Wednesday, February 8, 2012

Jarod's Story

When we first found out we were going to have a second child, we were thrilled. Our oldest son 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 an awful lot of time on a particular area and then went out to get another doctor to get his opinion...their silence spoke volumes. I of course was a nervous wreck and my OB tried to assure me that it was just precaution and I was referred to UVA for a fetal echo. It was on that spring day in 1998 that has lead us down the path we have been living for the past 12 years. The pediatric cardiologist confirmed the hunch my OB had which was yes, our unborn son had hypoplastic left heart syndrome (HLHS).

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, which was not an option and we talked more with the pediatric cardiologist. We were given the options of 1) Transplant, 2) The 3 stage surgical repair or 3) comfort care. 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 my 3 year old son 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 and was whisked away just as fast as he came into the was barely a glimpse that we got of him before he was taken to the NICU, they didn't even take time to get an arm band on him.

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 weighed only 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 feeding tube. 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 on our way to 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...this was more devastating to me than the heart defect because at least they were working to fix the heart but the CP was something that would not 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...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 and I just couldn't commit to a wheelchair. 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 a blood infection that landed us almost 6 weeks in the hospital for IV antibiotics

Now, that the repair has been completed, we sit back and look 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, Celiac disease, thyroid problems and now may have borderline diabetes 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.

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

Heart Hugs,

Stephanie & John

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