February is “heart month” as many refer to it. The week of February 7th through the 14th is listed as Congenital Heart Defect Awareness Week even, but yet so many people fail to understand what that means, fail to comprehend what a child with such a diagnosis goes through, and further more the constant stress, fear, anger, and heartbreak these families go through each and every day of the year.
Children with congenital heart defects are more than just cute kids “rocking their scar” once a year in a feeble attempt to attract public attention to their diagnosis. They’re more than a heart with band-aids on it...they’re living, breathing, miracles one heartbeat at a time.
It is a life that is not for the faint of heart. It quite literally robs families of everything they’ve come to know and love...including extended family and friends as statistics show that unless you’re living through the battle or constantly immersed in it, you cannot even begin to fathom the complexity of maintaining consistency or routine for other children within the home, juggle medications and doctors appointments, and still remember to care for yourself.
The stress level in raising a child with complex medical conditions is equal to that of combat veterans, these families live each day with post-traumatic stress disorder in a way that not even the best television show can produce. Most days, parents survive through an “auto-pilot” mode just trying to get through the day five minutes at a time. Siblings are sometimes forgotten in the mix as there is just not enough energy or sanity to deal with a toddler’s tantrum after spending four hours on the phone with an insurance company.
The dynamics of a family are turned upside down overnight, marriages suffer ― even the most rock solid of marriages will still end up with some period of strife. The divorce rate is skyrocketing in families with children who have complex medical needs, some because of the financial burden, some because there just isn’t enough to keep them together anymore, some because it is a necessity to provide for their children. Despite all of this there is something much more soul-wrenching that congenital heart defects robs families of.
In the blink of an eye, congenital heart defects rob families of their children.
One minute you have a slightly fussy, nothing out of the normal baby with a congenital heart defect, who also has reflux and within minutes of them finally calming down they’re lethargic, and not breathing...just like that, they’ve died.
Resuscitation is next to impossible at this point, not because a family waits too long to call for emergency medical services, but because of the heart repairs, the types of shunts put in place, the already weakened heart muscles, the complexities of the more severe heart defects, and the shear fact it is always so sudden and unexpected. Their next photo isn’t taken in the mirror like always with mommy, but rather his mommy holding the outfit he died in, grief stricken and alone in the mirror.
Every year 1.35 million babies are diagnosed with a congenital heart defect, and in many cases their heart defect is not diagnosed until after delivery and the baby is struggling. 25% of these babies will require invasive procedures and even open-heart surgeries in order to even stand a chance at survival. Each year 1.35 million families are given a diagnosis that their child, if lucky to survive into adulthood, will have life-long health risks and concerns. There isn’t a single medication, treatment or surgery out there, despite all our gains in healthcare that will cure these children
As a result, approximately 182,500 children worldwide will die due to complications from their congenital heart defect. That is an astounding, crushing, and disgusting number to look at. 182,500 families each year will bury their child because research isn’t catching up to the pace necessary to create better medications, treatments, surgeries, or even preventative cures. Imagine if monies were funneled directly into such programs for children like they are for adults. Congress has passed legislation to fund nearly unlimited amounts of funds into studying the reproductive health and well-being of adults, but yet 4% is spent on pediatric cancer research. Do you know that research for congenital heart defects receives a fifth of what pediatric cancer research receives?
Less than 1 percent is spent on researching the number one birth-defect related death of children worldwide and yet our attention is more wrapped around which celebrity is dating who, or what new electronic is coming out. This is a problem, because no one care to even understand what a congenital heart defect is until their child is diagnosed with one.
This blog was originally posted on Gracie’s Gowns.