Dear Nicholas Sparks,
I wanted to write you a letter about something that a lot of people don't talk about. Today I wanted to share with you how I felt when I got pregnant after having a baby with Congenital Diaphragmatic Hernia, CDH. I hope you have taken a few minutes to research CDH and know how seriously ill these babies are.
When my son was born with CDH, it was extremely traumatic for our family. We had a 2 year old daughter when we had Tyler. When he was born, the medical interventions used to keep him alive were very hard for us to see him go through. IVs, PICC lines, feeding tubes, ventilators, highly advanced machines keeping my newborn alive. The sounds of the ventilator and monitors, the smell of the anti biotics, the feel of him swollen up on meds to save his life, all of this was very hard for a mother to see.
Well, we got to bring Tyler home. He survived! He was on oxygen for 11 months. Constant doctor visits, loads of medicines, carrying around all the machines to keep him alive. That first year was the hardest year of my life. I weighed his equipment and car seat one day, without Tyler, his "stuff" weighed 75 pounds. Nothing was easy. It was awful but I was so grateful that my son lived!
As the years went by, we considered having more children but I just couldn't do it. All I could imagine was having another "sick" baby! I couldn't do it again. I barely survived it once! Well, one day, 4 years later, my period was late. How could this happen? We were preventing another pregnancy from happening! I COULD NOT HANDLE THIS. I went in to the the doctor for blood work and it confirmed my pregnancy.
How was I going to get through this? My mind was spinning. I couldn't talk. I couldn't walk. I couldn't BREATHE! What if I have another baby with CDH? It is possible! I was having flashbacks of our NICU stay, all the medicines, the surgeries, the feeding issues, traveling across the state for doctor appointments, the financial stress, the stress on my body, the toll it took on my family........ How will I survive?
Every day, every minute, I was in total panic. Early ultra sounds showed no sign of CDH in this baby, but CDH can be late presenting. The fear and horror of another baby with CDH was relentless. I vividly remember that I was 6 months into my pregnancy before I found peace. SIX MONTHS! Somehow, I came to peace with the fact that I can't change it if this child had CDH, but I could react different than I was. I had to.
The good news is that we had a healthy baby girl with no problems at all. That pregnancy was such a dark time for me. I was completely out of control with fear and anxiety. We ended up having one more daughter after that pregnancy. That brings our total to 3 girls and 1 boy.
CDH rocked my life and continues to do so when I least expect it. Please help me raise awareness of CDH. With your help, we can change the world.
Thank you for your time,
Mother of Tyler Clyde, 13 year old CDH survivor.