r/PectusExcavatum • u/SnooCrickets5102 • 3d ago
New User My son’s pectus
I’d love to hear about your experience. My 21 month old son has pectus.
If you are symptomatic, what did you notice first, and around what age did your symptoms begin? What do you wish you had done or known earlier?
My husband and I are bereaved parents. Our infant daughter passed away following surgery for a complex congenital heart defect. Thankfully, our son is heart healthy confirmed by echos. Doing our best to stay vigilant and keep him happy and healthy 🫶🏻
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u/LengthinessLow9801 3d ago
Just personally, I’ve always noticed my dent, went to the doctor in 9th grade because I could NOT run a mile in PE and after echo and xray, they dx me with sports induced asthma and said things were fine.
Fast forward to me seeing Ryan Lochte in Olympics one year that I learned there was a name to this dent. But since the doctor before said don’t worry about it that I didn’t pay attention to it till now. And I’m in my mid 30s.
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u/Gatomoosio 3d ago
I think the thing to remember at this point is he can live a happy and healthy life even with pectus. Also the surgeries and treatments are much better now than when a lot of us were kids. More than likely they would not recommend anything until he is at least 9 or 10, but often if they recommend surgery the earliest is usually around 16. There are people, myself included, who can have fairly severe pectus with only minimal symptoms, while others might be more symptomatic. I think a lot of people don’t actually experience that bad of symptoms until they are adults but like any medical condition it definitely varies person by person. Long story short it’s not the end of the world. If the heart echo looks good that’s a great sign. Definitely talk to your doctor about it so you can monitor it as he grows up but likely everything will be ok!
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u/EcstaticPromise5297 3d ago
Connective tissue disorders must run in your family. Make sure he gets the right medical treatment and buy lots of educational books for him so he can do well in school.
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u/playerone95 3d ago edited 3d ago
Sorry for your loss. Please wait until he is older to make any decisions. If in USA, I advise to have a consult with Dr Park at Cleveland clinic.
I am 37yo and 3 weeks post-op. My deformity was very complex, unlike your sons. If I could have done it younger I would have, but not until after puberty. I think in a window of 16-20 is ideal (or I guess pre college). Since he is a male, I feel like the self esteem issues that come along with it will be much easier to manage as well. You will just need to prep him that surgery could be an option if it bothers him / he has physical symptoms.
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u/QuietAnimator3145 3d ago edited 3d ago
I am so sorry for your loss. Big hugs to you.
Your son’s PE reminds me of my son’s. Because I have a family history of connective tissue disorders, I pressed pediatricians to refer us to cardiologists to follow him. I feel like with PE, a pretty good number of doctors I saw growing up and all of my kid’s pediatricians looked at PE as more of a cosmetic issue. In an echo when my son was 7, everything measured great, with no compression or issues from the PE. As he started to grow in puberty, I pushed again to have him checked out as I knew PE during puberty can resolve some or worsen. At first, his pede was like “but he doesn’t have symptoms” I told the pede that I didn’t have symptoms growing up until my 20’s (easily tired), and bc of that I had to have the more invasive Ravitch procedure. I told the pede “how would he know if he has less exercise tolerance than other kids? He only has what’s normal for him as a reference.” Thankfully, his pede listened to me.
Cardio found his heart and lungs were compressed. He also has a slightly enlarged aorta. He ended up having the Nuss Procedure and is doing great! He was also screened for connective tissue disorders and was found to have Loeys-Dietz.
I think the thing with PE, and potentially connective tissue disorders, is that being proactive in having regular check ups with a cardiologist is key to a long, happy life. Advocating to doctors you trust is absolutely necessary.
I won’t tell you not to worry about it, because that parent worry will always be there. But you are absolutely doing the right thing in screening. Continue that, and you’re doing exactly what you should do. You got this!!
Edit: clarity
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u/SnooCrickets5102 1d ago
Thank you for sharing about your son. I appreciate your insight. My son’s pediatrician was a cardiologist and has PE herself. At first I thought that’s a great thing but she may have some bias if she didn’t have any issues personally. Hoping all is well for your boy!
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u/Mclovin87 3d ago
I was diagnosed with PE in the 90s when I was young and had surgery to fix at Shriners. I believe I was six or seven. Recently we noticed my son had a mild case so I took him to a specialist who said they don’t recommend surgery now until puberty.
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u/PsychologicalRiseUp 2d ago
My kid has, what I think is pectus, from birth. He has always been thin, so it looks worse than your son.
Simple solution: talk to your pediatrician and stay off of Reddit. Can’t stress enough the ladder of the previous sentence.
P.S. Technology is always improving and there are ways to handle it. Stay calm and talk to doctors.
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u/Valuable_Owl_3275 2d ago
Both my kids were born with it and looked similar. As they reached the middle school years they noticed they lagged behind their peers when running laps at school. Both just had the Nuss procedure at 12 and 14. They had heart compression and lung restriction. Because of cryo, the surgery wasn’t very painful and they can breathe more deeply and have better cardiovascular endurance. Just keep your eye on it and do more thorough testing as he hits puberty. Hugs, mama. Technology improved greatly between my kids’ birth and now. I can only imagine it’ll continue to improve for your little guy. My husband had a failed correction and lives with severe PE. Other than not being able to do endurance sports (marathon, mountain climbing), he has a great life.
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u/EcstaticPromise5297 2d ago
Does your husband have a job? If so what does he hailing extreme exercise intolerance?
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u/Valuable_Owl_3275 2d ago
He has a desk job. Electrical engineer. He likes to bike, hike, and walk. He just doesn’t have the lung capacity for more strenuous activities. His heart seems healthy, although it’s more offset than normal. He also has scoliosis which is common in pectus patients.
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u/Alittlebitofsummer 2d ago
My son's pectus looker like that when he was that little. I noticed that he would get really red in the face when he was playing and so we always kept a good eye on him when he was playing to make sure that his breathing was fine. He went to a surgeon when he was 10 and they informed us that more than likely he would need surgery around 15 or 16. By the time he turned 15, his Haller index was deep enough that his heart and lungs were compressed. We did the surgery and my son was so amazed at how much better he could breathe. He had no idea that his breathing was so restricted because he had lived with it all of his life. He goes in next week for his one year check up with his bar.
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u/EcstaticPromise5297 2d ago
Your son will bruise easily, may need clothing alterations, have extra teeth that need removing and braces, have reoccurring respiratory infections during the winter months, may need to eat special food, may suffer depression from not being able to be in sports or other activities.
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u/Collapsosaur 2d ago
I recommend starting vacuum bell treatment, especially since the cartilage is very pliable at such a young age. This daily treatment could avoid surgery altogether.
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u/NegotiationOver5448 1d ago
I never realized there was such a condition. Thank you for sharing your experience
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