Did you know that over 40,000 babies are born with some sort of congenital heart defect every year?That’s a lot of babies, whose parents couldn’t have even begun to imagine such a thing would happen to their child.
Heart moms (and dads) go through so much and deal with so many struggles. When you first get a diagnosis of congenital heart disease, you have no clue what to do, or where to begin. Thoughts go through head, will my baby have to have surgery, or will it heal on its own, how do I find the best doctor to best take care of him/her, will they be able to do the same things as other kids? You also wonder about the other babies that have been diagnosed and what is their story? There are too many parents to count who lose their heart hero and usually in the first year. There are a lot of extra things heart parents go through with their heart hero than they would have with a typical baby. I had not a clue what being a heart mom meant. So for heart month I’d like to share some of THEIR stories, to try to bring awareness and celebrate our heart heroes and angels. Here are a few short stories from the amazingly strong heart heroes and their parents.
This is our daughter MacKynzi the day after she was born she was life flighted to children's for a possible bowel obstruction. Then ventilated right after arriving to children's hospital in Pittsburgh. At 4 days old we found out she has a double aorta and had to have heart surgery. She had the surgery at 10 days old. Her 1st birthday was a few days ago. Her last stay in children's her EKG came back irregular which the doctors thought could just be a miss read. However I told them that it came back the same way 6 months prior at a different hospital. So, we have an Echocardiogram coming up on the 26 and we're praying so hard everything comes back good! Having a child and watching that child go through so much stuff and not being able to take their suffering and pain away is one of the hardest things you can do. I just pray so hard at night that parents and kids/babies wouldn't have to go through this!
My baby boy Raiden was born at Magee where he was taken to ICU to test his kidney function. They discovered a heart murmur and did an Echo. We were told to follow up with CHP cardiology because they discovered a small ASD that would heal on its own over time. At his three day check up he lost a half pound. His pediatrician called Childrens to get us an appointment sooner. We discovered that he had 3 very large holes. We struggled with weight gain and keeping him healthy til 3 months old we decided to go ahead with a repair. After a 14 hour surgery and a month long hospital stay we now have a healthy 2 year old thanks to children Hospital pittsburgh!
This is my son Waylon. He was inpatient for 307 day’s battling Hypoplastic left heart and has had 2 surgery’s and counting. Just a couple months ago we were talking to the heart failure team because it seemed like we couldn’t move forward with his Glenn procedure but a miracle happened and swooped In when i thought I lost all hope..He is always amazing me even after hitting Rock bottom he yet again amazes me with his strength and courage to fight. We have now been home exactly a month today and has been exceeding all expectations from not knowing where we stood in this journey to thriving and now hitting milestones I never thought I’d witness. one strong heart warrior that will also be celebrating his first birthday February 15th
(You can read Waylon's full story HERE
These are just a few of the many heart heroes who go through similar experiences. It's not always easy telling their stories. These moms stepped up and told their stories so others could get a glimpse of what it's like going through a heart journey. While all their stories are different one thing remains the same, they are all strong (sometimes stronger than us!) and they are our heroes!
If you would like to help a heart hero through their journey after surgery you can read more about what we do by going to our home page or donate here
Check out the links below
The Rycker’s Heart Heroes Foundation along with other heart moms,dads,relatives,doctors,nurses, and those directly affected by CHD will be bringing you content,stories,and articles to help you the families or those interested cope with a hospital stay or CHD.