Hi Everyone,
I am a 26-year-old male, had an end-to-end COA repair at 9 years old. I do have high bp but its managed at a healthy level and also do have a bicuspid valve. I have regular checkups and a recent MRI that showed I was fine. However, I am preparing to start a family within the next few years. Should I worry that I will die on the younger side (50 or 60)? Do people with COA repairs ever live into their 70s or 80s?
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How long (and how well) can a person expect to live, given they present coarctation of the aorta and successfully undergo surgery during the first few months of life + another successful surgery at 17 to replace a stent?
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What are her chances to carry a child through pregnancy?
Currently taking blood-thinning medication for it twice a day...
Excuse my imprecision with medical terms and procedures, I'm not educated on the topic.
I am in urgent need of an answer. Thank you <3
Hi! I am 34 weeks and baby was diagnosed with several heart defects at my anatomy scan. We have family history of HLHS, but thankfully baby doesn’t have that. I’m surprised (but understand why) at this point in pregnancy that we don’t have a firm diagnosis and was wondering if anyone else was in the same boat and what your experience was. As of now baby’s heart appears to be functioning ok despite some weird anatomy. The primary concern is whether there will be an arch obstruction at birth that would require immediate surgery. I’m delivering at a hospital that can perform the surgery without transfer, but the uncertainty is killing me!
Has anyone experienced this with their yet to be born offspring? I just got the news and my wife is due in January and they say we are looking at multiple surgeries starting in the first weeks and then within 6 months. I'd love to just talk to someone who has been through this (good or bad) to try to wrap my head around it. Thanks, Reddit!
Firstly, I'm not sure if this is allowed here, if not, apologies.
I'm a medical student on their intercalation and I'm writing about a neonatal specimen from my university. I've tried contacting my professors but I haven't had a response yet so I'm making this post.
My specimen has tubular hypoplasia with coarctation of the aorta. I was under the impression we want to maintain the ductus arteriosus in CoA, until the patient is stabilised for treatment. However my specimen has it ligated, with untreated CoA. Would anyone be able to provide an insight into why this may have happened? I havent been able to find anything so far myself, and I'm quite confused about this.
The sequential segmental analysis is normal (concordant AV, VA, usual AA), and there is also a small ASD present along with a bicuspid aortic valve.
Thank you!
Howdy all. Just kind of introducing myself... I'm glad this sub exists, and I hope it grows.... Adult CHD patients can benefit a lot from community and sharing knowledge... so just sharing my experience.
I have pectus excavatum. Not technically a heart defect, but is associated with aortic coarctation and bicuspid aortic valve, both of which I have. My pectus is not especially severe, and it's symmetrical.
At various periods in my adult life, including the last year or two, I've had bouts of panic disorder / anxiety related to my heart. I think this is mostly somatic, or must be, based on the results of my cardio workups. I tend to be a voracious researcher, and so I think my mind has just laid down pathways to "there's something wrong with your heart" and therefore I'll be really sensitive to benign things (PVCs / PACs, both of which I have to a normal degree), and I'll feel a lot of chest/neck/arm/back pains of different degrees, sometimes at rest and sometimes with a stimulus (working out, a stressful situation).
I'll go through what is known of my heart. The one thing I would say from the top, which is very important to all of us... ***go to an adult congenital cardiologist*** not just a normal cardiologist (or, go to a normal cardio, but now and again have a specialist keep tabs on you. This is a specialty within a specialty, so to speak. And if you have something like a coarctation repair, it's extremely helpful to go see someone who actively manages dozens of people in a similar boat to you.... that doctor will have insight and feel that may be much better than a general cardio. A couple years ago I started going to the adult congenital team at NYU Langone... I'm super lucky to be able to access them. Anyway, here's what I have:
- BAV. There's a third partial leaflet. Fortunately my regurgitation has always read between trace and mild. I'm told if you screen a ton of random people, many (maybe most?) may show some trace regurgitation. But as I understand it, the amount of regurgitation is what can possibly lead to heart disfunction and/or eventual aortic problems (valve or aortic morphology changes as a result of a change in flow dynamics due to the abnormal valve structure).
- Coarctation. I had my coarc repaired at age 7 (1992) via an end-to-end anastomosis. From what I read, anastamosis has much better outcomes than some others (they used to use dacron patches, which were prone to eventual failure). I recently had a 3D aortic MRI,
Hi everyone,
Thanks in advance to everyone in this sub for taking the time to read this. I’m really glad to have found this group.
I’m currently 29 + 4 with an IVF pregnancy, and had a routine fetal echo today as IVF pregnancies are at higher risk for congenital heart defects.
The dr. explained to me after the echo that while all the measurements are normal, when she did the doppler, the baby’s blood flow was abnormal. Essentially the blood “hung around” the area of the aorta distal to the ductus arteriosis, making her believe that there was a probable coarctation of the aorta.
She gave us the entire realm of possibilities from NICU stay and observation to surgery is his first week of life. I guess I’m just wondering if anyone else has been through something similar and would like to share their experience, or if anyone has any suggestions on how to prepare for a NICU stay.
