Our Personal Introduction To Hypoplastic Left Heart Syndrome

When we first found out we were going to have a second child, we were thrilled. Our oldest son, JW, was 3 years old and we just knew the timing was right. It wasn't long though before our lives would be changed forever. At a routine ultrasound, my OB was spending a really long time on a particular area and then went out to get another doctor to get his opinion.  They took a look together and their silence spoke volumes. I of course was a nervous wreck while my OB tried to assure me that it was just precaution to be referred to UVA for a fetal echo. It was on that spring day in March of 1998 that has lead us down the path we have been living for the past 15 years. The pediatric cardiologist confirmed the hunch my OB had which was yes, our unborn son had Hypoplastic Left Heart Syndrome (HLHS), a complex congenital heart defect (CHD), fatal if left untreated.


At this time we met with a surgeon, met with a second OB who offered to terminate the pregnancy even though we were at 22 weeks (never an option for "us") and we talked more with the pediatric cardiologist. We were given the options of 1) Transplant but newborn hearts are hard to come by; 2) The Norwood Procedure, the first part of the 3 stage surgical repair; or 3) comfort care which is to take him home to pass away at home. We took in as much information on the defect as we could and went home to research more on the internet. I don't think I stopped crying for a week but vividly remember JW holding my hand and telling me "don't worry mommy, the doctor's will fix his heart".

As the months went by, and after much research and a second opinion at MCV, we decided that MCV would be the best place for Jarod to have his surgery. We had close, weekly follow up visits with my local OB until Memorial Day weekend of 1998 when we made the drive to Richmond to be admitted for induction. It was a long labor and finally, at 3:30 in the morning on 6/2/98, Jarod arrived into the world very quiet.  He was whisked away just as fast as he came into the world.  We barely got a glimpse of him before he was taken to the NICU, it all happened so fast that they didn't even take time to get an arm band on him.

As the hours went by, we had a lot of doctors and nurses in and out of the room with updates, concerns and even thinking that surgery couldn't be performed because he only weighed 5 pounds, 4 ounces. After the surgeon evaluated Jarod, he felt he could proceed and surgery was scheduled for 2 days later. Jarod sailed through the surgery and was home in less than 2 weeks but did have to come home with a feeding tube which lasted about 3 months.

We settled into our routine, and were now used to the multiple doctor appointments and the dreaded feeding tube and all the stares and whispers that come with that.  It was not long before we learned that the surgeon was moving to Texas and we knew the second stage of the procedure was done around 6 months old. Near that time, Jarod started having more symptoms and was working really hard to breathe. Not sure what to do, our cardiology team at MCV had trained with Dr. Norwood when he was at CHOP so they called him for a consult and on 12/27/98 we were at A.I DuPont Hospital for Children for Dr. Norwood to perform the hemi-Fontan. Jarod sailed through that surgery and was home in 5 days! Unfortunately, soon after getting home, Jarod came down with a respiratory infection which landed him in our local hospital for a week, testing positive for RSV, which lead to his asthma.

Once again, we settle back into a routine but in this time we notice that Jarod isn't hitting those milestones that he should be so our pediatrician ordered a brain MRI which showed that he had cerebral palsy.  With this, I was absolutely crushed.  To me, this was more devastating than the heart defect because at least they were working to "fix" the heart but the CP was something that would never get better. Once again we were faced with another obstacle and more specialist appointments and just didn't know what the future was going to hold for Jarod. There were some doctors that said he would never walk or talk but sometimes the doctors just need to step back and realize that they are talking to a parent who will go to the end of the earth and back for their child. We ended up going to Kluge Rehab Center for Jarod to be fitted for a wheelchair and as I watched him, it broke my heart. I just couldn't commit to a wheelchair because I felt that if I put him in the wheelchair, that would be where he stayed. It wasn't long before he pushed his walker aside and started walking. Though his speech still needs a lot of work, he is talking and goes to regular school.

Ahhh, things are starting to seem really normal with the doctor appointments becoming fewer and fewer and all continues to go well. We had a year without any procedures but at a routine follow up and meeting with the new surgeon at MCV, he told me that "I think I can fix this if we wait a year". My medical and mom radar was going wild and I insisted the results be sent back to Dr. Norwood so he could complete the repair which we did in 6/00. Once again, Jarod sailed through the surgery but he ended up developing an infection in his incision that went into his bloodstream, landing us almost 6 weeks in the hospital for IV antibiotics.  I think this was the hardest part, having to be so far from home, missing JW's kindergarten orientation, his first lost tooth and so much more.

Now, that the repair has been completed, we sit back and look on in amazement at how Jarod continues to inspire so many people. He has this severe heart defect that required 3 major surgeries before 2 years old, asthma, cerebral palsy, probable Celiac disease, thyroid problems and ADHD but he always wakes up every morning with a big smile and a go get em attitude! I only wish I had half his courage and bravery.

Although Jarod's repair is complete, during a cath last summer, it was found that he has a rare complication of both a severe leaking and enlarged aortic valve which now needs to be replaced. Jarod is scheduled for an aortic valve/root replacement on 6/20/13 at Children's Hospital of Philadelphia by Dr. Spray. At that time, it will be decided if they will remove the stent that was placed in his left pulmonary artery but now compressing on his left bronchus.  We will be using this blog to update how Jarod is doing during and after surgery in Philadelphia.

Thanks for taking the time to learn about Jarod's Heart. Please feel free to e-mail me with any questions you may have at heartkdzrck@comcast.net.  

The photo below is a "normal" EKG for Jarod :)