Today marks the first day of CHD Awareness week. In order to spread awareness, I have asked some fellow heart moms to share their story. Today you will learn about Jackson. His mama, Jessica, is from Springfield and now resides in California. I was connected to Jess through a fellow heart family I knew at work and am so happy to be able to share trials and tribulations with her. Enjoy! – Sara
Jackson Ira Gourvitz, a.k.a. SuperJigs
I was thrilled when Sara asked me to be a guest blogger; I get to share Jack’s story and it actually has forced me to write everything down – from diagnosis to present day, which is something I’ve wanted to do for months. I know this post will be long, but hope it will bring some level of comfort for anybody who has been affected by CHD – whether it’s your child, a relative, a friend, or yourself.
Our little heart warrior Jack was born on March 28, 2013 after being induced 8 days after my due date. He must have been quite comfy in there because my labor was long (ask my husband about our 20 something walks around the hospital and doing squats together in the grass in the front of the hospital!) All our prenatal checkups were great with a normal heartbeat and perfect ultrasounds.
Jack was born in the morning, and my husband and I enjoyed a day of bliss as we stared in awe at our beautiful baby boy. That night, we had a very thorough night nurse who seemed to come into our room every 20 minutes or so. I remember wishing she would just leave us alone, but it was her diligence that brought Jack’s heart murmur and heart condition to light.
The pediatrician hadn’t heard anything so she called him in the following morning and he confirmed the murmur and got us an appointment that afternoon at Rady Children’s Hospital in downtown San Diego. Ted and I were a little uneasy about the whole thing, but we remembered that Ted was born with a ‘hole in his heart’ that healed on its own.
As soon as we were discharged on the afternoon of March 29th, we took Jack home, had a quick bite to eat, and got in the car to head to Rady’s. We hit Friday afternoon traffic and then proceeded to get lost in the hospital (which is a labyrinth) so we were running pretty late. We finally found the office and the doctor and echo tech were all waiting for us, which I thought was a little unusual. Turns out they knew this was something that shouldn’t want until the weekend.
We did our best to hold Jackson still while the echo tech got a very detailed reading of Jack’s heart. After a little over an hour, he had what he needed and led us straight into the pediatric cardiologist’s office.
This part I remember as clear as day. The doctor, a young slender and very compassionate doctor (Dr. Davis, who we adore today) after greeting us, said: “This is going to be a very difficult conversation, but I want you to know that your son is going to be ok. However, he will need open heart surgery in the next six months.”
As he continued to talk, his words seemed to melt together and his voice became muffled in my ears, as my eyes filled with tears. I glanced at Ted who had a look of complete confusion on his face. Dr. Davis said that our son was born with Tetralogy of Fallot (TOF), which includes 5 heart defects. He proceeded to show us a diagram of a normal heart and a heart with TOF. I don’t remember much after that, except that the doctor said that this part (meaning the diagnosis) along with the surgery itself would be the most difficult parts and that we had every reason to have hope that our son would live a pretty normal life.
Ted and I left the children’s hospital that day in utter disbelief. We were grateful that Jack was healthy enough to come home with us so he could grow and gain weight, but were terrified that he would have a tet spell and turn blue (common in TOF babies when they cry) and all the unknowns of open heart surgery were overwhelming.
As the diagnosis sank in, I realized how uniquely Ted and I handled the trauma. Like lots of men, Ted doesn’t communicate much, but it was therapeutic for him to call all of his family and friends and seek guidance and advice. I, on the other hand, am a person who usually loves to talk but couldn’t bear to bring up the topic. I was so terrified that I couldn’t even go online – I was so scared of what information I would most likely find.
