February is National Children’s Dental Health Month, Low Vision Awareness Month, International Prenatal Infection Prevention Month, and Heart Health Month, and a few more, specifically Feb 7th through the 14th is Congentital Heart Defect Awareness week. Most of us are “aware” that it’s Heart Health Month more than we are about the other causes. How can we not know? It’s all over TV, billboards, the radio, internet adds: Heart Health Month: What Every Woman Should Know, Quiz: Test your own heart health knowledge, The ABCs of Heart Health, etc, etc, etc. We NEED these BIG Media campaigns for heart awareness. We NEED them because these campaigns offer crucial information that could help us save our mothers, our fathers, our grandparents, aunts, uncles, or even ourselves. What about our… children? WHAT? Children? Children are too young to worry about their hearts. “Heart problems” only happen to adults. What about YOUR NEWBORN BABY? Or YOUR UNBORN BABY? Anyone ever see a Big media campaign about CONGENITAL HEART DEFECTS? If you have, PLEASE share it with the World! Post it and repost it on your FB page, TWEET about it, Blog about it, text it, email it, shout it from a mountain top, “CONGENTIAL HEART DEFECTS ARE THE NUMBER ONE BIRTH DEFECT”! 1 in 100 babies are born with a heart defect from as least complex as a hole in the heart (or a few) to the most severe like Hypoplastic Left Heart Syndrome (or Hypoplastic Right Heart Syndrome, or more simply understood, “half a heart”.) I want you to share it for the same reason the American Heart Assoc. shares their essential facts; so that you can help save a life, yours or a loved… adult.  I, and the entire “Heart Mom/Parent” community want you to share OUR critical… stories, with the world. We NEED people to talk about us, to EVERYONE. Not enough people are talking about us. This  means not enough money is being raised to spread awareness, fund research efforts, or simply educate parents and future parents about the signs and symptoms of a congenital heart defect in your newborn baby, or what to ask at your 20 week ultrasound to ensure a potential prenatal diagnosis. Mostly, I WANT you to share because if someone had shared with me, Bronson’s HLHS would have been detected in utero and we would not had taken him home in heart failure.

I am personally convinced that Bronson’s CHD was discovered by my God given motherly instinct and by the will of the Lord because I absolutely was not “aware’. I am a “Googler”. I Googled all things pregnancy related to precautions and complications at delivery. I NEVER stumbled into anything about CHD in my frantic quest to be aware and prepared, or even reassured. Congenital Heart Defect was NEVER mentioned, talked about, no pamphlets in the waiting room, or ever considered during my prenatal care. My OBGYN was even thorough enough to rule out cleft palate. I was asked 5x by himself and even 3 different doctors  in his office if I wanted to test for Downs Syndrome. I even had 2 extra ultrasounds, one was a growth ultrasound because Bronson’s head measured 3 weeks ahead of my actual gestation. We proceeded through the pregnancy and June 2, 2011 we embraced our 8lb 6oz, feisty, fun, quirky little “kicker”.  Other than very mild jaundice, he looked healthy. He passed all of his newborn screenings. He just wouldn’t latch on long enough to breast feed. We were in the hospital 3 days and that entire time the nursing staff and lactation consultants worked diligently to get him to latch. By discharge, he was latching occasionaly and falling asleep while he was nursing. He lost more than 11% of his birth weight. We were sent home with direct orders to see his pediatrician immediately. The next morning we had a weight check at her office and he’d lost more weight. She examined him with awe at how beautiful he looked and then scheduled our next appointment to check his weight at the end of the week. She assured us that weight loss is normal for newborns. Those first two weeks at home were mentally and emotionally excruciating for us. He was always hungry. His latch was still weak and he was still falling alseep during nursing. He wouldn’t sleep more than 2 hours at a time because he was so hungry. His weight continued to decline. By the end of that second week, the day before his 3rd weight appointment, I heard a wheez in his breathing and his cry had become silent. That same night Eric and I took turns holding him through the night on the couch just to keep him calm long enough to sleep for an hour or a little more at a time. I felt it down in my soul that there was something critically wrong with him. I had no insight at all into what it could be, I just knew it with my intuition, and it hurt before I even knew what it was.  He was in critical heart failure. His lungs were wet, producing the wheez and muting his cry. It was confirmed at that third appointment to check weight, when I mentioned to the doctor that I heard him wheezing. She listened to his heart 3 times before she could convince herself that the murmur she was hearing was distinct enough to warrant a trip to the children’s ER. He was admitted weighing 7lbs.  She was in denial. I knew it by her reaction when she listened to his heart. It was the hand held pulse oximetery device for older children and adults that showed a consistent high 60% to 70% (it should be 95-100) oxygen saturation in his blood, that confirmed her conviction.

Why would any pediatrician be reluctant to acknowledge the most common birth defect responsible for more deaths than any other congenital defect? Bronson presented every sign and symptom. They were boldly affirming themselves to everyone involved, from the hospital staff to our doctor. Weak latch during nursing, sleeping through feeding, weight loss/inability to gain weight, too fussy to sleep, crying without producing any sound. He also had cold feet. We are not the only family who has blindly encountered CHD. It has devastated to0 many families with it’s silent fatality. Babies have been lost in the arms of their mothers at home without any warning. Teen athletes to adults have relinquished their lives on the sports fields to an undetected CHD

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. Yet, the mass media coverage for these tragedies are mostly absent. Regardless of the facts, there is sadly a significantly small amount of  funding available for medical research and prevention, education for the public, to outreach and services for families. Even celebrities who themselves have survived life saving interventional procedures and surgeries as children, or have children that are afflicted, remain questionably silent. This obvious lack of awareness ignites a burning passion in the souls of all heart moms to declare action. While we are many and tightly knit with some powerful mom’s working diligently with their entities, we don’t have access to the outlets we need to successfully reach the public to the extent that organizations like the American Heart Assoc has. We have facebook, Twitter, email, and blogs. We are using them as effectively as we can. It’s not spreading fast enough, wide nor deep enough, which is why WE NEED YOU! We need YOU to use YOUR Facebook, YOUR Twitter, Your email, Your Blog, Your celebrity acquaintance, media relation, to tell OUR stories, to tell Bronson’s story. Tell his story to an expecting mother. Educate her about asking at her 20 week ultrasound if all four chambers of her baby’s heart are visible, if they focused in to view all of the arteries, if the stomach and heart are in the correct position, if the heart rate and function are normal? Tell her to ask for a Pulse Oximetery screening for her child before she leaves the hospital. Google more about Congenital Heart Defects and seek information about organ donation. Finally, talk to ME about CHD. Ask me more about Bronson’s journey. I want to share everything I know! I want the world to know about the most prevalant killer of children, 2x more deadly than all childhood cancers combined. Be Aware and remember the signs and symptoms that Bronson revealed, so if you see them in your own or another newborn baby, you can SAVE A LIFE!

Below is a picture timeline of Bronson from his birth to before and after both surgeries to current.