Monday, February 1, 2010

Heart Scar

One of the most frightening things parents may ever face is surgery on their baby. It is said that approximately 45% of babies with Down syndrome are born with a congenital heart defect. Many of these defects require corrective surgery. Before you read anything else, know that heart surgery today has a 95-99% survival rate. I can’t minimize the fear and risks involved but it is important to know that these are very common surgeries performed by excellent, experienced pediatric heart surgeons.

The most common defect is a hole in the heart between the two upper and/or lower chambers which allows oxygenated blood to mix with blood that is returning into the heart. These types of defects are called AV Canal (endocardial cushion defect), VSD, and the less common ASD.

The hole in the heart types of defects usually lead to open heart surgery when the baby has gained some weight and grown a bit. The timing of surgery is often decided by balancing weight gain versus the slide toward congestive heart failure (CHF). CHF is the medical term for saying that the heart cannot continue to do its job without the support of medication (lasix, digoxin, etc.) and perhaps oxygen.

While I am talking about such scary stuff, I will also mention there are more rare heart defects that require surgery before a baby can leave the NICU. A coarctation of the aorta is one such defect.

A baby with a congenital heart defect will be followed by a pediatric cardiologist. She will get echocardiograms (a fancy heart ultrasound) and heart x-rays. She might also get an ECG (the test where they stick the wires on her chest and measure the heart’s electrical activity), or even perhaps a heart MRI. All of this information is shared with a pediatric heart surgeon and he will use it to determine the appropriate surgical fix.

When I first heard (at 30 weeks gestation) that my baby would need heart surgery for an AV Canal defect, I was terrified. The sick-to-my-stomach kind of scared. And I had visions of an angry red zipper scar running from the bottom of her neck to her abdomen. When at three weeks old they told me she had a coarctation of the aorta that required immediate surgery, you could have knocked me over with a single breath.

So yeah, I won’t minimize it. Heart surgery is scary for us parents. The first look at recovery is daunting. There are multiple wires and tubes attached, each serving a unique purpose. But, your baby is feeling no pain and she is being cared for by two or more cardiac nurses specially trained to aid in her recovery. You however may need a stiff drink.

The recovery period for a baby is amazingly quick. In most cases, you will be home within two weeks of surgery. Six weeks later, you will stare at your strong happy baby and wonder if it ever really happened. And there it will be, a thin line a few inches long drawn down her chest, the heart scar. The badge of courage and strength, that if kept out of the sun, will nearly fade away over the next few years.


Your Turn
If your baby has a congenital heart defect that requires surgical repair, you may want to take some time to visit the blogs listed under the Sweethearts & Fighters blogroll in the left column. The path is well worn and you may find encouragement and peace as you read through the stories of those who have walked before you.


  1. Oh heart surgery is scary. I tell others that unfortunately, it's something you have to go through in order to keep your precious child. Now, I look back at tht time and smile. I'm so thankful to live in a time where this type of surgery is possible. And the's a badge of courage and a reminder to me that God touched my sweet girl's heart using the surgeon's hands.

  2. Our babes had two holes in his heart when he was born. He had two echos and one ECG. The cardiologist he went too at Children's Hospital said that he was 90 plus percent sure they would be completely closed within a year. We go back in May for a follow up, hopefully he was right! I believe he is fine, no doctor after that has ever said that they have heard a heart murmur and he has been to about 6 different doctors since then. I am glad to know that if something is wrong with the little dudes heart there are other people I can talk too that have been through the same thing :) thanks for posting!

  3. What a timely post! Jace is having his open heart surgery on Wednesday...less than a year after LC's open heart surgery for the same AV canal defect...
    Great always...

  4. Heart surgery is very scary, but our babies are fighters! I just posted Happy Heart Day to my little one on Jan 26th!

  5. great post! I have been "dreaming" of scars these days and wondering what Parker's chest will look like when it is done. Amazing pic! Can't even see it! Praise God for the miracles!! Blessings to you! Lara

  6. My daughter had AV canal heart surgery 3 yrs. 3 months ago. The scar is all but gone. Faded completely. Although you'd be hard pressed to see it as she zips by you at full speed these days. Coco

  7. Our daughters scar has not faded much and is wide, she also had a slight bumpy bone after. We've always called it her love bump. I've adjusted to seeing it but my husband gets really sad still and it's been 5 years now. It's good to talk to other parents that have been through it- wish you all were here when we did!

  8. We found out about our daughters AVSD at 29 weeks and met with the cardiologist at 30 weeks to confirm and talk about her surgery. What I remember most about this meeting was how *not* worried I was about the surgery. The surgeon was upbeat and supportive. I know there are risks and I'm sure I'll be much more worried the closer it gets to her surgery (she's 7 weeks now), but I know she needs this. She also had a PDA repair at 9 days old before she left the NICU and I think this was a good warm up for her OHS.

  9. My son had a complete AVSD at 15 weeks in Aug 2003 in Ann Arbor, MI. He is almost 7 yrs.old and doing great!!!! He is very active and very healthy. See for yourself:

  10. My son had his AV Canal repaired 10 years ago and is doing so well! He is SAD that his scar has faded so much and calls it his "lucky scar"; willing to show it off to anyone! Great Post!


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