Welcome to the first day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out yesterday's post.
Today's post comes from Kelly
The Story – Chloe June
After hearing horrible birthing stories from friends and strangers, I admit I was nervous for the big day. But the day Chloe was born was perfect as well! After only five hours of labor and three pushes, I was crying and laughing at the same time!
When I got to my room, I buzzed the nurse and asked where Chloe was. She came in and said that they do think something is wrong with Chloe but do not know any details yet. She would keep me posted.
Throughout Chloe’s first six months, all I did on my down time was CHD research (I still do). I wanted to learn everything I possibly could about CHD. I had so many questions. What did I do wrong in my pregnancy? Why did this happen? Will it happen in our next pregnancy? Will she need more surgeries when she gets older? Will she be able to play sports? Will her babies be born with CHD?
I had never heard of CHD before Chloe, let alone knew anyone else who was affected by it. I felt so uninformed and useless, unable to help my daughter. I know I couldn’t have prevented it, but I may have felt better if we were prepared in advance. I doubt it would have been less scary, but I’d like to think I would have handled those first few moments better.
I read somewhere that the majority of heart defects go undetected in pregnancy. I thought of all of the families after me, going through the same shock I did, discovering their child has a CHD. I remember feeling so unorganized during Chloe’s first two weeks in the NICU. I did a lot of research online, in the midnight hours before heading back to the hospital for our 13 hour days. I remember having to go to many different websites to get information. That’s why I decided to create my blog, CHD Babies. I wanted a “one-stop-shop” for new and existing heart families to go to and read all about CHD.
I definitely don’t claim to have everything about CHD on my website! But I do try very hard to put as much info on there as possible, from CHD statistics, definitions and heart medications to miscellaneous CHD research and details on what to expect during your child’s open heart surgery.
There are many different CHD blogs out there making a difference! I think each one is wonderful and unique and we are all fighting for the same thing – raising CHD Awareness!
On February 14, CHD Awareness Day, I will have the great opportunity to be interviewed by a local Fox News reporter about Chloe’s heart defect! I hope this will help raise awareness to others that do not know about CHD, like me…before Chloe was born.
I later learned that Pulse Oximetry Screenings are not mandatory on newborns. They are only done when a baby is showing signs or symptoms that something is wrong.
I believe the Pulse Oximetry Screening should be mandatory on all newborns. It’s preferable that the test be done after the first 24 hours of birth (to lower the risk of a false positive) but before discharge from the health care facility. False positives may be scary, and additional tests may be done to rule out a heart defect, but I’d rather be safe than sorry.
I know the Pulse Oximetry Screening won’t detect all CHDs, but it will detect some, and that’s a first step to saving lives.
If you live in Missouri, or know someone who does, please help get Chloe’s Law passed. Chloe’s Law is a bill that would amend the current newborn screening requirements to include Pulse Oximetry Screening on all newborns before leaving the health care facility. I submitted this bill to my local House Representative in August 2009 and he supports it. Now we need other house members to support it as well. Please write your local Missouri House Representative and ask him to support Chloe’s Law, Bill Number 1604. For more info, go to http://chdbabies.blogspot.com/2009/08/if-you-live-in-missouri-please-help.html