Daily Living with a CHD

August 17, 2009 at 10:47 pm Leave a comment

I should start this post with a disclaimer….in fact I think this disclaimer should be a DISCLAIMER. All CHD’s are different.  My daughter’s Tetralogy of Fallot is very different from Hypoplastic Left Heart Syndrome.  And, each case of CHD is unique in itself.  Having said that, I wanted to look at how CHD has changed my life and the life of my daughter and family.  Beyond the obvious huge life altering way the disease affects, everyday living is a bit different for us.  My daughter had her surgery at 5-months-old.  Her pulmonary valve still leaks drastically and she will be facing another open heart surgery next year.  So, she still has heart issues and precautions.  Here are the ways off the top of my head that our lives are different because of her Tetralogy.

  • I am a verified germaphobe.  Not in the usual sense where dirt bothers me and dirty hands are beyond reproach.  No, the real germs and bacteria that live and grow on things unseen to the naked eye.  I worry about drinking fountains, public restrooms, doctor’s office pens and door handles.  I worry about all the kids at my daughter’s school and what germs they are carrying around.  I know it sounds funny, but for us, the wrong bacteria can be serious.  Strep throat is something that we can’t mess around with.  If the infection gets into Abby’s bloodstream, her heart surgery would need to be redone to replace the infected patches.  Chicken Pox could kill her as well as the flu.  So, I have to be aware.  I can’t keep her from every bug out there but we go to the doctor at the first sign of a sickness.  We don’t wait it out.  We get her checked and get her on antibiotics if need be as soon as possible.  We also get the flu shot every year!!  The whole family!!  Abby’s little brothers complain but, we do it for her.
  • Dehydration usually means a hospital stay.  Abby’s heart can’t handle dehydration.  She gets chest pains and her heart races.  We have learned from experience that it is better to keep Abby hydrated.  During the summer I don’t send her anywhere without a water bottle.  She also takes a water bottle to school.  We don’t like to go the hospital for IV hydration.
  • Abby is tiny.  This could be due to genetics.  It could be due to her genetic scoliosis.  But, we have to give some credit to her heart defect.  She is nine-years-old and fits loosely into a 7 slim.  She weighs around 40 pounds and is shorter than her six-year-old brother.  This has been emotionally hard for Abby.  She hated it when her friends picked her up and carried her around.   She always gets little nicknames from them like “tiny woman” or “littles”.  She bears it well but it is an emotional issue that we deal with often.
  • Sports are a no go.  It isn’t that Abby can’t play sports.  She just doesn’t have the stamina for them.  Her friends run circles around her and she get frustrated when attempting to keep up.  She is always “it” in tag and she doesn’t have the physical ability to play hard and long.  This can be frustrating to Abby.  Lots of kids with Tetralogy who don’t have leaky valves don’t have exercise intolerance after surgery.  Those who have regurgitation often have hard times with sports.  That is okay for Abby though…she has found other interests in the piano and singing.
  • Emotionally life has been sweeter.  I know it sounds strange that a CHD would make life better.  I do know that this CHD in our first child brought my husband and I together.  It cemented our relationship.  I look at my daughter and am reminded of what a blessing each day is with her.  Those feelings carry over into my other three children as well.  I have learned what faith means.  I have grown closer to my Savior and his Divine love and Divine wisdom.  The spirit in our home is a little sweeter.  Reflection time is a little more often and my love for my children and husband is shown more openly and given freely daily.

I have always loved the quote by Samuel Taylor Coleridge “What comes from the heart goes to the heart.”  I understand that quote so much now and on so many deeper levels.  I have learned a lot because of CHD and like nearly all CHD families I know, life is somehow more meaningful and every moment is sweeter because life is also fragile and fleeting.

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