“Robert has advanced heart failure…..you need to set up an appointment with the heart failure/transplant team as soon as possible.” These were the devastating words my sister and brother-in-law heard last Friday afternoon following Robert’s echocardiogram.
But the story of my sweet nephew, Robert, doesn’t start there. This ten year old boy has been enduring and surmounting heart and health related obstacles since before his birth. When my sister Andrea was eight months pregnant an ultrasound determined that Robert had a serious congenital heart defect called Tetralogy of Fallot (TOF). Before Andrea and my brother-in-law, Michael even had time to process this devastating news and register the birth at the Children’s Hospital of Philadelphia, (CHOP) she went into premature labor 4-½ weeks early and ended up at Hunterdon Medical Center. Following delivery, Robert was rushed by ambulance to CHOP three hours later.
After 4 weeks in the NICU at CHOP, with a diagnosis that he had GERD too, they were sent home with a huge amount of meds, an oxygen tank and pulse oximeter. Their life was consumed with worry and doctor appointments.
At 3 months old, Robert had his first open heart surgery to repair some ventricular septal defects (VSD) and they were told that he may need additional surgeries in the future. But a week later he wasn’t stabilizing and they needed to perform an emergency transcatherer procedure. To make things even worse, my sister had been fired from her job.
This was a huge financial blow and a discriminatory case, but their focus at that time could only be on Robert. As a result of losing her job, they had to transform their home to a two-family in order to make ends meet, especially with all the doctor bills pouring in. They now had a tiny one bedroom studio-sized apartment. With such limited space, Robert didn’t have his own bedroom anymore. The dining room has been his space for the last nine years.
Let me take a moment here to thank you from the bottom of our hearts for reading this. I know this is long but this is their story and they really need our help right now. Also, let me describe what an amazing kiddo Robert is:
The irony here is that he has an absolute perfect heart of gold. What I mean is that he has an extraordinary amount of compassion and empathy for every living thing. For all that he’s been through, he is ALWAYS happy, emitting joy, light and love for life, family, friends, and animals. He’s sensitive and deeply cares about people and their feelings. He loves hanging out with his older sister Alyssa, and playing with his cousins and friends. He’s a big reader, and loves creating and using his imagination. A huge fan of trains and Space Jam, his cat Kwazii and his new kitten, Eddie, are his buds.
Golf is his game and he’s super good! Told that he could never play competitive sports, Robert has an abundant amount of energy, enthusiasm, and loves watching sports. His favorite teams are the New York Giants and North Carolina Tarheels...and his favorite basketball player is Steph Curry. Michael and Andrea are extraordinary people and incredible, loving parents committed and devoted to giving Robert his best life and everything he needs. I am continuously in awe of their strength and endurance during all the insurmountable, tumultuous times they’ve had to overcome.
Unfortunately, Robert’s challenges didn’t stop there. He had feeding/eating issues post surgery and through ng-tubes and g-tubes, he needed early intervention to assist with feeding. As a preemie, they noticed that he was delayed developmentally in several areas and needed physical, occupational and speech therapy. He was diagnosed with “failure to thrive” since he came off the tubes and still struggles to this day with eating well. As the years went on he was also hospitalized for pneumonia and a double hernia.
On September 2018 Robert had an extensive MRI done on his heart. The results revealed that his right ventricle had enlarged too much and his cardiologist insisted that a second surgery was immediately necessary. He needed a pulmonary valve replacement (PVR). Dismayed by the news, Robert's parents opted to first try the less invasive transcatheter procedure but more bad news unveiled that due to the irregular anatomy of the location of an artery in his heart, it didn’t work.
This summer, on June 26, 2019, Robert went in for his second open heart surgery at CHOP. What they made sound like a standard PVR, turned out to be an absolute nightmare!! Robert’s surgery lasted 4 hours longer than expected due to complications with the first valve not working. After placing the valve and removing him from the heart and lung machine to determine if the valve was functioning properly, they realized he was unable to sustain life. So they removed the valve and tried to put in a smaller one and the same thing occurred. Due to the length of the surgery they had to close him up, he had experienced too much trauma. Nothing worked.
He was in worse shape now than he was when he entered the hospital that morning. He now had a pacemaker and was hooked up to a breathing machine and a tower of meds. We were on our knees reaching out for prayer. We reached out for love and light. We needed answers.
Due to Robert's malformed heart, during the surgery his left ventricle (the good one) was damaged and it was no longer pumping correctly. He was in the CICU and his condition was fragile. We were all DEVASTATED. How could this be happening?
There are far too many details to go into, but Robert’s spirit, once again, prevailed and he made a miraculous recovery from being so close to death. However, on Friday, August 2, 2018, his echocardiogram shocked us all. His left ventricle wasn’t recovering at all, instead it had worsened. Andrea and Michael sat through another heart-breaking diagnosis: their sweet, beautiful boy had advanced heart failure. I can not emphasize enough how distraught we are. This family has endured so much and to hear this news was beyond comprehensible.
This is where you come in. Robert's situation is URGENT. We need help. We need more than prayers right now. We want to see that Robert gets the best care possible. It looks like a heart transplant is foreseeable. Besides the emotional toll this is taking on Andrea and Michael, they will also need more time off from work again to travel to different hospitals within the country to determine the next step of Robert’s journey.
As an aunt, sister, and sister-in-law my heart is wrecked seeing the anguish they’re all enduring. The last thing they need is to worry about their finances and impending bills of hospital stays, meds, travel, lodging, etc. We need to help lessen their burden during Robert’s fight for life. To top it off, prior to this horrifying news, they decided to take back their house so Robert could finally have his own bedroom. Robert has been so excited and we want to grant this wish for him! If you are able in any way to support Andrea and Michael in Robert’s fight please know that your contribution will lessen their burdens and be used in the most mindful ways. From our hearts to yours, we thank you for anything you can give.
Please, we ask that you share his story with your family and friends! We need all prayer warriors on deck and all the
love and light too! On behalf of my sister and her family we THANK YOU FROM THE BOTTOM OF OUR HEARTS.
With Love & Gratitude,
- LauraSteveWallyMatt Mauro/Zacek
- Rob Pinter
- Alexandra Starr
- Cecilia Aerstin