Time went by, though, and Jack did well. We spent lots of time at the cardiologist but it became comforting because we knew Jack was in the most capable hands. I found some groups on Facebook and gained more confidence in my ‘heart mom’ role. I was lucky enough to have a friend who introduced me to a woman whose son had the same condition and had surgery as an infant about 5 years ago and is now doing great. My exposure to other heart moms and hearing their stories gave me the knowledge and confidence to start educating myself in TOF, CHD and OHS (you gotta laugh at all the acronyms!) and learn all I could to become the best advocate I could be for my son.
At 4.5 months of age, Jack’s oxygen sats had decreased to the 70s and his growth was slowing, so we knew it was time. We were fortunate that his cardiologist had fully prepared us that his health would start to decline and that would be the indicator that surgery would soon be scheduled. We waited for what felt like forever and finally were given a date. On August 12, 2013, our infant son would be put under heavy anesthesia, his chest would be cut open, his arteries clamped, blood transfused so there would be enough blood to run through the bypass machine, heart stopped, VSD patched, and valve opened. The previous sentence was the thought that ran through my head, minute after minute and day after day. What if something went wrong? It just couldn’t go wrong. It had to be perfect, there is no room for error in cardiothoracic surgery. It probably doesn’t need to be mentioned that I prayed to God every chance I could get that my son would survive this surgery and continue to thrive. I have to say that I don’t know how I would have gotten through the stress of the approaching surgery without my husband, the rest of my family (especially my aunt and mother), my friends, my fellow heart moms, and Jack’s outstanding cardiologist and surgeon.
Jack was lucky enough to be the first case of the day, so we had to be at the hospital by 5am. We lived in a little beach town at the time that has a surfer statue (The Cardiff Kook) that is known to be dressed and decorated for special occasions. My friends made a great “Pray For Baby JIGS (Jackson Ira Gourvitz)” poster and dressed the Kook with one of the t-shirts I had made for us to wear on the day of surgery.
We arrived at the hospital and I was feeling surprisingly confident. I had spent so much time waiting and worrying and I was glad that the time had arrived. We checked in and greeted family who had come to support us. Less than an hour later, Jack was ready to go. We handed our precious little guy over to the anesthesiologist, and went to pray with the family for a safe and successful surgery.
With our pager in hand, Ted and I tried to stay busy and knew we’d get a page when Jack’s chest was open and he was on the bypass machine. We went to the cafeteria, walked around the hospital grounds, looked at our watches and finally got our page! They had begun. While quite scary, we felt a little relief that things were moving. I can’t describe the feeling of knowing that at this very moment, my infant son’s heart is not beating.
Next, we waited to get that page that everything went well, and is over. We waited for what felt like forever. Ted and I had to take another walk, because more time had gone by than we were expecting. We decided to walk to the Ronald McDonald House and saw a few kids shooting baskets. To this day, I know that must have been some sort of divine intervention to calm our nerves. We joined in with the giggling kids on this gorgeous, sunny, San Diego day. We smiled and laughed and right when we put the basketballs away, we got our page. Jackson’s heart was beating again and the surgery was successful!
Jackson was in recovery, but we were told we would need to wait another hour or so to actually see him. We were instructed to go on up to the room outside the PICU and wait for the surgeon. About an hour later, we saw a team of doctors surrounding our tiny son on a giant gurney, wheeling him into the PICU. One moment I will never forget is getting a giant smile and thumbs up from the anesthesiologist. What an incredible relief! Jack’s surgeon, Dr. Lamberti, came in a few minutes later and told us that everything went well in the operating room. He was able to patch the VSD with Jack’s pericardium tissue and inserted a transannular patch on his pulmonary valve. Jack’s valve was unfortunately not spared (which is common in kids with TOF) meaning that he will need another operation to replace the valve when he reaches a certain age. The latest we’ve heard is that it will most likely happen when he is between 8 and 12 years old, though it could be much sooner or later.
Once Jack was stabilized, we were able to go in and see him. Everybody told me that part was really tough – and it was. But I had seen so many photos to prepare myself, so there were no surprises. As a mother, I think you simply look past all the wires and monitors and just see your child.
