Name: Momof3boyz

Salem, IN

Number of kids: 3

Ages of kids: 10 mos., 3 yrs., & 5 yrs.

Problem: We would like to hear from anyone who has any experience with a condition known as pectus excavatum. Our second son was born with this condition which seems to be hereditary and it does run in the males on my husband's side of the family. Both my husband and his father and a nephew have this problem, but our son seems to have a more severe case. We have met with a pediatric surgeon who strongly suggested that this be corrected because it may soon affect his lung capacity and the position of his heart as he grows. He is now 3 yrs. old and the surgeon says he needs to be at least 4 yrs. old before the surgery. The procedure has been explained to us and many questions answered, however I would like to hear from someone who has had this corrective surgery or has a child who has and maybe some advice as to the situation.

Solution submitted by CG from Atlanta, GA: I have seen several surgeons in the Eastern US this past year regarding PE repair. Our 22 year old had PE repair by a pediatric surgeon 15 years ago and the results were not good, and problems resulted. If you choose to repair PE, seek a surgeon who does PE repair weekly at least. There are three techniques which appear to be good, the rest are similar to my 22 year old's. Johns Hopkins continues to be a leader in this area as well as the possibly related Marfan Syndrome.

Dr. Walter Pegoli, ROchester, NY trained at Johns Hopkins and is quite knowledgeable. Dr. Nuss in Norfolk developed a technique which has been accepted by numerous surgeons in the US, yet it scares me. Dr. Haje has a web sight and a very impressive non surgical correction. Dr. Fonkelsrud also has a web sight and uses a similar technique, though he does not use age limits to prevent regrowth as Johns Hopkins and Dr. Pegoli appear to.

As for correction, seek the advice of a surgeon who specializes in PE repair. I am uncertain of whether to correct PE surgically on our 11 year old with severe PE. It is a difficult decision to make.

Another solution submitted by Lindsay from Long Beach, CA: I am a 30 year old father of two boys. All three of us have a pectus excavatum as have all the males on my father's side of the family. I have never had any corrective surgery nor do I plan on having my boys under go any type of corrective surgery. This condition has never hampered any of us in any manner. I have always been athletic and would consider myself to be in very good physical condition. Throughout high school and college I was extremely active in football, baseball, lacrosse, basketball and I am now an avid long distance bicyclist, runner and rock climber.

I have never heard of this condition affecting any one in my family. Also, I have only known one other individual outside of my family who had this condition and he too was unaffected by the condition.

Until reading the posted solutions to this condition, I never knew there was any type of corrective surgery. However, having gone through life with this condition, I am unable to comprehend any need for corrective surgery. I would seriously consider the need for corrective surgery. Unless the surgery is for medical reasons caused by the condition, I would not, based on my life's experience, under go this procedure.

Immediately after posting the above, I came across a bulletin board site in which pectus excavatum was a very active topic. The site is www.surgeon.org.

Of particular interest was a constant referral to Dr. Arnold Leonard of Minneapolis. Apparently this doctor has developed a corrective technique involving a one night stay in the hospital and six weeks of bracing. Many of his patients had posted messages, all raving positively of the doctor and his technique.

His e-mail address is: leona002@maroon.tc.umn.edu

Many of the patients were older, 30-45 years, so it would seem that this doctor is not of the same philosophy that corrective action has to be taken at a very young age.

Another solution submitted by Jackie K. from Fort Walton Beach, FL: My daughter just had her Pectus Excavatum corrected because if she had not it would have caused her further problems with being out of breath and later heart problems as there was too little room for her heart and it was being pushed over to the left. I have a full account of her operation on my homepage at: http://www.geocities.com/Paris/LeftBank/4408

Her chest is now perfect. She does have a will hardly show when she is older. I can only see one stitch as the doctor did such wonderful work sewing her up. I am glad she had it done. It's only one week after surgery and everything looks perfect.

Try contacting the NEMOURS CHILDREN'S CLINIC in Pensicola, Fl

Another solution submitted by "Diver" from Guilford, CT: I hope that this will help a little. My brother had this condition and our doctor did nothing to correct it. He was 15 before we actually got him operated on. We found out about the operation by chance, a friend of the family saw something about it on television and thought of Craig, my brother. We were floored, for years our doctor was telling us that there was nothing we could do, and that it was mostly a self-conscious problem!! Can you believe that? I could put my whole fist inside my brother's chest and from the side, you couldn't see my hand at all!! Anyway, once we heard about it, my parents acted quickly and we went to John's Hopkins Hospital in Baltimore, MD. The leading surgeon in this operation at the time (more than 15 years ago) was a man named Haller, I forget what his first name was. He was a wonderful man, very kind and gentle, and an excellent doctor! Craig was almost too old to have the operation at all, they prefer to have the patients be around 4 or 5. Dr. Haller told us if Craig did not have this operation, he would have heart problems by the time he was twenty! Ok, onto what you really want to know. The operation is very scary, but necessary. It was very hard to see my brother after surgery, he was in quite a bit of pain and his chest seemed to flutter with every heartbeat. When they cut the sternum, the rib cage should pop out to a normal position. With Craig, it popped out to the side, and they had to take a rib from one side and put it on the other side to balance things out, or something like that. We were told that it is very rare to have this happen, and they had only seen it once before. The first week of recovery sucked, to put it lightly, but after that it was smooth sailing. Craig is now a healthy happy 32 year old father of one daughter. He has a scar from one nipple to the other and a couple of scars just above his bellybutton where the drainage tubes were. Your son probably won't scar as much since he is much younger. This is great that you have the facts early and plan to act on them. Good luck, it will be hard on you, but remember that you are doing the best for your son. Please feel free to email me directly if you have more questions that I didn't answer.

Back to the Parentsroom Problem Page (no frames)