The primary purpose of the Helping Hearts Foundation is to raise awareness, unite and empower families dealing with Congenial Heart Defects (CHD’s) through various channels, including the generosity from donors and to fund research.  Being the most common birth defect, 1 in 100 babies are born with a congenital heart defect, meaning there is one or more abnormalities of the heart present before birth.  CHD’s contribute to more infant deaths in the first year of life than any other cause (30% according to the American Heart Association).  The abnormalities can be located anywhere within the structure of the heart, or even the arteries and veins surrounding the heart, and can range from relatively harmless to life-threatening.   According to the Centers for Disease Control and Prevention, 25% of CHD’s are considered critical and surgery and other procedures must be done in the first year of life.  Most of these defects are impossible to pinpoint the root cause.  Some are presumably genetic, while others could be attributed to drug use or an infection during pregnancy.

These defects can often be diagnosed in utero, typically first discovered at the 20 week ultrasound/fetal echo-cardiogram.  Knowing ahead of time, and altering your pregnancy care can mean the difference between life and death.  Other defects that go unnoticed, are either discovered at birth or even at later stages as some CHD’s show no symptoms early on.  A baby with an undiscovered heart defect may have shortness of breath, fatigue, difficulty or lack of interest in feeding, may turn bluish in the face, body and/or extremities.  Some defects may be unable to be fully corrected, but still require attention, often immediately.  Children with CHD’s may grow and develop slower due to the heart pumping harder to overcompensate for the defect.  Early intervention programs can help assist in meeting milestones.  CHD’s can also attribute to genetic mutations that could lead to other genetic abnormalities.  There is no cure for CHD’s, but treatment can be as simple as prescribed medication, to surgery and heart transplants.

After treatment, most children will be able to live a normal life, with little or no difficulty, but will likely have limited physical activity, determined by their cardiologist.  They will see a cardiologist their entire lives, and often have a weaker immune system, making them more susceptible to colds/virus’s and takes longer to overcome illness.  It is very important to keep CHD children away from sickness as much as possible, a simple cold could land them in the hospital for an extended stay or even worse.  Due to advancements in medical care, and medications, those living with CHD’s are living longer, more comfortable lives than decades ago.

Board member Chris Adolph and his wife were excited to have another child so their son would have a sibling to grow up with close in age.  Like a lot of parents, the 20 week ultrasound was highlighted on the calendar, a day of excitement to find out the gender.  Will their son have a brother or sister to play with?  Chris didn’t have a preference with this pregnancy, though his wife was hoping for a boy.  The ultrasound was done at Sinai hospital just like all previous ultrasounds.  This one seemed to take a little longer, the tech didn’t say anything to alert them, so maybe they couldn’t get the right angle, maybe this one just takes longer; they just waited in anticipation.  The tech left the room then returned and said the doctor wanted to speak with them.  This wasn’t normal, something was wrong.  The doctor didn’t sugarcoat it or beat around the bush, he came out and said “Your son has a heart defect and we need to transfer his care to a Children’s hospital better equipped to handle his case, you should also consider abortion as the time window is closing.”  They were devastated and shocked at this gut-wrenching news.  THEY FOUND OUT THEY WERE HAVING A BOY AND HE HAD A SERIOUS HEART CONDITION IN THE SAME SENTENCE.

After transferring care and setting up all kinds of appointments, including monitoring the babies heartbeat twice a week, but they had to wait in agony for the next ultrasound, a 3D scan that would hopefully shed some light on the severity of the situation.  The scan determined that he had a 2 vessel cord (3 is normal), IUGR (was on the smaller side) and coarctation of the aorta (a narrowing of the large blood vessel that carries oxygen-rich blood from the heart’s left ventricle to all other organs of the body).  Again, like most parents, they began researching this condition and everything associated with it.  One very helpful app they discovered was Heartpedia by Cincinnati Children’s Hospital.  This app not only describes in great detail everything about individual heart conditions, but includes pictures, 3D imaging of the heart and inside the heart (showing normal, defect and repair).  When people would ask about their son’s condition, the best way to describe it was to open this app and let the individual look for themselves.  The parents were encouraged to meet with a genetics counselor, which Chris describes as a worse experience than finding out his initial diagnosis.  “The woman we met with couldn’t have been any nicer, but the presentation of all the “what-ifs”’ and “maybes” was such a terrible experience I think could have been handled in a different fashion.”  During that meeting, abortion was also brought up, they sensed the danger, but didn’t want to give up.

