Monday, February 24, 2014

Congenital Heart Defect Awareness Month - Honoring Super Joe's Amazing Heart

We spend the majority of our time raising awareness and advocating for Down syndrome, however, there are other causes that Super Joe's life has helped us to become more aware of and that have made us more cognizant of the lives of families with children who have extra health concerns around us. 

Photo by Nat.
February is Heart Month and approximately half of all infants born with Down syndrome have a heart defect. Many of those defects have serious implications and require surgical intervention.

When we were just 22 weeks pregnant with Joey we learned that he might have a heart defect. Within two weeks were had a fetal echocardiogram and his congenital heart defects were confirmed. Joey was born with an Atrial Septal Defect, which is a large hole between the two collecting chambers. Additionally, he was born with an abnormal mitral valve, which in his case is a cleft mitral valve that causes leakage.

Photo by Nat.

Most recently we found out he also has a PFO, which is a Patent Foramen Ovale. In 75% of the cases a PFO will close on its own shortly after birth. Usually this is a heart defect that is caught early on, but we did not know about Joey's until his last echocardiogram with his cardiologist. Plus, we have learned that Super Joe never settles on being "typical" or playing by the rule books- he usually has his own entirely unique spin on every condition. 

Learning about Joey's potential need for open heart surgery while we were pregnant introduced an entirely new world to us. Suddenly, fetal hydrops and a diagnosis of Down syndrome took the back seat and we were facing the facts that if Joey survived the pregnancy (of which he was given a mere 2% chance of being born) he would most definitely need open heart surgery to repair the large hole in his heart. 

Instead of maternity visits to the high risk fetal medicine doctor, suddenly we were in the waiting room of the Akron Children's Heart Center along with children of all ages waiting to learn the latest on our babies' heart condition.

Photo by Nat.

Joey's cardiologist at Akron Children's is incredibly professional, incredibly skilled and was 100% accurate in his diagnosis. I still remember the day he told us that Joey would likely need open heart surgery to repair his ASD. He said it with such compassion and care and he told us that he truly hoped he was wrong. Unfortunately, he was far from wrong.  He was completely correct and from that moment on we started the long waiting game of trying to figure out when and where Joey would need his heart surgery after he was born.

Looking back now I can hardly believe the numbers of appointments, the stress, the worrying and the waiting that we all went through. 

After he was born we would spend every day wondering if his lips were starting to turn blue. We wondered if he would go into congestive heart failure before we could get his heart repaired. I honestly don't really know how we survived those final months of pregnancy and then those long 9 months until he finally had his heart surgery at the University of Michigan.

Joey and his heart surgeon, Dr. Bove.

Seeing him for the first time after surgery.

Seeing Joey for the first time after his surgery was surreal. He was in a medically induced coma, his little body was swollen from all the fluids and his hair suddenly had taken on a strange neon yellow quality. He was alive. But he just wasn't quite Joey, yet.

After nine long days of Tom and I staying beside his bed day and night we were finally able to make the three-hour drive home back to Ohio. 

I remember a conversation after we returned home with an acquaintance who made the comment  that she didn't really understand what the big deal was since it was just a "routine heart surgery." Needless to say, we aren't really acquaintances anymore. Any surgery, any procedure is anything but routine for the child and the parents who watch their child go through it. For us, open heart surgery was unmarked territory. It was terrifying for all of those months through the pregnancy and then all of those months while we waited for his heart to grow bigger and to finally have the surgery.

Knowing that his rib cage was being cut open while we sat helplessly out in the waiting area nursing cups of coffee, knowing that he would have drainage tubes and scars and that he would be in pain and would have no way of telling us was anything but routine. It was hell.

His first smile after surgery.
Tubes and wires were slowly removed each day.
But he made it. We made it. We all survived. Joey's Congenital Heart Defects are a part of our lives. We take any illness very seriously. We cringe when he eats a blue sucker or Popsicle. We continue his yearly appointments with cardiology.

And we wait. We wait for that day when his cardiologist tells us it is time to do it all again. When he tells us that the time has come for Joey to have another surgery to repair or replace his Mitral Valve. The problem is, when he had his first heart surgery, the surgeons were not able to repair his Mitral Valve because it was simply too small. Someday it will be time to do this all again. 

In the meantime, Joey is doing amazing. He is thriving. He is learning. He is working on talking--his latest phrase is "I am strong!"while he holds up his muscles. 

He is working super hard on learning to walk. He chases Hershey, Tommy and the rest of us. The past five months have been the longest he has ever gone without undergoing surgery and the difference in his health and stamina is remarkable. He finally has the opportunity to have all of the anesthesia out of his body and all of the trauma of the past three years of surgeries behind him.

In his first three years of life he had 7 surgeries at 4 different hospitals- Akron Children's, University of Michigan, The Cleveland Clinic (leading with 3 of those 7) and University Hospitals. 

We think that 2014 is Joey's year. We are hopeful that by the time the Buddy Walk rolls around on July 26th that he will walk over the finish line on his own.

Whatever he does- it will fill our hearts with love and pride. However he does it will be his own unique way.  

We are so proud of our Congenital Heart Baby and we are so grateful for the care and treatment he has received. If you have or know of a Congenital Heart Baby- we also send you our prayers and love for your own journey of the heart.

Photo by Nat.
As far as the next time he needs open heart surgery? We will cross that bridge when we get there and in the meantime we plan on enjoying every single day.