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,
Hope Clyde
Mother of Tyler Clyde, 13 year old CDH survivor.
No comments:
Post a Comment