Congenital Heart Defect Awareness Week
February 7-14, 2014
CHD Awareness Week means a lot of different things to us Heart Moms. I think so many of us who end up being heart moms remember all too well that up until our diagnosis we literally knew NOTHING about congenital heart defects.
We sure as hell didn't know they were the #1 birth defect.
We definitely didn't know that 1 in 100 kids has a CHD or that one is born every 15 minutes.
Or that over half of them will required to have at least one invasive surgery.
Or that twice as many kids die from CHD's than all childhood cancers combined.
Or that over half of SIDS deaths are estimated to be caused by an undiagnosed CHD.
Definitely did not realize that only 1 penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
That research to cure something so common and so deadly could be so underfunded.
That Haven's single ventricle anatomy is not a cure but a place holder for how long we'll never know.
Never in a million years did I think I could be that 1 in 100. Or in Haven's case (with her specific diagnosis of Pulmonary Atresia with Intact Ventricular Septum) which happens roughly 4-6 times out of every 100,000 live births. What the hell? Seriously?
Becoming a heart mom on October 23, 2009 changed the direction, the perspective, and the world view of my live...forever. CHD Awareness Week doesn't just matter to me, to my daughter, to my family or friends or my other heart mom friends and their kids. It should matter to everyone because people simply have no idea how common it is. It's important that people KNOW about it. The numbers are just to great not to know.
Please...
Raise awareness, know the warning signs, donate to the Children's Heart Foundation which is solely dedicated to pediatric CHD research, or donate directly to a hospital working hard to advance research in this area, pioneers like the Boston Children's Hospital Heart Center (where Haven has undergone her three open heart surgeries) who could really use the funds for the amazing work they are doing to improve the lives of children living with CHD.
Some reflections from fellow heart moms on the Unexpectant.com on why our journey matters:
“I never knew what CHD was or that it even existed, until I found out at 23 weeks of my pregnancy. I was told my son was going to have open-heart surgery at five days old—OPEN-HEART SURGERY!—and that he was going to have another one at six months old and then another one at two years old. I carry his heart in mine now and I represent him.” –Sonia R.
“Every time surgery comes, it takes everything you have to stay strong and remain standing because all you want to do is fall apart, but there isn’t time. You watch your precious child struggle through unimaginable struggle, which no adult could survive, and yet somehow they do. And then your worst nightmare becomes your new reality. Your child loses their fight.” –Sandra F.K.
“Being a heart mom means we are never off, although I know no mom really is ever off. But we look at our child and study every little detail and the tiniest of changes or differences with the eyes of a very seasoned detective. We are often waiting for the other shoe to drop, because it often does…many times. We know our child’s medical history better than any of our doctors. We know what to pack for hospital stays. We bond instantly with other heart moms. We often feel alone…especially at the beginning. Only other heart moms know how we feel. Our partners and parents can be awesome, but only other moms truly get what it is to know your baby or child’s heart is not healthy. We worry about insurance and medical bills, but don’t ever think of not doing something because of getting into more debt. We know more medical terminology than first year med students.” –Kristin B.R.
“We offer to help other heart moms, we want to share our story and help moms get through their journey. We get angry, sad and so scared, but we turn all that off when our child is in the room and dance for them if it will help. Some of us carry our babies into the operating room, hold our babe while they are sedated, and then kiss our baby and leave the room all without missing a beat….then we lean against the wall outside that room in our silly paper OR uniform and shake from our sobbing. We are strong, but no stronger than anyone else…we just do what we have to do. We hold our toddlers down, while they are poked and prodded, and sing silly songs, while our hearts ache for our child.” –Kristin B.R.
Being a heart mom means preparing yourself to pick up and head to the children’s hospital at the drop of a dime, never knowing when that moment will strike or what the future holds. Being a heart mom means driving hours to the hospital for scheduled appointments, labs, procedures and surgeries, and sometimes staying there for days. Being a heart mom means knowing one day you’ll have to tell your child they can’t play sports, their immune system is weak, they may never bear children, they have to have major surgery and that they are very sick. Being a heart mom means sometimes feeling very alone. Feeling like no one can relate. Feeling like you must put on your “strong face,” a mask of smiles. For many heart moms, it means loss; planning a funeral-a burial site, a tiny casket, a headstone, a burial outfit, planning a speaker, music and more. Being a heart mom means to forever try to make a difference, for the sake of our child.
For all heart moms, our lives change forever….
BE AWARE ~ SPREAD THE WORD
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