From The Inside

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Interview: Raising a heart hero and raising CHD awareness

I have mentioned Luna and her heart condition a few times on this blog, and how terrifying it was to find out about it, but how completely manageable it has ended up being (and will hopefully be). Before Luna’s diagnosis I had no idea that Congenital Heart Defects (CHDs) were so widespread and common, and would have loved to have had more information on them before we were sent to the pediatric cardiologist to find out what was wrong with her little heart. The idea that your tiny baby’s heart may have problems really does instill great fears in your own heart and Dr Google doesn’t help alleviate those fears. On Luna’s diagnosis I immediately sent a message to my friend Dara as I knew that she was well-versed in the world of CHDs, at the time she was the only person I knew who had a young child with heart defects, and she provided me with much comfort and a lot of advice. Today’s blog post is going to showcase the amazing McBee family, and most of all Shane, one of the toughest, most resilient and gorgeous kids I know, and how they have coped and still cope with diagnosis, surgeries and the day to day of living with CHDs. I interviewed Dara a few weeks ago because I wanted to write a post that could in some way portray life with a child who was born with complex CHDs, how there is no real “fix” to any CHD and hopefully help raise a little bit more awareness on CHDs in general.

Shane has a complex congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). While HLHS is less common than Luna’s Atrial Septal Defect (ASD) or the Pulmonary Stenosis she was diagnosed with, reports show that this defect affects 1 to 3 in 10,000 live births. With this perspective the word rare seems to be a little misused. Shane is now 4 years old and has already been through 4 open heart surgeries and countless heart catherizations and other more or less invasive procedures. These procedures are pretty modern, and while advances in both medicine and technology not only help diagnose CHDs before birth, or very early in life, but also help find solutions to extend life expectancy by years, even decades, CHDs still remain the most common birth defect, and there is no permanent fix for the more complex ones (and those that take place for the more simple defects may not be permanent either). I’m so happy that Dara agreed to answer my questions below, and her candid responses pulled hard at my heartstrings. Please take the time to read this post, comment on it and share to help us raise awareness. You can find links to Shane’s Hoops and other CHD fundraising things that we are all working on at the bottom of the post. I will forever be grateful for Dara for being there for us.

Jade: How did you find out that Shane had HLHS?

Dara: At Shane’s 20 week anatomy scan, we were told that I needed to come back for a second look as they couldn’t see all of his heart or his upper lip.  Understanding that this isn’t uncommon to need another look, I wasn’t worried and scheduled the follow up.  After that second scan, I didn’t hear anything, so I assumed all was well… until my OB checkup at 31 weeks.  The nurse asked if I had the follow up scan, and I answered yes.  She said, “I see the second, but I don’t see the third.”  Umm, what third scan?

 They scheduled an appointment for me at a practice that specialized in fetal monitoring, saying perhaps it was the technician’s skill level or the equipment.  Ignorance is bliss, and I went that Tuesday morning by myself to the appointment.  The technician there was very cheerful at first, and then I noticed a difference as she kept rolling the scanner over my round belly.  She soon said that she was going to bring the doctor in, and if something was wrong, he would be able to tell.  A pit immediately formed in my stomach.  The doctor came in and looked for himself, and the technician asked if it could be Ebstein’s, and the doctor said no… He then told me my son had Hypoplastic Left Heart Syndrome.  His left ventricle hadn’t developed, and he would need three surgeries, the first right after he was born. 

He may have said more, but I was already tuned out.  I couldn’t believe what I had heard.  I was crying and shaking.  The technician gave me some tissues and a few minutes to collect myself.  I called Patrick, who was at work, and I am surprised I could get the words out, much less that he could understand me – “There is something wrong with his heart.”  I remember sitting in the hallway and a couple passing me, looking alarmed, and I told them not to let me worry them.  Here I am, still worrying how I am affecting other people and not wanting to scare them.  Then, with Patrick on the phone, who barely had time to take in the news himself, I sat with their genetic counselor’s office and we had to review our family histories.  She gave me a copy of an article about HLHS.  Then I had to drive myself home… thankfully, I got myself together enough to make it home safely.

Both Patrick’s mom and my mom met us at our house.  I showed them the article.  I kept staring at the line that said he may need a transplant instead of the surgeries.  Once we collected ourselves, we called Patrick’s cousin, whose son has Tricuspid Atresia, to see how they handled everything and where they went for his care.  (We bought their house from them when they moved to Colorado, which doesn’t help when it comes to questioning the genetic link vs. environmental factors.)  Thank goodness for our strong support system.

J: In layman’s terms, what is HLHS?

D: HLHS, Hypoplastic Left Heart Syndrome, is where the left ventricle of the heart, the main pumping chamber, is severely underdeveloped.  It is commonly referred to as having half a heart, as the heart only has one pumping chamber.  There may also be narrowing of the aorta, which Shane had repaired in his first surgery, and openings between the atriums, which Shane does not have. 

J: What steps did you and his doctors take to make sure you were in the best hands possible?

D: We started the day we received his diagnosis.  We called Patrick’s cousin and knowing how well his son did with his surgeries and that he was how an active school age boy, we wanted to know where they went for his care.  Click here to continue