Friday, October 16, 2015

October 16 - Dear Nicholas Sparks (Guest Blogger Brigette Tophen)

Dear Mr. Sparks

I am writing this letter to share our story with our daughter's CDH in the hope that you will be able to provide awareness through your writings.  CDH occurs on the same average as Spina Bifida and Cystic Fibrosis yet there is nowhere near the research alloted to CDH as to the two others.  This is our story.

Our daughter was born in June 1990 in Toronto, Ontario, Canada.  Within a minute of her birth, she started turning blue.  My husband was witness to this but I did not see.  She was rushed away with the nurse performing mouth to mouth.  To understand the severity of her care you need to know that I delivered on the 1st floor of the hospital and the NICU was on the 4th floor.  To this day, I do not know how the nurse got there.  I do know that she lost close to 4 minutes of oxygen.
It would be two or more hours before my husband and I were to learn of her condition.  We learned that she was born with Congenital Diaphtagmatic Hernia on the left side.  Her stomach, intestines and part of her bowel were in the cavity of her left lung.  Her left lung was the size of a pea pod and her heart was pushed to the right side of her chest.  

We had named our daughter Jessica and now the doctors were telling us that she had only a 50/50 chance of survival.  As hard as everthing was to hear, it made less sense to me as her mother as she weighed 8lb, 9oz.  We were told that if I had not had her at the hospital were she was born, she would have died.  God was with us this day.

Jessica was transferred to the Hospital for Sick Children in Toronto where she was operated on when she was 44hrs old.  She spent 22 days in hospital snd then came home with no medical intervention required.  I did  not realise then just how lucky she was to survive, but I do now. 

There was no support groups available then and Jessica was 23 when I found Cherubs.  It helped to know we were not alone.  It was disconcerting to know that in all the years since her birth that no further medical strides had been made.  Parents should not still be given 50/50% odds for their child's survival in the 21st century.  More research is needed and through your writing, you have the medium in which to help.  

Will you please help? 

Thank you from Jessica and our family for your consideration.
Brigette Tophen

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