Help! Pectus excavatum? (sunken chest) - Mothering Forums

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#1 of 14 Old 04-22-2008, 06:27 PM - Thread Starter
 
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Hi mamas, our doctor gave us the medical term for my 4 month old ds's sunken chest: Pectus excavatum (a fairly minor case). She scared the bejeezus out of me by saying she's going to refer us to a surgeon once ds is 6 months old to get a steel rod put in his chest. I asked why, she said in severe cases it could hurt lung capacity, in minor cases the surgery is similar to plastic surgery - it's just to make him look "normal." I'm all for a wait and see approach - I don't want cosmetic surgery on my baby (if it turns out to be medically necessary that's a different story). DP doesn't want ds to be ridiculed later in the locker room. He also thinks it would be better to do surgery now "since ds won't remember the pain." I don't necessarily agree with that last part, but I do want to hear from mamas who got the surgery for their LO's early, and from mamas who did not. And from those who did something other than surgery - from my brief research (we only found out today), I know there are less invasive techniques. I have also read that it might get worse during rapid growth in the teen years. Does that mean we'd have to do something else then?

I'd also really appreciate any comforting words you might have. DP is quite distraught, and I'm putting on my brave face but am also worried for our little guy. I just want to do what's best for him. TIA

Mama to DS (12/11/07) and partner to DH (08/08). Expecting #2 late November 2011!
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#2 of 14 Old 04-22-2008, 08:30 PM
 
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My cousin had the same condition, and his parents took a "wait and see" approach. He did end up needing surgery (steel rod inserted) at around age 13 because his heart/lungs were being affected. I hope that doesn't scare you, and I hope that isn't the case for your ds. Just sharing so you're aware that the condition can change as the child grows.

From a health viewpoint, the surgery was a complete success, and my cousin was thrilled with the cosmetic results. I do remember that he had a highly specialized procedure and travelled out of his home state for the operation. My aunt/uncle waited to see how their son's chest would change as he grew (the heart/lung issues weren't apparent until adolescence), and also to see how *he* felt about how he looked. He was actually quite self-conscious, so they might have gone with surgery for cosmetic reasons alone. If you have any specific questions, I'll be happy to ask my cousin. All the best to your ds!
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#3 of 14 Old 04-22-2008, 08:55 PM
 
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I have nothing to add, just wanted to send you a and another for dad
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#4 of 14 Old 04-22-2008, 10:46 PM
 
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I'm pretty sure my nephew had this condition. His Dad (BIL) is an ob/gyn and his Mom was a nurse and is now a peds NP. They opted to wait and see and I"m pretty sure he never needed the surgery.

I hope that helpds and good thoughts & vibes for the health of your baby.
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#5 of 14 Old 04-28-2008, 04:03 PM
 
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My dad has this. I don't think they usually did surgeries so easily back then. He never needed anything - he's perfectly healthy and still riding in bike races in his 50s. I always idly wondered why his chest looked like that, but it always seemed like a variation of normal to me. *shrug*

I would personally not want any surgery for me, my child, or anyone, unless I was certain that it was necessary. And if I were convinced that the surgery was needed, I'd still want to wait as late as possible. Maybe a baby wouldn't remember the pain, but pain isn't really something you can avoid in life anyway, and babies are more fragile than older children. (Surgery scares me, but things would most likely be fine.) As to the "locker room" argument - maybe that's something your son would like to decide for himself when he's older?
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#6 of 14 Old 04-28-2008, 05:59 PM
 
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wow. I'm shocked she is suggesting surgery!!

My older DS (2.5) has it and our Ped has never said anything about surgery! In fact he's never expressed any concern about it. He said it is often inherited (FIL has it, too). And that its basically cosmetic (his is mild, though noticeable to me). He said in rare cases it can cause pressure on the heart/lungs but he wouldn't worry about it.
I've occasionally wondered if DS will be self-conscious about it when he is older but unless it was medically necessary, I would NEVER consider surgery for it- espacially as a baby! I think its actually one of those things thats more noticable to the person (or the mom ) than everyone else.

ETA - if DS decides at some point during adolescence that he would like cosmetic surgery for it, we would consider it, but only if HE chooses.
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#7 of 14 Old 04-28-2008, 06:46 PM - Thread Starter
 
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Thanks mamas. We are switching pediatricians - hopefully the new one won't be so alarmist. We're also going to wait on any procedures until it either becomes medically necessary or ds is old enough to decide for himself.

