Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

aorta coarctation at birth/ heart defects

melanie9392
0 Recommendations

My daughter was diagnosed with a coarctation In her aortic arch by ultrasound which was confirmed shortly after birth. I was told that once they allowed the patent ductus to close she would require open heart surgery to open the coarcted section. Later it was decided that surgery was not needed because her ductus had formed on an angle and when it closed it pushed the aorta open. I'm worried that she should have had the surgery. I just cannot believe that my baby whom I feared for so much is fixed. I'm so scared something will go wrong. The cardiologist said he's never seen this fixed without surgery. Any one with similar stories or any info on coarhctations? needed because when p

Explore topics in this discussion:

Dizziness Surgery Pain High blood pressure Stress

9 replies

Brayden123

I work at a large pediatric icu in Chicago and work closely with cardiologists and cardiovascular surgeons. I will be at work tomorrow and I will ask about this for you! Hang in there I'll try and have more info tomorrow!!

Brayden123

Ok this is what I found out from the head pediatric cardiovascular surgeon at my hospital. He said from just what I explained to him (without seeing an actual echo) that it is usually happens the other way around. Once the PDA closes the coarctation becomes evident (he said he never heard of a coarctation opening after PDA closed and he is a world renowned peds cv surgeon). He said if there is no coarctation now there probably never really was. If you want to be sure you can get a second opinion, it may put your mind at ease. Hope this helps a little! Good luck!!

melanie9392

Thank you so much. It means a lot that you went out of your way to look into that for me.

mresset

One of our sons was born with a coarctation of the aorta (identical twins born at 27 weeks). We have really been through the ringer with this thing. Like you, they also told us that he would definitely need surgery to repair the defect. To get the best results, they wanted to wait until he was 2500 grams to do the surgery (born at 900 grams). He had echos every 2 weeks while in the NICU to monitor the condition. The defect got better at every single ultrasound and we thought we hit the jackpot. Then at his last echo the day before discharge, they found that his coarctation had now gotten worse and were promptly scheduled for surgery. It was very disheartening for us and quite a shock because this turn for the worse came out of the blue. We thought we were going to be bringing him home the next day... not send him into surgery.

The cardiologists described to us that after his PDA closed, a little bulge remained near that area allowing the blood to keep moving freely around the coarctation. As they grow, that area starts to turn into a normal aorta and the coarctation starts interfering with blood flow again. To make a long story short, he didn't end up having surgery at that time. They put him under anesthesia and were about to make the cut, but once he was sedated, the blood pressure differences weren't enough to warrant surgery. That was back in March. He was monitored very closely all summer. We had a heart cath procedure in June to get a better look at his defect. The results showed that he still had a narrowing in the aorta, but that he still didn't need surgery. The hope was that the narrowing would grow with his body and that he wouldn't need to have anything done until he was a teenage or adult. We had a happy and healthy summer thinking once again we hit the jackpot.

Fast forward 3 months to September. We went in for a routine echo and follow-up with our cardiologist and found his blood pressure in his upper body was off the charts high and the blood pressure in his lower body was REALLY low. Once again we were completely shocked and blindsided because he had been growing and eating so well all summer. We had a CT scan done and it showed that he definitely needed surgery, and soon to prevent any heart damage. He ended up having the surgery 3 weeks ago at age 7 months corrected. He had ZERO complications and recovered like a champ. His incision site is healing so quickly. Babies are amazing in their ability to recover quickly. We can already notice a huge difference in his strength and appetite. He had fallen quite a bit behind his twin brother in both weight and development so we are hoping he will now start to catch up a bit.

I know you are scared and wish you didn't have to deal with this, but with as much stress as we have had with ours, we are still happy to report a very successful outcome. He is still taking some medication for high blood pressure as his heart is getting used to not having to work so hard to push the blood through that narrowing anymore, but he is already off any pain medication. He makes me feel like a complete wuss for ever complaining about any pain from my c-section incision... hahaha.

If you want more details, you can read our history here. http://www.caringbridge.org/visit/sjerventwins or e-mail me separately through that site. I think my e-mail is posted there somewhere?

My only advice is to make sure you keep any cardiology appts down the road to keep on top of it. The PDA closing may have only temporarily "fixed" the condition as it did for us. Even if you do need the surgery down the road, any time you are able to buy is good for your daughter. She will only continue to get bigger and stronger and will recover better the longer you wait... unless it gets to a point where her heart is working too hard... then you need to fix the problem. As others told me when we were going through all this uncertainty, "at least the problem is fixable." The pediatric surgeons are amazing.

tkitty

I'm glad the surgery went well. I say if anytime is the best time to get a surgery..it's when you are an infant. That way you don't remember it.

M-and-D-Mommy

Hi,
I would get a second opinion, if you are not comfortable with what the current doctor is telling you. Can't have toooo much info about this type of thing. Keep us updated:)

Brayden123

As weird as it sounds surgery as an infant is easier. I agree that you should get either another opinion or frequent echos with your cardiologist.

melanie9392

They want me to bring her for echoes every 6 months. Just seems like a big time gap. A lot could happen in 6 months!

mylilmansmom

Hello...I am new to this site, I have a wonderful 10 yr old boy and he had coarc of the aorta and had surgery when he was 1 1/2 yrs of age. He recovered great and was out of the hospital in 2 days. Thank you Jesus!! Anyway, we have been going every year to the cardiologist for his yearly checkups and 2 yrs ago the doc wanted him to go for a stress test. There was a gradient between the arm and leg of 18 and he just had another stress test a couple of weeks ago and the gradient this time was doubled to 43. I am so worried that he has to have surgery again or even catherization. I am SOOOO worried! He is very active, is on 2 basketball leagues and is very very athletic, he shows no signs of shortness of breath, his BP is normal and no dizziness, nausea or anything of the sort so I am puzzled that this might be happening all over again. He will be getting an MRI done in the next week. Any word of advice would be great!

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You