Day 6 brings us Jason and Jarod. Jason and his family were in the hospital the same time as us. We had to honor to get to know them and its an honor to share his story...and its a pretty amazing one. Jarod came into the world small..but now he stands tall and has a lot to show this world! Both these boys and their families have had to deal with things "outside the norm" and they are rising to the challenge!
MEET JASON!!!
JASON’S STORY
Jason’s journey with CHD begins in Jacksonville, NC at the Naval Hospital aboard Camp Lejeune. At the time, Chris had about 7 months left in his contract with the Marine Corps, and wasn’t planning to reenlist. The baby was due in June, Chris was getting out in July, and we had to get ready for this bundle of joy. So we agreed that me moving back home to Philadelphia was the best idea. I could live with my parents, Chris would move back into the barracks, and we could save money. I could find us a place to live for when the baby came, and Chris could focus on finding a job after he got out.
I really wanted Chris and I to find out what the baby was together, so we scheduled my 20 week anatomy scan, and planned the next day to be the big move. At the time, we didn’t have a lot of money and couldn’t afford to rent a truck, and move all of our furniture to Philadelphia, and store it for the months to come. So I sold all of our big belongings and we were just down to the bare minimum. Everything we owned could fit into the cargo space of our Jeep Cherokee.
On the day of the appointment, we had everything packed and ready to go. We got to the hospital and were anxious to see the ultrasound. The tech told us that she would wait until the end to tell us if it was a boy or a girl, after she did all of her measurements. The tech was very chatty, but we noticed she kept getting more and more quiet. Until at one point she abruptly left the room, and came back with a doctor. At this point, we were getting extremely worried, because no one was telling us anything. After the doctor looked around for a while he finally told us that the baby had a very large cyst in his abdomen, he actually looked pregnant in the ultrasound. The doctor said it could be a kidney that didn’t develop properly, or a testicle. The whole time the doctor kept saying “he”, and I didn’t even notice, I was just so worried about my baby. That’s how I found out it was a boy, by accident.
They wanted me to go and see specialists at The University Of North Carolina in Raleigh the very next day, and I kept trying to tell them that it was impossible, I was moving to Philadelphia tomorrow. The doctor said he wouldn’t “advise” traveling in my condition. After we were shuffled around from department to department for what felt like hours, I was finally able to get an appointment with Hahnemann University Hospital in Philadelphia.
Now came the hard part, I had to say goodbye to my husband. With the future of our baby now unknown, we had to separate. I had to take the 9 hour drive up to Philadelphia, by myself, and my mind was racing. A few days after I got to Philadelphia was my appointment. With my Mom there as support, I went to the Maternal Fetal Medicine office at Hahnemann. There they focused their attention on Jason’s cyst and what it was doing to the rest of his development. The cyst was so large that it was pushing on his lungs, and could interfere with the growth of his internal organs. They decided that an immediate intervention was best. So there, in the office, with no anesthesia, with a very large needle, they went through my stomach, and into Jason to remove the fluid in the cyst. Even though the pain was excruciating, I had to stay completely still so that the needle did not pierce anything it wasn’t supposed to. I tried to focus on counting the spots in the ceiling and listening to my Mom’s encouraging words. After what felt like an eternity, they were done. They removed about 90% of the fluid.
After that was over, I thought we would finally be in the clear. Then, the doctor came back in with a very somber look on her face. She said that during the ultrasound, they noticed Jason seemed to have club feet. A condition in which his feet were permanently turned in. Then, she hesitated and said, “We also see something is wrong with his heart.” I will never forget those nine words. Then she began to explain to me that with all these abnormalities they were finding, there was a good chance that Jason had a genetic disorder. She said it could be one of 3 different disorders, all of which were fatal.
I was completely numb. I felt like such a failure. My one job as a woman was to make children, and I couldn’t do that. In my mind, I went to a very dark place. I could hear the doctor and my Mom talking, but I wasn’t listening. I was trying to wrap my head around the fact that the baby I was carrying was going to die.
The fluid they had removed from the cyst was going to be sent for genetic testing, but it would be a while before we got the results back. The doctor said she wanted us to go to CHOP, to their Fetal Heart Program for a second opinion. After we left, I waited until we got into the car and I could get my thoughts together, then I had to call Chris. He was waiting patiently for my call all night to hear what happened at the appointment. I had to tell him that our baby was probably not going to make it.
The time before my appointment at CHOP was terrible. I spent most of the days in bed, and would find myself crying hysterically in the nursery I had just put together. I no longer imagined holding my baby and rocking him to sleep, but instead I imagined what it would feel like to bury my baby. I was receiving sympathy cards in the mail, and whenever I ventured out of the house, I feared people asking me about my pregnancy. I didn’t know what to tell them when they asked if it was a boy or a girl, if we had any names picked out, or when I was due. At this point, I didn’t feel pregnant anymore, my baby was already dead in my mind. I had no hope.