Thanks again.
I got a stent put in as an adult. I'm told by cardiologists my life span is fine but every study I come across says 38. For example, https://pubmed.ncbi.nlm.nih.gov/2791247/, says 38 even after fixed. I don't know who to trust because part of me thinks asking the cardiologist they're just going to lie and say the lifespan is normal whereas a study is going to be straight to the point. I can't find enough information on this.
Original post: https://www.reddit.com/r/BabyBumps/comments/e8jtnv/its_surgery_day_coarctation_and_hypoplastic/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
What a hectic day!! Thanks for all your support and comments. After Kylo was sent on his way to theatre, we left and had breakfast away from the hospital. We spent the day with my partners step-brother and his partner and they did a fantastic job at keeping us occupied and taking our mind off things.
We got hourly updates on Kylo which was fantastic, I couldn’t speak highly enough of all staff here at the Perth Children’s Hospital.
We spoke to the surgeon David, he’s really happy with how everything went - he said Kylos heart is a little bit swollen (this is 100% normal with any major heart surgery) so he’s left his sternum open for now but the wound is closed (all stitched up). There was a bit of bleeding but it’s almost stopped now so nothing to be concerned about. David will close his sternum tomorrow, Kylo will not need to go back to the theatre for this it can be done in his PICU room we are so relieved.
We have seen our little guy in PICU and he is doing great. It’s very confronting seeing him in the current state he’s in but we’re glad it’s been a success.
We can’t wait to hold our little man and better yet, get him home.
Here’s hoping for a speedy and smooth recovery.
My 5 month old daughter was born with Shone's complex and had her aortic coarctation repaired at 7 days old. Since then she's gone in for an angioplasty every 8 weeks or so because her repair just isn't growing with her. Her aortic and mitral valves are growing with her, so that's good.
Her cardiologist and I decided that it was probably best to redo the repair instead of doing a stent since she's so little (though she's growing like a weed!) after her last echo cardiogram on Tuesday (she gets one every other week). The stent would have to be enlarged as she grows with more anesthetic procedures. Plus, they'd have to go in through her sternum to place it anyway, they may as well fix her aorta while they're in there, right?
I'm feeling anxious about the surgery and recovery time. Wish us luck.
Say hello to my little LuLu :)
What is the physiology/physics behind this?
I understand the importance of measuring BPs in both upper and lower extremities, but why do we need to have the patient flip over in order to do that?
This is a recommendation from the 2008 ACC/AHA Guidelines for the Management of Adults With Congenital Heart Disease.
Source: https://www.wikidoc.org/index.php/Aortic_coarctation_physical_examination
Hi all! I'm new to the CHD sub on reddit - I've been posting about my unborn childs possible CHD findings in the babybumps/pregnancy sub. Please feel free to read about it here.
We had our last appointment with our cardiologist on the 16 Oct 2019 (which just so happens to be our 6 year anniversary so I was hoping for a good day and a good scan).
The cardiologist confirmed that baby boys left ventricle had indeed caught up in size to the right ventricle, which is great news. No concerns there at all! He then went on to say that the aorta is still narrow but now, he thinks the ascending aorta is narrow too (first time we've heard this after 2 previous scans)... then he tells us he is concerned about the ascending aorta and whether or not it is fixable?! (This guy is not good with his words - but I find that this is normal with some doctors, perhaps they don't like to be the bearer of bad news but want to be realistic). It felt like he practically gave our child a death sentence then and there. "The aorta is easy, but this *pointing to the ascending aorta on screen* i'm concerned about this, because it looks narrow, and we will need to wait and see if it's....... fixable". His exact quote -.- my partner seems to think he was trying to say "we'll need to see if it requires fixing (after he's born)" opposed to what I translated it to which is.. it's not fixable at all aka death sentence.
He was looking back and fourth at the mitral valve too.. and again he's not sure if it's opening and closing the way it should be. Everything about this appointment was one big ole shrug on his part, we had no clarification after this appointment. He finished up with "we will just have to wait and see when he is born" he couldn't even confirm if surgery is required or not.. but at the same time, I guess it is hard when trying to do an echo through a very pregnant person LOL.
Anyway, we are still staying strong with this one, I have all faith that this will indeed be fixable (if it does require 'fixing'). We've been having scans done by two different doctors (the cardiologist and a professor who done my amnio test) and this is our last with the cardiologist - thank god.
We have another upcoming ultrasound with the professor on the 7th November - he always seems to be a bit more relaxed and positive.. so it will be nice to see him again and I plan on getting a second o
... keep reading on reddit ➡
I‘ve believed that I understood that topic, after reading pathoma. According to Satar, in the infantile type one has cyanosis in the lower extremities at birth (due to PDA), whilst in adult type one would see hypertension in upper extremities with weak pulses in lower extremities. What confuses me is First Aid (Reproductive section on Turner Syndrome) telling, that in Turner Syndrome you would see “femoral pulse < brachial pulse“. But why? I thought Turner Syndrome is associated with the infantile type of the Coarctation and hence the Blood is able to reach lower extremities through the PDA. (The one explanation I could think of, is that the Ductus arteriosus eventually obliterates whilst the Coarctation persists. Would that be possible?)
