Normality Defined ~ Momma's Heart Hero

During the cooler months of the year my son appears “normal.”  Society sees a typical high school student, a 16-year-old wearing Vans and carrying a string sack loaded down with electronics, power cords, chewing gum, and various other (evidently) necessary items to survive a day in high school.

Matthew plays alto sax in the high school marching band, played JV lacrosse this spring, and is socially active – ‘normal’ by society’s standards.

Winter turns to spring.  Spring turns to summer.  Swim team and lifeguarding replace lacrosse and marching band.  The not-so-normal becomes obvious as hoodies are replaced with tank tops. 

His “zipper” is easily noticed by the families around us as he coats it with sunblock poolside.  Inquisitive looks are soon replaced by questions and a chance for us to educate these inquiring minds about Congenital Heart Defects (CHD). 

If I may, let me take a moment to set the stage for you. 

Matthew takes off his shirt at the pool.  After a few minutes someone notices his “zipper.”  That person nudges the person next them, turns their back to us and notifies their friend that the boy wearing the purple swim briefs has a scar all the way down his chest.  Person two looks over person one’s shoulder and does a double take.  They briefly confer regarding what could have happened to this young man all the while whispering that the scar looks like the one grandpa Jones had after his bypass surgery.

This scenario inevitably repeats itself several times before a parent gets brave enough to strike up an unrelated conversation with one of us that will, within three or four minutes, casually turn to a question regarding Matthew’s ‘zipper’.

We explain that he was born with a CHD, Tetralogy of Fallot, as well as a couple of other CHDs.

  • Yes, he had open heart surgery.
  • Yes, it is a relatively new scar; his most recent surgery was in November.
  • No, it wasn’t his first.  We hope and pray that it will be his last but there are no guarantees.
  • Yes, it is a lot for a young man to go through.
  • Believe it or not he is not unique.
  • Seriously.
  • The most recent statistics from The Children’s Heart Foundation and Mended Little Hearts state that 1 in every 110 children are born with a CHD.
  • He is the first child with a CHD you ever met?
  • Yes, that is what happened to that –insert sporting event- young person last month; sadly, their CHD was never diagnosed and they died on the ___ field.
  • We were blessed with a great pediatrician; he heard a murmur when Matthew was three days old and sent us to a fabulous cardiologist.
  • Yes, he will have to see a cardiologist that specializes in CHDs for the rest of his life.
  • Please, if you know someone that is pregnant make sure they insist on pulse oximetry screening for their newborn.
  • No, it doesn’t hurt.  It is like having a bandage on a finger and toe.
  • It measures the oxygen supply in the blood.
  • I can give you a website where you can learn more if you give me your email address.

This entire conversation goes on while they are now obviously looking at Matthew’s scars and, often times, motioning for person two to join them.  Matthew graciously points out where the four drain tubes were sutured in to his body and explains what tube or wire each still-shiny section of skin on his upper torso is from.  He lets them feel the sternal wires by pushing on his chest next to his well-healed incision.  They place their hand on his chest and feel his heartbeat, comparing it to their own.

Then, the real magic happens.  He encourages them to have babies screened for CHDs and to listen to their children when they say that are tired or don’t feel well.  He explains cyanosis and why his fingers, toes, and mouth would turn blue before surgery.  Some cry while others stand in disbelief.  “He has been through so much” and “He seems to be dealing with it well” are often heard once we answer all of their questions.

Physically and mentally he is beating CHD every day.  Every.  Single.  Day.  He doesn’t do it alone.  He has us, his parents, pushing him toward “normal” every day – toward his normal.  He has siblings and extended family praying for him and encouraging him.  The best encouragement to push through the struggles, the pain, and the frustration?  His friends, their parents, the kids and parents at the pool and ball fields, and you.  Yes, you.  The strangers he knows are praying for him because you know someone who knows someone who heard about him from yet another person.  So, to you we say thank you. 

He is my heart warrior.  I am so proud of him for pushing through all of the pain and striving to exceed all of his goals.

He is my hero.  I watch as he, with more patience and maturity than most adults, explains the reality of CHDs to parents and children alike (his kid friendly version is so sweet.)  He is raising awareness.  Because he actively chooses to not sit inside hiding behind his birth defect, he is saving lives.  One day a young mom will request that a hospital perform pulse ox testing on her newborn and a CHD will be found.  That tiny little life will have a chance because Matthew educated a neighbor, grandparent, aunt or uncle about the dangers of undiagnosed Congenital Heart Defects.  He is my hero.

Then, Matthew walks away to take the lifeguard stand or swim an IM (I cried like a baby after he swam his first ever IM this year!)  Often the questions continue about limitations and if it is really safe for him to swim or have the younger kids wrestling with him.

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