Mama to DS (12/11/07) and partner to DH (08/08). Expecting #2 late November 2011!
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#8 of 14 Old 04-29-2008, 11:59 AM
 
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I hope you are able to find a ped you're happy with. I remember when I first noticed the PE in DS I started googling and came up with all kinds of scary stuff. When I brought him into the ped and asked about it, his reaction really served to ground me. He was really nonchalant about it and just told me what it was (gave it a name: pectus excavatum..which I'd already fighred from the googling ) and basically told me not to worry about it. later, I realized DH father has it too (and he's almost 70 and leads a VERY active lifestyle- two months ago he was alpine skiing in the rockies, and right now he is down in costa rica)- he's had quite an adventurous life so I know it had no detrimental effect on him!
Anyway, I just wanted to offer you some and hope you don't have to worry about this. I really had to think back to when DS was first diagnosed (around the same age as your DS) and I recall feeling really worried and almost ashamed, like maybe I'd done something wrong to cause it fast forward to now, and I barely notice it its just part of who he is. I hope that it is never something that causes him shame or embarrassment (or complications)Our babies are perfect the way they are
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#9 of 14 Old 04-29-2008, 04:52 PM
 
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My DH has this and it has only ever been an aesthetic issue, he is quite athletic and has no problems with lung capacity or anything. Nothing was ever done for it.

He whines about it occasionally from an aesthetic perspective, but to be honest I never would have noticed it if he hadn't pointed it out. I doubt he ever had any locker-room issues over it.

Postpartum doula & certified breastfeeding educator, mama to an amazing girl (11/05) and a wee little boy (3/13).

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#10 of 14 Old 04-30-2008, 09:58 PM
 
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I had a severe pectus excavatum, and my 13-year-old son now has a serious one. I had surgery as an adult. My heart was completely displaced into the left side of my chest, and my right ventricle was not operating properly when I exerted myself and my lung capacity was reduced. We also were diagnosed with a connective tissue disorder, Marfan Syndrome. DO NOT listen to your pediatrician. This surgery is not done on infants or even young children, at least not that I have heard of. Most children are operated on in early adolescence and, in children with connective tissue disorders, surgery is sometimes postponed until the growth spurt in late adolescence. I grew up with a pediatrician who said two stupid things: 1. I was causing this by slouching, and 2. when I became an adolescent and grew breasts, you wouldn't even notice it!! BOTH ARE FALSE, mine developed from age 9 or 10 and worsened even into my 30s, and mine interfered with breast development, so I had no breasts to speak of ever. Slouching does not CAUSE PE, it is a result of it. I have had my own issues with pediatricians with my son. I was told by my now regular doctor, that the amount of information given to them in medical school regarding PE was the equivalent to around a paragraph or two and this is the crux of it: Pectus excavatum is cosmetic and causes no problems.
THIS IS NOT TRUE, at least for many people. PE can cause heart displacement, right ventricle compression, lung capacity reduction, increased respitory infections, shortness of breath as well as psychological issues from having a serious deformity. Find another pediatrician, see if they feel you should have your child checked by a geneticist for a connective tissue disorder (there would be other physical anomalies or illnesses, but many would not show as an infant-I did not have a caved in chest as an infant, mine developed over time) Do research, but there is conflicting info so you will have to just do your best to sort through it! let me know if you have any questions. For now, you will just need to monitor your child, and when they are older, if the deformity progresses, make sure that you don't just rely on echocardiograms-a stress test is necessary as well as lung capacity test, to see if there are problems. My echos were normal, my exercise stress test was not.
Take care.
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#11 of 14 Old 05-03-2008, 02:03 PM
 
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I have a close friend with PE and he attributes it to a zinc deficiency.
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#12 of 14 Old 05-03-2008, 03:44 PM
 
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No, PE is not from any deficiency. It is genetic, and people are born with it, as all of the explanations of families carrying it show on this thread. Marfan's is a serious genetic disorder which is associated with it.

Hope the OP finds a good ped who wants to wait and see what happens with your son's heart and lung function before suggesting surgery.
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#13 of 14 Old 05-03-2008, 09:32 PM - Thread Starter
 
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thanks again, mamas. uwsupergirl i pm'd you.

Mama to DS (12/11/07) and partner to DH (08/08). Expecting #2 late November 2011!
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#14 of 14 Old 11-27-2013, 09:46 AM
 
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Hi,

I read your post and wanted to share my story.

My son was born with a Pectus excavatum (sunken chest).  The doctors told me everything was fine and not to worry.

About a couple of months ago he started complaining of chest pain and said "that it felt that it was his heart". I took him in to the doctors and they performed a ECG and that was when the bad new came.  My sons heart is not beating properly because of his sunken chest, his heart is growing but there is no room in his chest for the growth.  This is causing his irregular heart beat, now I am told that I have to take him to a specialist.

My son is 11 years old.

I recommend that you get a second or third opinion.

 

Regards,

 

Kenia

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