Pectus Excavatum - Chelmsford,MA

I hadn't heard of this but with a quick google hit, it looks like there are some relatively easy and non-invasive treatments to help him with this condition. Especially since you said it's very mild.

So look at it from that perspective. He's got it, but it's mild and it's easily treatable to make things normal/ok for him.

My daughter has this. It's not obvious to most people, except to nurses and doctors. I would encourage you to let yourself be a little sad, as that is perfectly normal and human. However, now is the best time to determine the way you will help your son and the rest of your family handle anything that may come up. Find a good balance. I think that's the most important thing. You will feel less sadness when you are informed, prepared and courageous.

By finding a balance, I mean: be informed about Pectus Excavatum, but don't drown yourself in searching it on the internet and don't become obsessed with reading about it. Believe me, it's easy to get carried away. Sometimes Pectus can be the only symptom, and sometimes it can be a component of another diagnosis. Each case is different, so don't jump to conclusions, but be alert. Don't anticipate complications, but don't put your head in the sand either. It's all balance.

I also mean, be willing to talk with your child and his doctor about the condition, but don't make it what your child is all about. Be honest, but don't make it his identity. Don't introduce your child and say "he has Pectus Excavatum" or bring it up in ordinary conversations. But if it increases as he grows, and if it affects him in any way, be willing to be an advocate for him and to teach him to advocate for himself.

Another way you'll need balance is if asked about it by other parents. Be up front about it, have an informed explanation, but make sure that you don't give the impression that it's a tragedy that is overshadowing everything. Don't just pass it off, either (don't say "it's nothing"). Be ready to say "yes, my son has a condition called Pectus Excavatum. It means that his sternum is deeper than most, etc." If they ask you if you're worried, or if they express inappropriate fear or other undesirable comments, be willing to be honest, but take this precious opportunity to educate them. Be ready to say "it's not who he is, or how his life will matter. That will come from a good character and qualities that have nothing to do with this physical difference. Please ask me if you have questions, but treat him like any kid." They may have legitimate questions about how it affects his health, and they way you explain it will determine how they treat him or any kid with any difference, whether visible or invisible.

Strength and wisdom and courage begin at home, and when we as parents have a child with medical issues, we have a very important and challenging goal: to establish how our children will face the world, how they'll deal with their physical limitations, and how they set and reach goals. My daughter sometimes is sad about all she has missed out on (she has multiple diagnoses and issues), but she doesn't dwell on it most of the time. Your son may not be the star football player or a long distance runner, but he will be something wonderful. Embrace it. My daughter has spent so much time in bed and alone in her room that she has learned to take a computer apart, add power and memory or do something else to it, and put it all back together. The other day I found her in her room taking apart something complicated. She had her computer, tablet and smart phone all showing different instructional videos and she was laboriously (and successfully and safely) repairing some complicated electronic thing. It surprises us every time. Be prepared to be proud of your son! Expect it and show him that you will support him through the tough times and the victorious times.

There's a girl who was recently on the X factor tv show, and she's 13. She has a very serious and obvious joint deformity in both hands and arms and partial blindness (nothing to do with Pectus - another condition altogether) and her smile and talents are amazing. I don't remember her whole name but she has an unusual first name - Rion. So if you google Rion X factor you will see her story. Her mother went to karaoke and other singing competitions with her to hold the microphone because the girl is unable to. And her family has shown her how to feel valued, and courageous, I think her story (she's been interviewed several times) is a wonderful example of parent and child pulling together, with a good balance between the realities of the medical problems and a life being lived triumphantly.

Feel free to send me a message if you have questions about Pectus. I'm proud of you for being willing to be sad but also willing to seek encouragement.

I can't speak to this particular birth defect, but my husband has lived for nearly 68 years with an extremely contorted spine, a combination of every "-osis" that exists. Yet he looks normal when dressed, is strong and healthy in every other regard (except for arthritic toes), and has never allowed his "deformity" to affect his life, other than regularly stretching and exercising his back.

The kids I know who do the best with their frailties or physical differences tend to be the ones whose parents are cheerfully honest about recognizing the difference, and treating the child ONLY as differently as the challenge requires for physical or emotional support. The more "different" a child appears, the more most of them long to be treated as "normal."

