CHD awareness week: The teen years!

The Teen Years With a Heart Warrior

It started nearly 15 years ago, before he was even born, that we learned first hand about CHD’s.   Pregnant with our second son, we learned at 22 weeks gestation that he would be born with a complex heart defect called Hypoplastic Left Heart Syndrome (HLHS).  We were told we had 3 options: 1) transplant; 2) 3 staged surgical repair or 3) comfort care.  Even though we were at 22 weeks, we were even offered and almost urged to terminate the pregnancy.  Neither comfort care or termination was ever an option. After the shock wore off, we threw ourselves deep into research and reaching out to others who had been down the same road.  Unfortunately, at that time, there was no FaceBook so support came in forms of e-mails back and forth with a handful of success stories online.  

After countless hours of research and second opinions, Jarod was born on 6/2/98.  He underwent the Norwood at 2 days old, the hemi-Fontan at 6 months old and the Fontan at 2 years old ( the second and third surgeries by Dr. Norwood himself). 

While these early years were rough and extremely stressful, we did have another healthy son, JW,  to raise and watch grow.  He was and has been such an amazing big brother and always there to help out when needed.  There were many times where I had feelings of sadness for the normalcy he was missing out on as well as the change in our family life.   While JW has never once complained, he has sacrificed a lot.  Through all 3 surgeries, there was only one complication, an infection, landing us in the hospital for 6 weeks on antibiotics and out of state no less.  I missed JW’s kindergarten orientation and his first lost tooth but had to be with Jarod during this critical time.  Oh how I wished I could be in two places at once but always looked forward to the weekends when they would come to visit in Delaware.

Fast forward 11 years and all of the sudden, Jarod is a teenager, YIKES. Not only did I have one teenager, but two teenagers, and boys at that!   In actuality, the teen years with boys have been much easier than the early years.  Honestly, after Jarod’s repair was “complete”, life in general became much easier.  In addition to his HLHS, Jarod also has cerebral palsy, asthma, and thyroiditis.  
As far as meds go, we used to just crush his meds up and put in applesauce, him none the wiser. It wouldn’t be long before we realized this was a mistake.  There was one particular hospital stay when the nurse was going over meds with me and Jarod said “I don’t take any meds!” and there it was… I got that “look” from the nurse, that look I am sure many of you heart mama’s can relate to, that look you get like you literally have 3 heads and you feel the urge to look behind you to see who said nurse is looking at, yeah…that’s the look.  It was at that time, I made the decision to make him his own advocate. It wasn’t long before he would learn what each med is for, when it is to be taken and what it looks like.  His current meds are Lisinopril 10 mg daily, Singulair 10 mg daily, Synthroid 112 mcg daily, baby aspirin daily, Flovent 110 mcg inhaler twice daily, multivitamin daily, ProAir inhaler as needed and DuoNeb nebs as needed.  This is quite the list and I only list them here because Jarod can recite this list correctly and explain why he takes each one.  This is actually very important when your child is old enough.  I know how hard it is to leave our kids even for a few minutes in a hospital but, if we raise them to advocate for themselves, I personally think it makes the road ahead a little less worrisome as they grow into adulthood.  Because Jarod knows what the pill should look like, he checks before taking it and has questioned many nurses if a pill looks different (usually because it is made by a different manufacturer) and then will ask me if it is okay to take.  There was one hospital stay when he was less than a year old where I caught a “different looking pill” and asked them what it was.  The nurse tried to tell me it was his aspirin (at the time he was on a 1/4 of an 81 mg tab) but I was not comfortable so I made her check with pharmacy.  It turns out, the pill she tried to give was a 325 mg aspirin!  Another instance was at the pharmacy: I had a refill and Jarod had a refill.  When I got home, I checked the meds and my migraine medicine was in his lisinopril bottle, his lisinopril in my bottle.  While I work in healthcare and know to check, I shudder at the thought of the families that are unable to advocate for themselves.  I am a firm believe that as soon as you are able to teach your child about his or her medications, the better advocate your child will be.

As far as living with a teen CHDer, and Jarod is only 14 1/2 so we are learning as we go, I really don’t see a lot of difference between my boys.  Jarod moans and groans about chores, doesn’t like homework and watches too much TV.  He talks back and rolls his eyes too!  From the beginning, as difficult a road as we have traveled, we have tried our best to maintain a normal family life.  I took off from work 3 months after Jarod was born and have remained full time throughout the years, taking time off with each surgery and hospitalization.  Jarod goes to regular school, is an active Boy Scout and loves to ride the Harley.  He is living and loving his life but does on occasion ask “why me?” or “why doesn’t so and so have a heart problem”?.   I have always responded to Jarod that he was made with a very special heart and because of his special heart, he is my brave and strong hero.  Here lately, as we prepare for a big surgery this summer at CHOP, he is becoming very anxious and full of questions.  We have always been as open and honest as we can when it comes to Jarod’s health and heart issues. It has been over 12 years since his last open heart surgery so he doesn’t remember them at all.  This time, we are headed into uncharted territory with a risky aortic valve/root replacement.  The main questions he asks are always “will I be asleep” and “will you be there with me?”.   Of course, these are easy questions and every time we answer, he is content knowing we will be there with him.  There was a particular evening, not very long ago, that he was talking about life in general.  We were sitting at the dinner table and he said “it’s okay, when it’s my time to go, it’s my time to go”.  Obviously, this was something I was not ready to hear and as tears streamed down my face, I had to excuse myself so I could regain my composure.  While I remember the early years being hard, the fear and anxiety, the surgeries and the what if’s, the teen years have been so much easier with the exception of the questions and serious discussions.  We have always lived this journey with a day by day mentality and are doing well.  We allow Jarod to do what he is comfortable with and he lets us know when he is tired or not feeling well.   

I hope I have been able to offer a little bit of insight and a lot more hope for you and your warriors.  Our journey is an open book and I am willing to answer any questions you might have.  I am here on Facebook to offer support but am usually sitting back, offering support where I can.  A lot of times I forget that when things are going good, I should share so that the good times help another parent feel that the hope is there.  Thank you for taking the time to learn a little about our heart hero’s journey with HLHS <3