Growing Up with HLHS

During the National Pediatric Cardiology Quality Improvement Collaborative's 2013 Winter Learning Session in Cincinnati, Sisters by Heart Board Members had the opportunity to meet Diane Pickles, mom to Jake, a 19 year old living with HLHS.  Diane offers great insight as a veteran HLHS mom, and even greater, Jake's personal insights on growing up with HLHS.

Diane and Jake have graciously granted us permission to share their journey over the past 19 years.  And Jake, well, he's allowed us to share with our families, his college essay:

Jake and Diane Pickles

To look at me, you would never guess anything was wrong.  The truth is, however, that I have quite a story.  I look like an everyday high school student, but I’m really not.

I was prenatally diagnosed with Hypoplastic Left Heart Syndrome.  This means that while my mother was pregnant it was determined that I had only one of the heart’s two ventricles.  In layman’s terms, I have half a heart.  My parents were told that my odds of survival were quite low and if I did survive, I would have poor quality of life.  One doctor even told them to terminate the pregnancy.  My parents thankfully decided to have their second son.  They knew I would face obstacles in life, but they prayed I would be able to overcome them.  My supportive family welcomed me into the world on September 2, 1994.

I have had three open heart surgeries – the first at three days, the second at six months, and the third at two years.    While I don’t remember my operations, I have been told they required a lot of strength and courage to survive.  In addition to my surgeries, I have had four cardiac catheterizations, many tests and procedures, and more doctor visits than I could count.

Throughout my life, I have coped with frequent infections and chronic asthma.  I have had several hospitalizations and many trips to emergency rooms as a result.  Once while in the hospital, we did the math and determined that I have spent more than one hundred nights at Boston Children’s Hospital.  I get sick much more frequently than my peers.  I have been sick with obscurities such as swine flu (which required a week in the hospital and missing my 8th grade graduation), c-difficile, and erythema multi formae.  Most recently, I was hospitalized for a week   with pneumonia.

Due to these chronic illnesses, I have faced significant challenges academically.  I have missed large amounts of school, and I have also spent many days in school feeling quite ill.  When I return to school, I am lessons behind my classmates and struggle to catch up.   Early on, I missed a lot of the “basics” and important foundations which has caused challenges in subjects like math and English. Though I don’t dwell on them, I face non-academic day-to-day challenges as well.  My friends are very athletic where I am not which has made it difficult to keep up with them in sports and activities.  Many of them play organized sports like football and hockey which I am not able to play.  I get tired more easily than most teenagers which is a challenge at work and at school.

My personality has helped me overcome these obstacles, particularly my sense of humor and positive outlook.   I remind myself often that my challenges could be much worse.  I have seen what other cardiac kids experience, and I am thankful that my problems aren’t as severe.

I may have half a heart, but my life is full.

Sisters by Heart asked Jake's mom, Diane, an incredibly thoughtful and genuine individual, to share the HLHS journey from a parent perspective, from birth through teenage years.  She's given so many pearls of wisdom in this post and we're so thankful to Diane for sharing.

By Diane Pickles

There is so very much that I could share about the last 19 years of raising a child with HLHS.  Although Jake is not the oldest survivor, he is certainly on the oldest end of the survival spectrum.  I know that a great deal has changed in 19 years, though the most important aspect hasn’t, unfortunately, changed at all – it is still heartbreaking, exhausting, and frightening to have a child with HLHS.  But there’s one more incredibly important thing that also hasn’t changed – the love of a parent combined with the determination of these amazing kids can overcome all kinds of obstacles.