On the day of our appointment at CHOP, my Mom and I got in the car, and returned to the place where just over 10 years ago, my brother’s life was hanging in the balance. Struck by a car, and needing emergency brain surgery, he spent 5 days in a coma, woke up, and said, “I just want to hug my Mom.” Now, at the age of 20, you’d never know it. So my Mom, was optimistic that CHOP could give us different news, and luckily, she was right.
After 8 hours of tests, ultrasounds, and echo-cardiograms, we were told that there was HOPE. First off, Jason did not have club feet, they could clearly see his feet move in and out. Then, they said the cyst had grown back slightly, but no where near it’s original size. And his heart, was fixable. He was a complex case, but they had seen and treated it successfully before.
The official diagnosis was Transposition of the Great Arteries, Coarctation of The Aorta, and Tricuspid Atresia, which caused a hypoplastic right ventricle. The course of action was to do a series of 3 open heart surgeries, usually performed on kids with Hypoplastic Left Heart Syndrome. It wasn’t the greatest news ever, but it was much better than the previous news we had received. We also learned that his genetic testing came back completely normal, so if the surgeries were successfully, our baby would be fine. I was FINALLY able to breathe.
Throughout the rest of my pregnancy, I was monitored every 2 weeks, because the cyst was still a concern. If it grew bigger, it may cause more problems for him when it came time to have his Norwood. The stronger and more developed he was, the greater the chances of the surgery being a success. Closer to my due date, I kept asking them if I could be induced, because I really wanted Chris to be there for the birth. He was still in North Carolina. Finally, they agreed, since there were no more complications with my pregnancy, they were going to induce me a week before my due date. The big day would be Monday, June 6, 2011. So that Friday Chris flew home and we got to spend a couple of days together before we became parents.
Jason was born at the Special Delivery Unit at CHOP, and seven days later had his first open heart surgery with Dr. Gaynor. It went off without a hitch. We spent 5 weeks total in the hospital before Jason could come home. I still remember getting him into his carseat, and crying hysterically as we got into the garage. It didn’t feel real, it felt like we stole him! When we got home, the house was covered in balloons and there were giant signs everywhere that said, “Welcome Home Jason”. He was a celebration, that’s for sure. Taking care of him at home was a challenge, but with his overnight continuous feeds through his G-Tube, I think we were the only parents of a newborn that got 8 hours of sleep every night.
Four months later, he had his second surgery, the Glenn. Our stay at CHOP this time was only 6 days, less than a week, and he was already coming home. It didn’t feel real. I was more nervous to bring him home this time, than I was the last time. But he thrived, just like he’s always done.
Now he is almost 2 years old, and leads an almost normal life. Besides the visits to his cardiologist every 4 months, you would never know the problems that Jason has had. Now, looking back, and seeing where we were, to where we are now, I am speechless. I have gained so much from Jason’s condition. Every breath he takes is a gift to me, and every friend that I have met along the way makes me proud to be a “Heart Mom”. I saw Jason’s condition as a death sentence, now I see it as a life sentence. A life of happiness, smiles, laughter, appreciation for what we have, and a future that is bright. A path lighted by those who have come before us, and those who fight the fight with us. If Jason has taught me anything, it’s to keep fighting.
MEET JAROD!!!
Jarod’s Heart
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 but she was going to refer us 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 14 1/2 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 (this was not an option for us), 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. 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, 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. 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 settled 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 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 doctor’s 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. As I watched him maneuver the chair, 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 for the Fontan". 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 on in amazement at how Jarod continues to inspire so many people. He has this severe heart defect that required 3 major surgeries by the time he was 2 years old, asthma, cerebral palsy, Celiac disease, thyroid problems, ADHD 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.
It has been many years since Jarod has gone through an open heart surgery but just had a cath last July in hopes of answers as to why he is so fatigued lately. They did find that he has severe aortic enlargement and insufficiency as well as some narrowing in his left pulmonary artery at which time they placed a stent. It wasn’t long after recovering from the cath that we noticed Jarod had a different sounding wheeze, different than his normal asthma wheeze. It was a couple of months later when Jarod got sick and we thought he was having a typical asthma flare. He was admitted to our local community hospital but after several days with no improvement, it was decided he needed to be transferred to UVA. It was at that time, they found out that the stent placed in his LPA is compressing on his left bronchus which is not a good combination with his asthma and why he wasn’t responding to IV steroids and 8 liters of oxygen.
Although the typical 3 surgeries for his HLHS have been completed, we have been told it is very rare to have BOTH an enlarged aortic (neoarortic) valve of 40 mm and severe aortic insufficiency so, the team at UVA has referred us to CHOP for aortic valve/root replacement in early summer by Dr. Spray as well as to hopefully remove the stent from his LPA. This will hopefully buy us some time as the next step is transplant. We have met with the transplant team at UVA but they feel this is something they would once again refer us to a larger center for. This will be a very scary time for us as it has been over 12 years since Jarod’s last OHS and he is full of questions. We answer him as openly and honestly as we can and assure him that no matter what happens, we will be there with him and he is okay with this.
Thanks for taking the time to learn about Jarod's Heart. Please feel free to e-mail me with any questions you may have about our journey at heartkdzrck@comcast.net
Heart Hugs,
Stephanie & John
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