Jack’s vitals were great right after surgery and he was slowly weaned off of the paralytics and other pain meds so he could wake up. He was awake by that evening and very hungry! The nurses are very careful about feeding babies right after surgery for many reasons, so Jack didn’t get to have any milk that first night. The next morning, the nurse decided it was ok to let him have some breast milk out of a bottle and he seemed to be doing really well. So I took my first break and went to the nearby hotel room we had booked for a quick shower and nap. I came back to the hospital to find about 15 doctors in Jack’s room. My heart dropped. He apparently didn’t tolerate the milk and his 02 sats quickly dropped, so he was re-intubated. He had such a severe reaction that he had pleural effusions in his lungs and one lung had nearly collapsed. This was the beginning of the tough road of recovery for all of us.
The doctors couldn’t determine the exact reason for such a quick and negative reaction to the fluids, and there were a few potential culprits, so we took everything very slow and cautious from that point on. They feared chylothorax, a condition where the lymphatic ducts are injured during surgery and the body can’t tolerate milk fat. The docs also suggested that Jack’s kidneys were acutely injured from the bypass machine (the bypass machine can cause temporary damage to the organs as they’re not functioning while the heart is not beating) since he wasn’t producing any urine. So, he was put on high doses of diuretics to to bring the swelling down and to get urine out.
Progress was slow but steady. I’ve never spent so much time staring at a catheter tube praying to see pee! I won’t go through the details of each of our eleven days in the PICU, but those 11 days will remain engraved in my brain forever. You become a monitor junkie – just staring at the numbers. At first, your heart races with every little alarm and beep and then you start to learn the numbers and get used to the noises. You chat with the nurses and specialists there and they become your friends and heroes, as you ask them the same questions over and over, and – if they’re good – they don’t hesitate explaining their answers to you numerous times.
The most life altering moment throughout Jackson’s recovery was when he was on an upswing. The doctors said that he should be starting to really wake up as they were weaning him off all the pain meds and had been extubated for the second time the day before. I was standing by his bedside with my aunt Janet (who we wouldn’t have gotten through this entire ordeal without, but that’s a story for a different day). Jack had been moving around and suddenly seemed to fall back asleep. This happened right after I was told that he’d be waking up so I was a little confused. Right as I looked up at his monitor, I saw his blood pressure numbers plummet to next to nothing. I asked the nurse what was going on and she looked just as confused and scared as I felt. At that moment, I felt my mind leave my body thinking that the unthinkable was happening. The nurse rushed out to get the doctors who also stared at the monitors. None of the other numbers seemed affected so nobody really knew what was going on. I was desperate to wake Jack up, so I started calling his name and gently nudging him to rustle him awake. He didn’t respond. I was terrified. It felt like an eternity, but I’m sure it was only a few moments later, the nurse flushed his PICC line (a line that goes into his heart to take measurements) and his numbers went back up and he woke up. While it’s still unbelievable that Jack would seemingly lose consciousness at the same time his line gave a false reading, that is a defining moment that I will never forget. I will not take one day with my son for granted, and am forever grateful for all of those people who have helped repair his heart.
Because Jack’s valve was not in a condition to be “spared” he will definitely need another surgery to implant a pulmonary valve when he needs it. His cardiologist will monitor him very closely and let us know when it’s the right time for surgery. Overall, though, his outlook is great. He can play sports and live a pretty normal live which I realize is quite fortunate considering the circumstances.
Through this journey, I have met so many other courageous heart moms and heart families whose lives have been turned upside down by Congenital Heart Defects. Our stories are all different, but we also have so much in common, and I’m so happy we can all unite for CHD awareness week and help educate and raise awareness for all heart warriors fighting such huge battles. Nearly one in 100 babies are born with CHD and it’s the leading cause of infant deaths in the US. Here are just a few more facts about CHD – and thank you for your support!
- Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
- The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
- In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.