My son will be having his Thymus glad removed during heart surgery...vax issues? (x-posted in...

[shanniesue2]

He is 17 mo old. He has a sinous venosus atrial septal defect. It's a very large hole and 50% of the septum is missing. Anyway, I have one question that I'm not finding very reputable answers to:
They will be removing his thymus gland during the surgery. What implications does this have for vaccinations? Does it make them more necessary? Or more risky? I can see how the argument might go either way... so I'm wondering for other parents of children who've had heart surgery, did you consider this? What did you do?

BTW, if it matters... he has had 3 rounds of DTaP, Pc, and Hib... 1 round of MMR. Before we knew about the heart defect, we had decided to pause other vax's until we could do more research.

[Gitti]

What does your doctor suggest? And (I am assuming he suggests all vaccines) can he provide studies of children in your son's situation?

If not, your son would be a test subject.

I am against vaccines since they only interfere with a normal healthy body, and I am even more against vaccines (if that were possible) in a child that has healthy issues already. Vaccines can only add to the stress.

[miriam]

http://www.becomehealthynow.com/article/bodyimmune/961/

In the 1940s and 1950s, doctors used to put radium boxes on children's chests to shrink the thymus gland. This seemed to help a chest cold but years later when that child had grown to adulthood, that child developed cancer of the thyroid. Most of my more affluent friends who could afford more medical attention as children got this treatment only to have their thyroid removed as adolescents and take thyroid meds for the rest of their life.

No one knows the full function of the thymus gland. Doctors and scientists are still learning. Ask your doctor to spare his thymus gland as it has functions in the immune system that scientists still do not understand. If your son already has heart problems why add immune system problems to his health history.

see also the Shore RE, Woodward E, Hildreth N, er al., Thyroid tumors following thymus irradiation J Natl Cancer Inst 74:1177-1184, 1985

[2boyzmama]

I responded in the SN forum, but I wanted to post this link for you. Again, my perspective is coming as a parent with a child who has NEVER had a normal thymus, which, as it was pointed out in your other thread, is different than a child who had a normal thymus for 17 months. Your son's immune system has had time to mature normally, whereas my son's has not.

Anyway, this link explains immune deficiencies pretty well, it's targeted to families of children with my son's syndrome, but parts of it might be relevant to your son. If nothing else, it will give you more questions to ask at least!

http://www.maxappeal.org.uk/infosheet.asp?id=8

It would seem to me that live virus vaccines should be contraindicated for him for sure, and that if you choose to continue vaxing him with the inactive vaccines, it would be prudent to check titers to see if his immune system is working as it should.

And I still think that it's worth asking why they can't reimplant your son's thymus either in a different location, or even back in its original location following the heart surgery. It seems logical to me, although I'm pretty ignorant about heart issues as my son has none, so I may be way off base here. Try to google "thymus transplant" and see what you find...

[twinsplusone]

well, I agree with Gitti

I do not have any experience with thymus, but my son had open heart surgery when he was 4 days old. He did get 2 doses of DTaP& HiB (at 2 & 4 mos).......& not a single thing since. & aside from having a rough time with colds for a few years, (he 'barked' for a LONG time) he has greatly improved in his lung capacity, & is a very healthy kid
He also got a nice case of chicken pox a year ago March

good luck with his surgery!

[AuntG]

Make sure you he's up on his Hep vax though since 1) he'l be in a hospital and 2) he will be having an open surgery that may require a transfusion.

And find some support for that surgery! Best wishes to you and your family. A lot of us have been there!

[2boyzmama]

Originally Posted by AuntG

Make sure you he's up on his Hep vax though since 1) he'l be in a hospital and 2) he will be having an open surgery that may require a transfusion.

And find some support for that surgery! Best wishes to you and your family. A lot of us have been there!

This is one that we more heavily considered with my son as well, because of the potential that he might need a transfusion during his various surgeries. So I looked up rates of Hep transmission in a general hospital setting, plus rates of transmission from tainted blood. I was still comfortable not getting him the vaccine, but it was something we looked very carefully at. The stats of hospital and transfusion transmission vary from area to area, so ask about them in your area so you can make an informed decision.

If you have time, you might ask the dr/hospital about banking some blood from family members before his surgery, my husband has the same blood type as my son, so we know that if he ever needs a surgery that may require a transfusion, we are going to have my husband pre-donate.

[miriam]

If you have time, you might ask the dr/hospital about banking some blood from family members before his surgery, my husband has the same blood type as my son, so we know that if he ever needs a surgery that may require a transfusion, we are going to have my husband pre-donate.

I believe that you can do directed blood transfusions, that is blood from you and your family which should avoid most problems with blood donations from the bank. This should not cost much as it is your blood and you are simply paying for storage.

[nancywt]

I realize that your child's surgery was now long ago but I write this for all those who are seeking information now. 

