This week is Congenital Heart Defect awareness week. And while we know what caused Princess' heart condition, you can't help but bond with other Heart Families when you are seeing a pediatric cardiologist. As it stands right now, I personally know 2 Heart Mammas with Heart Babies. I have come to know others online through various other ways: blogs, support groups, etc. CHDs affect 1 in 100 children! And while surgery can repair a broken heart in a child, it isn't a cure. And while some children require heart transplants, it means a lifetime of medication and doctors visits for them.
So what can you do? Well, there are simple things:
- DONATE BLOOD: This is simple and easy to do. Anyone healthy over 18 and 110lbs can donate blood. It doesn't take long and they give you free cookies afterward! Many children with CHDs require blood transfusions. Princess almost did.
- ORGAN DONATION: While this may be a simple box to check on your driver's license, please don't take it lightly. Talk to your family about it. Let them know you are an organ donor. And if, by some chance, your child earns their angel wings at some point and their organs are healthy, please donate them. There are children who are waiting for a donation too. Organ donors can save many lives.
- PULSE OX MONITORING: This is SO SIMPLE. If you or someone you know is pregnant or just had a baby, tell them to ask for pulse ox monitoring. It's a simple, non-invasive test. Both my children were monitored after their birth. Princess, obviously, but Little Man was as well. He was born with the cord wrapped around his neck, so the hospital thought it was important to put him on the monitor. It can be the first indicator of a CHD.
- ECHOCARDIOGRAMS FOR SPORTS PHYSICALS: This one is near and dear to my heart. When Princess was first diagnosed with cardiomyopathy, I Googled it. And what came up were young people having heart attacks and dying on the sports fields. This is something that is easily preventable. Just ask that your child have an echocardiogram (ECG or heart echo) as part of their sports physicals. It is another non-invasive test. It's an ultrasound of your heart. One of my Heart Mamma friends just found out that her oldest has a CHD because the youngest was at his cardiology appointment and they were curious. It wasn't required as part of his sports physical and he's a wrestler.
- AWARENESS: This is why I'm doing this post. Whereas Princess will, hopefully, no longer have her left ventricular hypertrophy because it will be such a small part of her heart that is damaged, there are kids out there who will always have a heart defect. They will always have the scars of their heart defect. They will always have to take medication, see specialists, have tests and procedures done. CHDs affect 1 in 100 children.
So, while Princess doesn't have a true CHD, it was caused by her PHA2, we still are aware that 1 in 100 babies are born with congenital heart defects and many of those are preemies. Princess was a preemie and she very well could have had a hole in her heart. There were many babies in the NICU that did. So please hug your children tight today and make sure other parents out there know the simple things they can do to help their children. And while surgery will fix many CHDs, it isn't a cure. More research is needed to find out if there will be a cure. Lots of love today on Heart Day.