I hope all goes well for your son.

Try mdjunction for an online support group.

my dd was 4 mo when she was diagnosed with a different issue, but I know how relieved we were to finally have a diagnosis and yet so worried about what it all meant.

In our case it was something not everyone realized immediately so in some ways no one treated her differently and in some ways it was hard to get them to realize that there was a problem.

It's amazing to me what advancements there have been in the medical field and how much is still being improved on, so while I don't know about pectus excavatum i'm sure the drs will kindly walk you through options when the time is right.

As others have said online support groups really helped me a lot. as did the drs at our local Shriners children's hospital and the state funded early interevention physical therapists that were just angels not only to my dd but to me as a worried mama. BUT ultimately my DD is who she is, not the medical issues she has.

so love up your little guy because they grow up soooo fast and try not to worry but to just enjoy him for who he is.

if you feel like you ever just want to talk and vent I"d be happy to PM with you, it's hard sometimes when other people don't understand that you have to grieve a little for the hallmark commercial life you have in your head.

hugs

I had a friend in college with the condition. He was just "eh, this is what it is, doesn't really bother me" and we all moved on. His was pretty severe but he managed to avoid most of the major issues. I had no idea til summer rolled around and he was dating a friend of mine. My guess is most of your son's friends will not peg him for being different immediately either.

There are a lot of conditions in this world. Most people are kind and simply curious.

So you be informed, inform your child as much as he needs to know, inform others around him as much as they need to know when they need to know (my college friend only mentioned it when someone else did) and try to just be informed vs fearful. He is and always will be your beautiful son. Remember to put that first.

My son has a mild case of it and so does his pediatricians son. about 1 in 300 people have it in one form or another. My sons is pretty mild but when he doesn’t have a shirt on and sits I can see the dent and I think it’s really noticeable but no one else has said anything about it. Until this past summer when my sister in law was watching him and was putting sunscreen on his chest and felt the dent and was like whoa that’s a little weird. She asked me so I told her what it was. Now that you are more informed about it and will be looking at all the little boys chest the pools (which you will) you will notice that there are a few others that also have a mild form of it. My son is now 8 and he has ran around without his shirt when he has buddies over and they haven't said anything. He takes his shirt off during basketball practice and no one has said anything. I don’t know if they don’t notice because really who focuses on little boys chests, or if they did notice and didn’t say anything about it. There is so many worst things to have than a little divot in the chest. Plus there are many other stars who have it, body builders if they can build the mass find it to be helpful in making their chest muscles really pop. There's even a really big MMA fighter who has it and you wouldn't have even thought twice about it until you know about the condition and then its like oh he has it too. Paula Abdul has it. I will be honest I was freaked and sad when I first started noticing it and then I finally asked his ped (I posted on this last year) and she just took a peek and said yup it’s pretty mild and my son has it too. Now I'm just trying to be positive and let him know it’s really not a big deal. The only time he has been embarrassed about it was when his little friend (girl) was going to go swimming with us. He said he wanted to wear a swim shirt. I said that is fine you can wear one if you want. She ended up cancelling so we didn’t get to go and I hope now that he wouldn't think twice about it. My son is very active in sports and I know that the locker room stuff will come up as he gets older so all I can do is teach him to be confident with himself and his body and come up with a brief explanation he can tell his buddies and leave it at that. Or some remark if someone starts to tease him that would stop them in their tracks. Sorry this is long. During all my research I did when I first noticed it I also learned about the opposite condition where the chest sticks out. Since I do notice chests now I saw that a lifeguard at a local pool had a chest that really stuck out. More noticeable than my sons dent. The thing is NO one else in my group noticed. Not even my son. So while you think everyone is going to be like OMG what is wrong with that boys chest. They wont.

J.:

Welcome to mamapedia!!

I'm sorry - I've not had to deal with this and not sure how to help you. I'm sorry you're little guy and you are going through this!!

I am wondering if there are support groups out there for you - who have been there and can help you through treatment or just dealing with it.

personally? I would want to have a brace put in or figure something out to make his chest right.

Good luck!