a 50% chance of survival
*IF the baby survives, they will need life saving surgery at about 1 week old
*expect a 4-6 month stay in the NICU
*expect a lifetime of feeding problems, lung problems and possibly life threatening medical problems
He went on and on. He sounded like Charlie Brown's teacher mumbling. I was frantically taking notes in my notebook that our doctor suggested we take. We were writing down medical terms that the specialist had to spell out for us. He did an ultra sound in his office and explained everything to us. He asked us about terminating the pregnancy. We couldn't even think of terminating this pregnancy but to say we were overwhelmed is an understatement. We made plans for our next appointment in a month and figured out when we would need to move to Salt Lake to have the baby.
My life now had 2 parts: before CDH and after CDH.
As we left his office that day, he said to us, "go home and Google CHERUBS, as in angels, CHERUBS. Write it down. That's where you will want to get any and all information CDH related. CHERUBS is at the top of their game. They are the best. You wont need to go anywhere else for information." We are so grateful that he sent us to CHERUBS. We were never alone because of CHERUBS.
The reason I am writing you this letter and others in the future is in hopes that you can help me along with CHERUBS to raise awareness of CDH. The birth defect that rocked my world 14 years ago continues to devastate families to this day. Please help us raise awareness so we can raise money to continue searching for a cause.
CDH didn't take my son's life YET, but he will never be "out of the woods".
Thank you for your time,
Mother of Tyler Clyde, 13 year old CDH survivor.