It's Heart Month!

Our daughter is a Heart Warrior. We are Heart Warrior parents. Those are statements I never thought would be said by me. February isn't Heart Month just because it has the holiday of Valentine's Day in it but because it is the month we celebrate and bring awareness to real hearts...the hearts that are pumping inside each one of us...that we sometimes take for granted.

I thought a baby having a heart defect was a super rare occurrence and it only happened to women who didn't take their vitamins or breathed in a lot of harmful chemicals while pregnant. But none of that is true. One in 100 babies born will have a heart defect. Here is our story and what we have learned.

It took three gradually higher tech echocardiograms (echo) to finally get our daughter's heart defect confirmed prenatally. The third echo was at a pediatric cardiologist's office. I remember laying on the table while the technician was studying our girl's heart through my belly and the song "Way Maker" kept playing in my head. I wasn't thinking/praying that song in hopes that God would heal our girl's heart...I was honestly praying it that He would make our girl be still long enough for the technician to get the best look at her heart so we would know exactly what was going on. The first two echoes she moved around so much that the technicians couldn't get a good look at her heart. While I was relieved that this third echo was successful I was scared to death at what it meant to have a baby with a heart defect.

I had one more echo before our girl was born just to check on things but I was assured that her heart defect would not land her in the NICU right after birth. And it didn't! She didn't spend a minute in the NICU after she was born. A typically developed heart pumps blood into one side, it mixes with oxygen brought in through the lungs and then the other side of the heart pumps the newly oxygenated blood back out to the body. The cycle continues over and over. Our daughter's heart didn't develop like it should have leaving holes between the two sides and valves not fully formed. This means that the unoxygenated blood coming into the heart was mixing with the oxygenated blood from the other side.

How does this affect a baby? It means that a baby's heart with a defect is pumping even at rest like a marathon runner halfway though their marathon. So they tend to sleep more and have a hard time gaining weight. In the 1960s less than 20% of babies born with a congenital heart defect (CHD) would live to be an adult. Thanks to wonderful medical advancements, today 90% of babies born with a CHD will make it to adulthood. Most babies born with a CHD will have open heart surgery before their 1st birthday, if not within the first few days of their life.

The ideal goal is to get the baby to twice their birth weight and have their surgery between 4 and 6 months old. The older and bigger the baby the bigger the heart which means the surgeon has a little more to work with. Most babies are given a diuretic medicine that pulls moisture away from their lungs (extra moisture around the lungs is a result of the blood mixing in the heart and not flowing exactly the way it's supposed to) making it easier for them to breathe so they can eat more and gain more weight. Some babies do really well and can hold off surgery after the 6 month mark but some still struggle and have to have their surgery earlier.

Our daughter had her open heart surgery at 7 months old. Handing her over to the surgical nurses was the hardest thing I've had to do...but it was the best thing to do. From the time we handed her to the nurses to when we got to see her again was about 7 hours. Her heart was stopped for 2 of those 7 hours...relying on machines to keep her alive. It's scary to think about but we are so thankful to God for keeping His hand on our girl through it all. We are so very thankful to the doctors, cardiologists, surgeon, nurses and staff that took amazing care of our girl through the whole thing. Her open heart surgery was on a Monday and she came home that Saturday...just 5 days after the surgery!

Heart Warrior is a name given to a person who has a CHD. Heart Warriors are resilient...they are 1 in 100, born with amazing strength, true fighters, proof miracles do exist and are real life superheroes. We love our Heart Warrior and are happy to share our journey to those who will come behind us.