When Ryder was born, I was so very unaware of Congenital Heart Defects and how common they were. Ryder was misdiagnosed with colic because she was fussy and wouldn’t eat. Come to find out, she wasn’t colicky at all- her heart was failing.
When the doctor first heard her murmur, even then it wasn’t treated like any big deal. He said most babies have murmurs. We went and had an EKG and chest xray done and I had to call about 20 times to find out what they saw. And I was told, “It can wait, its nothing major.”
On August 11, 2011, I finally had our cardiologist appointment. During that appointment we scheduled her first procedure for the next week. At that point I knew that even pediatricians are so very uneducated about congenital heart defects.
After a failed heart cath to open her Pulmonary Stenosis because it was actually helping her cause by restricting the blood flow caused by a large VSD (hole in the wall that separates the right and left ventricles of the heart), we were sent home on meds to try and help the hole close on its own. We tried to be hopeful, though we knew the chances weren’t good.
At Ryder’s 2 month well baby check up, Ryder hadn’t gained any weight, was a blue-ish hue, and was struggling to eat and breath with all her might. She got her shots, the doctor said it wasn’t a big deal to wait to see the cardiologist the next week and we were on our way.
I knew with everything in me that something was very wrong. I called the pediatrician several times over two days and was told to just wait. Maybe she had a virus, maybe she’s just having a bad reaction to shots, maybe….
I finally called the cardiologist myself and she rushed me in the next morning. Immediately she knew that Ryder’s heart was failing and we needed to do open heart surgery to repair multiple holes (ASDs), the VSD, and the Pulmonary Stenosis.
Ryder is 6 1/2 months old, and doing wonderfully. We had some major setbacks in feeding and finally found that she has a protein allergy on top of her acid reflux. The past two weeks have been amazing. She is her happy self ALL the time now, instead of only some of the time because of pain. We are so thankful to our mighty God for placing Dr. Pearse (cardiologist) and Dr. Mendeloff (surgeon) in our lives to help save Ryder. I’m so thankful for each nurse (even that ONE who was a jerk to me once and the other ONE who decided to tell me “you’ll be fine, I lost a kid once” and sent me into a panic attack). And I’m so thankful to my wonderful family and friends who helped me through that time and prayed so hard for us.
Did you know that CHD’s are the number one birth defect? Did you know that 1 in 100 babies are born with CHD’s?
I didn’t either.
How is it that the number one birth defect is so unknown? How is it that I hear things about autism, ADHD, etc, but NOTHING about Congenital Heart Defects when THEY are the #1 defect?! (Don’t get me wrong, I think awareness is very important for all syndromes, diseases, etc.)
Well let’s end that!
A blogger named Ruth has decided that she is going to change this by joining up with other moms for a Pinterest Awareness Challenge for CHD Awareness. One of the things that helped me so much (I mean SO MUCH) during the darkest days not knowing what to expect or what the outcome would be with Ryder was other heart moms who reached out to me. Becca, Hannah, Beth, Rachel, the list goes on. That’s why I am so excited to join in with these other moms and parents to help raise awareness and also meet new friends who have been through this as I have so we can encourage each other and lift each other up in prayer.
Knowledge is power. And parents should hold the power for their children, just in case medical professionals fail us. They are human too, and it does happen. Let’s get educated! Please join us on Pinterest to raise awareness for our sweet heart babies.