Our Family in a Snapshot: Profile of a Handsome Boy

Recap – Initially in the NICU the cardiac team explained JD potentially had an ASD, VSD, Aorta Coarctation, and Pulmonary Stenosis (need to jog your memory check out Medical Jargon and JDMedical Updates). And yet, JD pulled away with only one - ASD, the least complex of the list. Surgery would be planned around 2 years old if the hole had not closed on its own. Waiting 2 years allows the ASD to close without intervention. After 2 years of age it is less likely the hole will close without surgery.

Refresher – Atrial Septal Defect (ASD) is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. Many times an ASD is considered minor as it can close on it’s own or people can live a long, healthy life with a small ASD. As the Cardiologist grandfather of one of our NICU buddies said “if you are going to have a heart thing an ASD is the one you want.”

History – During our cardiology appointment in September 2012 the ECHO showed JD’s ASD was not growing yet not getting any smaller. As he was growing it was growing proportionally with him. At that time they noticed higher pressures on the right side of his heart. The original surgery timeframe moved up from 2 years old to around his first birthday with a few checks in-between.

Present – In January, we had a follow-up ECHO with the cardiologist. Once again, the hole is growing proportionally with him. During the ECHO the doctor pointed out JD almost has what is called a common atrium – meaning he almost has no wall separating the two sides of the heart.

What does that mean? With a hole (large or small) there is a risk of the blood from the right side of the heart flowing directly to the left side of the heart without getting oxygen from the lungs. The diagram below may help for those who are more of the visual type. I am currently hording this information in my head and I need to relieve my brain. Science geeks this one if for you. . .

The blood in need of oxygen comes into the heart through the right atrium down to the right ventricle and out to the lungs to “fuel up” with oxygen. Once the blood is all pumped up it goes back to the heart through the left atrium down to the left ventricle then out to the body. In JD’s case some of the blood in need of oxygen comes into the right atrium and immediately flows to the left atrium down the left ventricle then out to the body without fueling up with oxygen. As you can imagine it’s not ideal having non-oxygenated blood flowing back into the body.

The larger the hole is, the more the blood can escape from the right side to the left side without fueling up in the lungs. I will say it again, JD’s hole is extremely large.

Cardiac Catherazation – Coming out of the cath lab we would be faced with 3 different paths.

1- The pressures in the heart and lungs would be fine or slightly elevated allowing the surgeons to close the hole completely at a later date.

2- The pressures in the heart and lungs would be elevated to a point where the blood would still need an outlet. Therefore, they would close the ASD but leave a controlled hole to relieve some of the pressure.

3- The pressures in the heart and lungs would be extremely elevated resulting in potentially serious complications if the ASD was closed.

Prior to the cath, Dr. Cardiology believed it would likely be scenario #2 allowing the surgeon to safely close the hole while leaving a small outlet for the pressure to escape.

Bonus News: Similar to the Ying & Yang of the cleft and his breathing, JD has once again created an advantageous balance. JD’s large atrium hole in the heart has created a passageway to help alleviate additional pressure buildup. Without that outlet the pressure could have potentially elevated to dangerous levels. Little munchkins are absolutely amazing.

Breaking News: After the cardiac cath lab we received updated news from the doctors. I must admit I was hoping the doctors would come back with straightforward slam-dunk information. Either all systems go for the heart surgery or let’s put the breaks on the surgery. However, as in life, the answers were as clear as the Chicago River.

The cardiac cath lab showed the pressures in his heart and lungs were good, the Pulmonary Value was fine and the overall function was strong. Actually, the picture looked better than the doctors originally imagined. Given this information, surgery to close his ASD would be very straightforward and very doable. There are still many risks with open-heart surgery (which is what this would be) but not doing the surgery leaves JD open to many more risks throughout his life. I wish that was the end, the last period. More pros in the surgery column with a long list of cons in the no surgery column. BUT . . . there is always a but.

While the surgery itself would be straightforward (baring any surprises) the “aftermath,” as the doctor called it, would be a bit more challenging. During surgery he would have to be on a ventilator to give his lungs assistance breathing. Given JD’s medical complexities weaning off the vent can sometimes take a few days. The longer on the vent the lazier the lungs can get (just like me when I skip the gym for a few days . . .okay months) making it harder to breathe on their own. This can then lead to a host of other issues which is too exhausting to think about.

Now our list of pros and cons for surgery vs. no surgery is starting to even out making the decision more difficult. Not that any decision to have your child undergo surgery is easy but when the pros stack up on one list it makes the decision a tad easier.

Over the next few weeks we will meet with the doctors to discuss in further detail our options and what it means for JD. Our goal from day one is to ensure JD has the longest, happiest, most comfortable life we can give him. From the beginning Nate and I have vowed to go into each decision with no regrets. Some may (and have) question our choices but until a parent is faced with the toughest questions ever asked of them please support any path God leads us down.

Keep the prayers, love, smiles, and support coming for JD. Our little superhero continues to astound the world.

Happy St. Patrick’s Day – my favorite American-made holiday.