Fast forward to his birth, they went in the night before for the pre-delivery check and were told they were being admitted and having the baby that night.  With this pregnancy, they learned to expect the unexpected, so why would delivery be any different.  Prepared for the worst and praying for the best, he was delivered and looked great.  His color was great, extremities looked normal, no deformities, looked alert, crying like you would expect, and most important, he looked healthy.  He was promptly whisked away by a team of roughly a dozen doctors and nurses for examination and testing.  His parents saw him for maybe 3 minutes before these tests.  They wouldn’t see him again for almost 7 hours which seemed like an eternity.  They got to hold him for about 20 minutes before he had to be hooked up his monitors.  They would only see him for around 40 minutes his first 48 hours of life.  They wouldn’t hold him again for almost 3 weeks.  They were given more bad news, his coarctation of the aorta was not nearly as bad as they expected and would not need surgical intervention at this time, but there was a much more serious issue at hand, Total Anomalous Pulmonary Venus Return (TAPVR).  This is a rare congenital malformation where the pulmonary veins do not return oxygen-rich blood from the lungs to the left atrium and instead drain abnormally to the right atrium.  Doctor Vricella said that “in all my years of practice, I’ve repaired a gazillion coartactions a year and TAPVR is much rarer, maybe 5 per year, but I’ve never seen a baby born with both, this will be tricky.”  TAPVR is only discovered in 1% of pregnancies as the babies’ pulmonary arteries are so small and they have to go through the mother to view them.  Dr. Vricella told them this is a serious life threatening heart condition and immediate surgery was the only chance for survival or he would not see tomorrow.  He also mentioned that his small size was working against us, making the odds of survival even less.  Already beaten down and broken, Chris and his wife quickly signed the consent forms, told Dr. Vricella they trusted him and asked the team to get to work.  Chris suited up in a sterile hospital gown and walked along side his son to the operating room and kissed his son before they put him on the operating table.  While briefly in the OR, a Doctor did show him the bypass machine that would take over the heart and lungs during surgery.  This machine Chris describes as wide as a townhouse.  Doctors thought out of the four veins, two were connected, but in surgery the contrast dye showed that none were connected.  For 11 hours waiting for surgery, he had no pulmonary veins connected bringing blood back to the heart.  It’s a miracle that he made it to surgery, but the toughest test would be the surgery itself.  In perspective, just imagine a bag of flour, that is the baby at birth.  The baby’s ENTIRE heart is the size of a strawberry; these arteries are not much bigger than the strawberry seeds.  Dr. Vricella said he had to take the heart out, turn it around, insert a 3mm needle into something HALF the size of Abraham Lincoln’s head on a penny, re-route the small pulmonary arteries and stitch around that small area.  When Chris asked if it was robotics doing this, Dr. Vricella said it was all him and he does not have any caffeine before surgery, how his hands can be that steady is amazing in and of itself.  During surgery, the baby found himself in cardiac arrest for 45 minutes, but made it through the grueling nine hour surgery, which was noted as very challenging.  Dr. Vricella describes his work as “So if I have to describe the feeling of operating on a new-born heart. I think the perfect analogy is that of driving a car at 200mph on a single lane with water on either side. There’s no room for error. I think it’s the most exhilarating, yet humbling experience that you can possibly have.  So to just…summarize it; pediatric heart surgery is the perfect balance between courage and fear.”

The first time Chris saw his son after surgery is something he states is an image forever burned in his mind:  “I walked in his room, the first thing I see is wires everywhere connected to him, more than you can count.  There was a sign above him that read OPEN CHEST.  I figured it was there to let people know he had open heart surgery, don’t pick him up, etc.  Nothing could have prepared me for when I got closer…his chest was…open.  Literally, there was a plastic window in his chest, you could see through, see his heart beating.  I lost it immediately and it took 3 days before I could look at him without losing it.  I don’t know how else to describe it. I had to be there for him, hold his hand, give him encouragement, but I wasn’t strong, I would break down crying within seconds of being with him. It shouldn’t be like that, I wished I could trade places with him, it didn’t seem fair. I know God has a plan for us, but it’s hard going through it. I told my wife maybe this is something he’ll be passionate about and he’ll be a leading heart surgeon one day. Maybe that’s why God put him here.”  The coarcation could not be repaired simultaneously because it would have been too much at once, but the TAPVR was repaired and the family prepared for a long road to recovery filled with ups and downs.  They learned to celebrate the smallest of milestones along the way as each gradual but minor improvement meant a great deal in the big picture.  Genetics testing was done at two different times during the stay and it was ruled to be nothing genetic, his heart just did not develop normally in utero.  After six weeks in the hospital, they returned home and had many doctors appointments to go to, medical staff coming to the house four or more times a week and he was still connected to a feeding tube around the clock. The family can’t say enough great things about the doctors, nurses and home care received, lifetime bonds were established.