I found this forum when, for the umpteenth time, I continue to search for information for people without a thymus. What triggered it this time was my concerns over my daughter recently receiving a tetanus shot (after cutting herself) and whether this could cause more harm than good given she had her thymus removed during open heart surgery some years ago. 

I would recommend that you ask the doctor to leave in at least some of the thymus if not all, and if not, to transplant it...which is something that is possible. 

My daughter was born 28 years ago with a heart defect which they did not correct with surgery until she was 14 years old. 

At the time of the surgery they did not forewarn me of the need to remove the thymus nor did they tell me after the surgery that they had done this. 

I discovered it when she was getting ready to go off to college and I ordered and read her medical records (so that I would have them readily available should she have trouble while away from home.)

The description of the surgery made no mention of the thymectomy but I came across a lab report on her thymus entitled, "Incidental thymectomy". 

At age 14, her thymus was still full-blown and had not begun to shrink at all, according to the report. Knowing the importance of the thymus, despite that she had lived 14 years with it (most of us get to keep ours our entire lives.) I was very upset to learn it was gone forever. 

What upset me the most is that I was uninformed as to her real situation and when she began to get ill with one thing after another, I was unable to deal with it appropriately. 

For the first 9 months or so after she recovered from the surgery itself, my daughter was the picture of health--the best health she had ever experienced by far. Then things started going bad. To make a long story short, she spent most of her teen years coming home from school and crawling into bed. Or not going to school at all. While other kids her age could abuse their bodies in just about every way and still get up bright and bushytailed, she would be almost gray looking and not well at all. She acquired epstein barr, urinary tract infections, yeast infections, hives and no end of mystery illnesses. There was a time when she went week after week for every blood test under the sun to figure out what her problem was. As she got older she began to learn that she had to get more sleep and eat better than her friends and now she is sort of on an even keel, although recently her gynecologist said she is showing very early signs of uterine cancer. There is zero history of this in either my family or her father's family. We are hoping of course that nothing will come of it. 

Before I knew of her situation, I was barking up every tree to find ways to restore her health.  Many of the methods out there involve stimulating the thymus. Very few healing methods are for those without a thymus.  One thing I did learn was that colostrum might be helpful (this is the fluid that comes out of a mother's breast before milk comes in. Apparently it is to help pass on immunity to a child who has not yet developed his own.) It is very inexpensive and I encourage my daughter to take it whenever she thinks she is getting sick. The other helpful methods are to kill any invaders coming into the system. I use colloidal silver (I like ASAP brand the best) for that. Also helpful is to keep the body alkaline, as an acidic body is a perfect host for all invaders. When the body is alkaline, germs and viruses cannot survive. There are more and more books on the acid/alkaline balance if you want to research this. Of course getting nutrients into the body helps it to stay healthy and rebuild after an illness so I am a great believer in those as well.  Organic colloidal minerals (I like Active Liquid Minerals) in addition to vitamins are very helpful too. 

Anyway, again, I would insist with the doctor that the thymus be left in or transplanted...and if the doctor doesn't bring up the subject, don't assume it is because it is not going to happen...address it before the surgery. If they had spoken to me about it, maybe I could have done something about it, and certainly I would not have lost over 3 years in getting her health back.  

P.S. The surgery itself, closing up the hole in her heart, was very positive and took very well.  My daughter, although sick a lot, could feel a real difference (especially in those first 9 months) and claims she would have had quite a different childhood if they had done the surgery when she was a baby. (They waited thinking the hole was closing up and then discovered that the hole was just sucking a valve into it and gave it the appearance of closing up...so had to repair the hole and the misshapen valve....) Good luck to all undergoing this with their children. Thank heavens they can do as much as they do to repair hearts!

[swede]

Originally Posted by 2boyzmama 

Originally Posted by AuntG

Make sure you he's up on his Hep vax though since 1) he'l be in a hospital and 2) he will be having an open surgery that may require a transfusion.

And find some support for that surgery! Best wishes to you and your family. A lot of us have been there!

This is one that we more heavily considered with my son as well, because of the potential that he might need a transfusion during his various surgeries. So I looked up rates of Hep transmission in a general hospital setting, plus rates of transmission from tainted blood. I was still comfortable not getting him the vaccine, but it was something we looked very carefully at. The stats of hospital and transfusion transmission vary from area to area, so ask about them in your area so you can make an informed decision.

If you have time, you might ask the dr/hospital about banking some blood from family members before his surgery, my husband has the same blood type as my son, so we know that if he ever needs a surgery that may require a transfusion, we are going to have my husband pre-donate.

Just an FYI, the hospital told us that they don't usually want parents to donate to their kids - soemthing about antibodies.  Not sure exactly what that means, but we did a directed donation for my daughter for her surgery and that's what they told us.