The first 2 years of Jake’s life are a total blur.  Somehow, we moved through the chaos and stress and got to the other side.  And what I found on the other side, particularly as Jake reached school age, was a challenging transition -- from medical management of HLHS to emotional, social and developmental management – on top of the medical issues.  It has been the part of our journey that has challenged me the most.  I’m not saying that getting through Jake’s surgeries was easy – because God knows as do each and every one of you that it was incredibly difficult.  Nor has it been easy to deal with frequent infections, severe asthma, emergency room visits, ambulance rides, and admissions from the age of 2 onward.  But the non-medical “stuff” that has gone along with Jake’s disease was, in many ways, much more difficult.  It was certainly not easy to watch our child in physical pain – but most of the time, there was medication that could be administered to ease that kind of pain.  Other types of pain were much, much harder. 

Jake desperately wanted to play baseball, but the coach wouldn’t play him because he was slow around the bases and not as strong as his peers.  He struggled mightily to keep up in school given learning issues, compounded by frequent illnesses, and had more than one teacher call him lazy.  Doctors constantly told our one time failure to thrive child that he needed to lose weight.  Jake missed many special events, parties, and graduations.  Each of these things made him sad, frustrated and angry.  I worried about his self-esteem, his report cards, his morale, and his social life.  Sometimes I still do.

There are no prescribed treatments for these situations.  And they are difficult.  Challenging.  Sad.   You struggle to prop your child up while feeling heartbroken yourself.  What I think is essential, and what I tried to do through each of these struggles, was to acknowledging Jake’s frustrations without allowing him to wallow in self-pity.  I’ve tried to strike a balance between acknowledging that things may be harder than others for him while pushing him to do his best.  Sometimes that was much easier than others.  We have tried to raise Jake with courage, grace, dignity, and optimism.  When you live with a life-threatening disease like HLHS, there are likely to be non-physical challenges that go along with the disease.  For some, they are academic; for others they are emotional; for others they are developmental; and for still others they are social.  Sure, lots of kids without HLHS face these kinds of struggles as well.  But I think that for a child living with a disease like HLHS the childhood, adolescent, and teenage struggles are frequently filled with these kinds of struggles.  And when you’re dealing with that in addition to a serious medical condition, it’s a lot on the plate.

Like each of you, I grieved when Jake was diagnosed and through each of his surgeries.  I had to grieve the loss of a normal, healthy infancy and childhood for our second son.  And each time I have seen Jake feel limited, frustrated, or down about himself because of his heart disease, I have grieved all over again.  For me, one of my greatest challenges as the mother of a child with HLHS has been to avoid letting my own grief about Jake’s struggles color his interpretation of his world.  Sometimes I have succeeded at that, and sometimes I’ve missed the mark.  Parenting is an art, not a science – right?

Perhaps the greatest words of wisdom I can offer from 19 years of HLHS are these:  You are stronger than you think and so is your child. 

We have been incredibly, wonderfully blessed with an amazing kid.  Jake is outgoing, personable, funny, well-liked, and happy.  He is currently a freshman living away at college, loving the experience and working hard in the classroom and at his job.  He gives himself weekly immunoglobulin infusions in the common room of his dorm and doesn’t care who sees his scars.  He matter-of-factly told his boss that he might need to take a rest if they’re doing something really physical but that he’d more than carry his weight.  His friends know he has half a heart but don’t seem to give it any thought at all.  He has tons of friends, tons of confidence, and an amazing outlook on life.  His struggles aren’t over, and there are still times (as recently as last week, in fact) when I grieve all over again in the face of his difficulties.  But as we recently told Jake, when it comes to some of the biggest challenges of all, he has hit it out of the park.  He is a survivor.

You will continue to be utterly amazed by your HLHS child’s courage and capacity for love, empathy, and joy.  I won’t lie to you:  It will be hard.  Some days, just like the early days of HLHS, will be really hard because you will see your child’s social, emotional or developmental life impacted by their heart disease.  You will be sad, you will be frustrated, and you will be angry that your child has half a heart.  But you know what?  You’ve got what you need to handle it and so does that amazing, courageous, miraculous HLHS child of yours.

Trust yourself and your capacity to raise a survivor.  You’ve got this.

A huge thank you to Diane and Jake for sharing your journey, wisdom and insights into Life with HLHS.