A Coarctation of the Aorta with a Side of Ventricular Septal Defect

 Coarctation (ko-ahrk-TAY-shun) of the aorta — or aortic coarctation — is a narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body. When this occurs, your heart must pump harder to force blood through the narrow part of your aorta.

A ventricular septal defect (VSD), also called a hole in the heart, is a common heart defect that’s present at birth (congenital). The defect involves an opening (hole) in the heart forming between the heart’s lower chambers, allowing oxygen-rich and oxygen-poor blood to mix.

So now that we got the medical mumbo jumbo out of the way, I would like to tell you all my story.

When I was born, it was what most would say was a perfect birth; in fact, I basically flew out. I had high Apgar scores and everything seemed yo be A-OK.  The only issue I had was jaundice, which really is not that rare (all three of my girls had it ) and a murmur. Everyone is born with a slight murmur; some close up right away, some take a few months, and some can be so minor that you can live with it for the rest your life. After a few too many foot pokes for the jaundice, parents begged for me to be re-admitted to undergo treatment with the billi lights for five days. When it came time for my six-week well visit, the pediatrician could still hear the murmur. I was nursing normally (my mom did say she noticed that I would sweat during feedings and my upper lip would turn a slight shade of blue) but just not gaining any weight, so the doctor referred me to Dr. Peoples, a pediatric cardiologist.  We had an appointment with him within a few days. He took a chest x-ray and ran an EKG, came back to us with his prognosis, and scheduled me to go to the hospital the following week for a cauterization. I had to go in 24 hours before the procedure so they could put a camera through my groin and up into my heart for a better look. Later that same afternoon, the results were in. They confirmed his suspicions and my surgery was scheduled the very next morning.

Enter Dr. Koopot, my surgeon. When I was just nine-weeks old, he opened me up along the my left side, repaired the coarctation, and put on a pulmonary banding. One of the other signs of a problem was a pulse or lack of one in your lower extremities. I was in surgery for almost three hours, and then Dr. Koopot came and told my parents that I did fantastically and that I immediately had a pulse and perfect blood flow to my lower extremities. I was in ICU for about 24 hours and was doing so well that they put me in a room, where I stayed for about a week. Then it was back to Dr. Peoples to go over recovery and prognosis. My parents were informed that I still had a hole in my lower ventricle and I was prescribed Lanoxin, which could close it in time. I would then have to go back in when I was about two-and-a-half-years old to remove the banding and check on the hole. When I was about two, I thought it would be a really great idea to take the medicine myself. I twisted off the childproof cap and chugged the whole bottle of Lanoxin. I had to get my stomach pumped (I swear I remember that!) and had quite a few side effects from the drug overdose. I was doing so well at that time they decided I no longer need the medicine.

At two and a half, I went back in for my second open-heart procedure and this time they went through the front of my chest.  The surgeon removed the banding and repaired the hole in my left ventricle. I was released from  the hospital after about a week with only two restrictions: no riding my tricycle or jumping on the bed.

I still have a slight murmur and two very large scars. The scar from my first surgery goes across my left shoulder blade and the scar from the second covers more than half my torso. With time, both of my scars have evolved and dimmed in appearance. They can be sensitive to the touch, mostly because there is really no sensation at all. It is a very strange feeling and I get really irritated if they are touched. The main long-term issues I’ve had is with my circulation; my fingernails turn dark grey when I am cold, and I have to take antibiotics before any dental work.

When it was time to get pregnant, there were a few concerns, but the top two were: (a) would my heart be able to handle the increased blood supply and (b) would my kids be at risk for having the same issues? Stay tuned for the rest in a later post 🙂

No Comments

  1. Heather P. -  August 12, 2012 - 10:57 am

    I can’t imagine going through that as a parent let alone as the patient. Thankfully you and your babies are well.

  2. Angie -  August 17, 2012 - 9:24 am

    My daughter has 3 VSD’s and its scary. We are lucky she didn’t have to have surgery! She was closely monitored for her first two years, and even though she still has them, is perfectly healthy. She just lives with murmurs. And every doctor appt, the doctors get medical students to listen to her heart, good learning tool I guess!

  3. Maye Kim -  September 20, 2012 - 8:25 pm

    Hi. Thank you for sharing your story. Last year I had my first child and found out she had a heart defect called TOF (Tretrology of Fallot). She had open heart at 6 months of age and is doing great now. She may have to go through another surgery to replace a valve in heart.
    I would love to hear more about what you went through having your own children as this runs through my head about my daughter some day having her own children too.
    Thank you again!!

    • Risa -  September 21, 2012 - 10:08 pm

      The second installment is posting Monday 🙂

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