Thanks in advance for any explanation!
19
M
6'1
185
1 day
Kentucky
Chest
Had open heart surgery as a baby for a coarctation of the aorta
None
I almost never do drugs but this weekend for some reason I thought doing several stimulants and drinking to excess was a good idea and I was horribly hungover yesterday. Then today I have felt like I have had a weight on my chest all day and now I am trying to sleep but am having shortness of breath. My pulse is 52 bpm which I know is a bit low, but my pulse has always been low. I have a weird pain right in the middle of my chest that feels almost a bit like a bruise or a strain when I stretch out my chest but there isn't really a mark but I cannot remember anything I would have done to hurt this. Could I have messed something up with my heart? Is a relapse a thing? I had my yearly check up 2 months ago and everything was fine.
From what I gathered from uworld is that
Coarctation: BP difference between upper and lower extremities in children and adults
In neonates: heart failure after ductal tissue collapses. Differential cyanosis if ductus arteriosus remains patent.
So according to the question in UW the child was 10yrs old. Should I assume that's also a clue since the child is old enough and coarctation is more likely.
PDA : cyanosis with cubbing. Cyanosis prominent in lower extremities. No BP/ pulse discrepancy
Any other clues I should look for?
Hey everyone! As the title says I just found out yesterday my baby due in August has a coarctation of the aorta and a bicuspid aortic valve. The pediatric cardiologist said he'll have surgery at about 4 days old. I'm a bit in shock and haven't fully processed and very scared. Just found this subreddit and thought I'd see what kind of advice you guys have. There is a support group at the fetal care center. If you went to a support group did you find it helpful and worthwhile? How did you handle the last stretch of pregnancy knowing there was impending heart surgery shortly after birth? I keep telling myself this is a minor issue in the world of heart defects and that his outcomes for the rest of life are very much comparable to that of kids without CHD.
I have older kids at home and while they aren't old enough (2, 2, and 4) to understand what is going on I'm worried about how to divide my attention and time between the CICU and home. I want to be at the hospital but obviously can't just disappear from my toddlers for two weeks straight.
Yes, I know this is crazy.
My son has convinced himself it is his dream in life to be a marine. I'm not sure where this came from, as my time as a marine was 20 years before he was born and is represented by little more than a few pictures around the house.
The problem is, when he was 7 we discovered he had a narrowing of his aorta just past the three major branches. In the short term it caused high blood pressure in his arms and head and pain in his legs. Untreated it would cause early onset heart disease and death.
It was repaired surgically, a wizard of a surgeon (Mark Rodefeld at IU) removed the narrow spot and brought the two ends together. He's been asymptomatic since and the docs tell us that other than being at a slightly higher risk for high blood pressure he should have a normal life.
How on earth do I tell him there isn't a waiver for this? Also, he has a bicuspid aortic valve, which is fairly common in coarcs and also probably can't be waived.
TPR has an example that if the aorta is narrowed, this causes decreased pressure. But wouldn't it increase pressure since the build up of the art would result in more systolic pressure?
How to go about thinking about similar questions as well.
Anyone know the answer to this? I keep seeing that unfixed I'll die before 50 but can't find the life span if it's fixed. My cardiologist said I'll be fine but I'm 20 so I'm sure she's just saying it to not worry me and I want the fucking truth and not a sugar coat it.
2 days ago my unborn baby was diagnosed with possible coarctation of the aorta. Possible, because it´s not sure until birth and also i´m not really far along enough for a very specific heart ultrasound (21 weeks). I´m obviously quite worried and have tried to get as much information out of my doctors as possible as well as searched the Internet but I would like to hear from people who have had experiences with this diagnosis: did the prenatal diagnosis turn out to be correct after birth? did your baby need operation(s)? and all other experiences/knowledge concerning the matter that you have and would be willing to share.
Scheduled for Wednesday, February 15, 2017 6:00 PM - 7:00 PM CST
Subject
Have you ever been told that there is a narrowing in your aorta and/or that your aortic valve has only two leaflets? Have you wondered what all of this means? To help you understand more, you will not want to miss this webinar. Dr. Alison Meadows, a leading ACHD cardiologist, will tell you what coarctation of the aorta is and what a bicuspid aortic valve is. She will also talk about recommendations for treatment of both, what the risks are, why regular follow- up is important and how you can lead as productive a life as possible if you were born with either or both of these.
About the Speaker
> Dr. Alison Meadows has devoted her career to caring for this vulnerable patient population, a mission that led her to join KP San Francisco in 2010. Hired simply to provide office consultations for adults with congenital heart disease, Dr. Meadows instead created a world class ACHD program that provides comprehensive care for 13,000 patients across Northern California – the largest program of its kind in the country.
Has anyone experienced this with their yet to be born offspring? I just got the news and my wife is due in January and they say we are looking at multiple surgeries starting in the first weeks and then within 6 months. I'd love to just talk to someone who has been through this (good or bad) to try to wrap my head around it. Thanks, Reddit!
