If you haven’t seen or heard about it, Jimmy Kimmel just shared a monologue about his son being born with a congenital heart condition. His son was born a few weeks ago and diagnosed with Tetralogy of Fallot. Hearing Jimmy talk about his son made me realize I never shared our story.

What is Tetralogy of Fallot?

It is a heart defect that features four problems.

• a hole between the lower chambers of the heart
• an obstruction from the heart to the lungs
• The aorta (blood vessel) lies over the hole in the lower chambers
• The muscle surrounding the lower right chamber becomes overly thickened

My son’s Tetralogy of Fallot story

Well when I delivered my first child at the young age of 25 years old, I was told he had a heart murmur. Being so young and having no one in my family ever having any health issues, I was clueless as what that meant. I was overwhelmed with joy in the hospital after having my son and all the nurses and doctor said that most babies are born with heart murmurs but they usually go away.

So in a month my husband and followed up with a pediatric cardiologist. He performed an Echocardiogram and EKG and came back into the room saying very bluntly that our son has Tetralogy of Fallot and will require heart surgery.

Queue the walls caving in and sky falling…

Don’t get me wrong, I loved our doctor and his direct approach. He didn’t beat around the bush which honestly would have made us more worried. He made it sound as if our son’s heart defect was no big deal and the surgery would be routine. He was comforting us by not freaking us out over how rare his condition actually is.

We were told he had no restrictions but should look for symptoms of extra fatigue, not eating and turning blue. Our son was born at only 6 lbs. and was never a good eater, which the doctor explained that drinking a bottle was like running a marathon for him. Basically, he grazed on bottles all day long.

Fast forward to when he was 4 months old and my cousin, who was a paramedic, said our son had a tinge of blue to his skin. I honestly hadn’t noticed it since I saw his every day and it was a very faint blue. So after a panicked call to the doctor, he told us to go to the ER at the children’s hospital. The blue meant that blood flow was being limited to the lungs.

When blood flow to the lungs is restricted, the combination of the ventricular septal defect and overriding aorta allows oxygen-poor blood (“blue”) returning to the right atrium and right ventricle to be pumped out the aorta to the body.

This “shunting” of oxygen-poor blood from the right ventricle to the body results in a reduction in the arterial oxygen saturation so that babies appear cyanotic, or blue. The cyanosis occurs because oxygen-poor blood is darker and has a blue color, so that the lips and skin appear blue. (From Cincinnati Childrens)

We drove to the hospital expecting to be home in a few hours due to us overreacting. Well we stayed that night and 14 more nights. Our son was admitted to the hospital and added to the surgery rotation. Being overwhelmed as it was to be new parents, now we were thrown into the hospital with our teeny tiny baby.

Those were the hardest two weeks of my life but everything worked out. We came home with no restrictions other than to take it easy for six weeks. Luckily our son was a baby and didn’t do much anyways! Amazing how he had such a small scar.

We have had regular checkups ever since and multiple MRI’s since and the time has come that he needs his next surgery. Our doctors have been amazing and thanks to the amazing technology of today, we have had 10 years of no surgery.

Oh and he has had NO restrictions, which is amazing in itself, although I admit I wish he didn’t choose hockey as his sport…

Next month though he will be having open heart surgery. The doctors had hoped they could do a less evasive surgery which would mean quicker recovery but he needs open heart surgery. Basically, they have to break his breastbone open to work on his heart which will be pumped for him by a machine.

Yes, I am scared, yes I am panicking inside, but no I don’t show it. Freaking out on the outside would not help anyone and would cause my son, who is already nervous, to freak out even more. My husband and I were very open with him about what is going to happen and how he has an amazing set of doctors who will be working on him. Actually, the same surgeon team that is going to be working on him is the team that performed his surgery at 4 months old.

So all your thoughts and prayers would be appreciated for my not-so-baby-anymore boy. We were told the surgery would last 5 hours and he will need to stay in the hospital for 3-5 days, then about 3-4 weeks recovery at home. He will also have to be careful of strenuous activity for 8 weeks since his breastbone will be healing. The surgery is routine though to the surgeons and I have faith in their expertise.