Things seemed to be managing well and the family even had newborn pictures done at 2 months old, he looked great in the pictures.  There was a scheduled cardiology appointment, but Chris had to go out of town and didn’t want to miss it, so he asked if the appointment could be moved sooner or later.  The appointment was moved 14 days sooner, only a few days after the newborn pictures.  After the images were taken and the cardiologist reviewed them, the cardiologist entered the room with the surgeon, Dr. Vricella.  This wasn’t normal and the news came bluntly “your child is very sick on the inside and needs immediate surgery tomorrow, he is being admitted now.”  The nightmare continued; he had developed Pulmonary Vein Stenosis (PVS) and there was a narrowing of the confluence between the two atriums of the heart.  The body was forming scar tissue at the previous incision site where the sutures were, thinking it was helping, but in turn, it was not allowing much blood or oxygen to pass through.  Dr. Vricella, originally scheduled to take his bi-annual trip to Cambodia the following morning sent his team without him and he would stay to perform this surgery and catch the last flight out after surgery, so very generous.  He explains “I think that responsibility has affected me as a human being, as a family man. I think that, more so than in probably most other specialities in surgery, we are what we do. We are on call 24/7, 365 days of the year and we are always responsible for our patients; we always go in in the middle of the night. You don’t delegate, you do it.”  This surgery, a suture-less repair, lasted around 7 hours and was also very successful.  Dr. Vricella stated that “he would have not lasted a week in his condition with the rapid progression.”  He also explained that during the recovery, he would get worse before he got better, anywhere from 12 hours to 3 days.  The family gave their hugs and nervously wished Dr. Vricella a safe and productive trip and prepared for the long road ahead once again.  Nurses were shocked to see them back, but it was great seeing all the familiar faces once again and knowing they were in good hands.  The first night was extremely rough and the outcome looked bleak.  He was not responding well, but luckily an angel was sent to guard him, Dr. Kristen Nelson led the team of a dozen staff at times to make sure this warrior would see the morning and beyond.  Dr. Nelson somehow with barely any sleep stayed by his side around the clock for almost two days and did an incredible job; this was not an easy task.  He was discharged a month later and has not had any serious medical concerns since, but is monitored closely.  They named the baby boy Ethan Adolph – and that is why the EA in HEARTS is a different color.  Without him, this foundation would not exist and hopefully he will be on the board one day.

It’s rough in the ICU.  You see things you wish you hadn’t, hear screams and cries, hear panic alarms where all staff goes rushing to a room, and you see and hear the most unfortunate…  It is a tough place to work, and a tough place for a parent to be.  Some people come from all over to be in a specific hospital and don’t have the luxury of having family close by or any support system.  Chris found a bible scripture that caught his eye, it read “God never promises the absence of storms, he just promises to walk with us through them.”  Chris started putting his son’s story online in hopes to reach other people and help others going through similar situations.  Chris started speaking with Carl Wolford of Texas.  Carl just turned 60 years old and had his TAPVR surgery when he was 4 months old in 1958 by Dr. Denton Cooley, a pioneer of modern heart surgery.  This was the second successful surgery of it’s kind! Chris saw Carl as inspiration and hopes that when Ethan is older, the two will meet.  One person reached out to Chris from Georgia in regards to her daughter, Charlie. She was also born with TAPVR and had developed PVS from surgery.  Chris and Charlie’s mother spoke back and forth and prayers were being sent both directions.  Charlie also had a rough time and unfortunately became an angel to her family.  Chris had so many thoughts going through his head when he found out and for the first time ever, he was at a loss for words, “I really felt terrible, I didn’t have the words to make it better, I wish I could have taken their pain away.”  One thing Chris learned in the hospital is no matter how bad your child has it, there are so many others who have it much worse.  Locally, Chris would visit families in the hospital dealing with heart conditions their child faced, especially little princess Everleigh, who he met during his second stay at the hospital.  Everleigh has endured so much in her first year of life, more than most old, retired people, but she keeps fighting everything thrown at her.  Everleigh’s family became close with another heart patient Londyn.  The families said their daughters would grow up together as heart sisters.  In a terrible turn of events, Londyn gained her angel wings and will forever look after Everleigh from above.  For the families, the emotional fight is just as hard and the hospital can be a dark place.  Having your child in the hospital can cause emotional and financial stress, force you to make lifestyle changes like leaving work to be with your ill child, leaving other children at home while you’re at the hospital, and more.  After discharge, even more is thrown at you, with running around to specialized doctors appointments, having blood tests drawn, physical therapy, speech therapy, home visits…it can be just as demanding or more as being in the hospital.  According to the American Heart Association, 30% of parents whose children experienced at least one cardiac surgery develop mental-health issues, such as post-traumatic stress disorder, anxiety, stress or depression. According to the Children’s Hospital of Philadelphia (CHOP), 1 in 5 CHD children will experience PTSD as adults.  Some children may not remember the surgery, however not being allowed to participate in activities with their peers, having the scar on their chest, and being made fun of by peers and called names can all lead to PTSD.

With the culmination of everything mentioned above and more, Chris wanted to give back in a way larger than himself.  Ideas tossed around, he wanted to give back to the surgeon that saved his son’s life twice, he wanted to help other families going through the same journey.  He felt that life was testing him, and there was a blessing that would arise from all this, he said “struggles humble us and make us more grateful.”  After researching what it took to begin a non-profit he had his work cut out for him and couldn’t do it alone.  Everyone he asked to take part was very excited and welcomed the opportunity with open arms.  Together, and with the help of the community, Helping Hearts would like to offer hope, guidance and support to other families in similar situations.