We all learn from each other now, and without social media we’d all still be alone, looking for someone else out there to relate to, not understanding our (or our child's) bodies and minds the way we did 10-15 years ago (depending on when you got on social media). The power of conversation is like a fire starting as a little tiny flame…then we all contribute our piece, our story, to build one giant fire that keeps us all a little warmer than we were before. We are truly one giant team doing this life together! This is why I do what I do: Interview survivors and families, share information that could help us, and ask endless questions to get us talking!
Thank you to ALL who contribute to these life changing conversations!
*The original public post I wrote on Facebook on November 9, 2015 is below. There were a total of 121 comments from the CHD Community. Comments such as “following” or smiley faces, gifs, memes, side conversations, or tagging names have been removed. To protect contributor’s privacy, I have removed their last names to make into a blog. Exception: I keep some full names (besides my own) if it is scientific information they have personally done research on. I like to make sure credit is given for their hard work, as I completely understand the feeling of not being cited for my research and work. I also changed children’s names into “my son” or “my daughter” to protect the parent and child’s privacy.
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ATTN CHD Parents & Adults:
As the first living generation of HLHS, we as adults like to stay in the loop with what is going on with your children and vise versa to build the most knowledgeable, on point, strong community we have for our future generations as well as to find the unsolved mysteries within ourselves.
With that said, we have recently found a post from a mother wondering if all HLHS (or any CHD) children have their Thymus Gland removed and so I would like to ask all of you, have your HLHS (or any CHD) children had their Thymus Gland removed?
As adults born in the 70’s, 80’s and before this type of information was often not shared with our parents, or even written down in our records. They were just doing what they needed to do to keep us alive. It is extremely helpful to understand our health and what all our bodies went through and learning from CHD babies and children just as much as you all learn from us is truly life changing. It takes a village to build solid Research! Your input is greatly appreciated!! -Stephanie Romer, HLHS 1985
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· Tammy Not us!
· Carina My daughter had part of hers removed.. Her surgeon said that it's easier to get to the heart with it removed. He also stated though, that the bit she has shouldn't be any different if she had the whole thing.
· Jennifer Anyone who has open heart surgery in the first year of life has had most or all of their thymus gland removed, but your surgeon will usually not mention this. A baby's thymus covers the heart, so in order to gain access to the heart surgically, the thymus has to be removed. As a child grows, their heart grows much faster than the thymus, and the thymus gradually atrophies, so this is not an issue with older children or adults. The traditional thinking has been that this does not have much effect on the immune system, but there is at least one paper showing that people who undergo thymectomy as babies have decreased immune function.
o Krista Do you know where I could find that article?
· Tammy Ok wow question for the dr at our visit next week.
· Michelle My daughter’s was removed, it was easier access to her heart.
· Theresa no my son has not had any glans removed he is 7 years old
· Jade-Marie Archer My daughter has had her Norwood, Glenn, Left cavopulmonary anastomosis, And her fontan..I've never even heard of this before!
· Stephanie Romer This is awesome. Thank you so much for everyone's input and keep it coming! This is why I felt this needed to be put on the table and dissected by all of us together. This is how we get answers!! 😃 Hopefully all of us can figure it out together. None of us older HLHSers that I have spoken to have had this removed so we are at least multiple living statistics that are still doing great despite the removal of the Thymus Gland. 👍
· Heidi I believe with any OHS they remove it, my son doesn't have HLHS but other diagnoses and his was removed as an infant and it totally freaked me out!!!
· Michelle From what we were told, only a small piece of John's thymus gland was removed but he was already 2 by the time he had his first surgery. From what his pediatric cardiologist and surgeon told us, they need to remove it to get at the heart in all heart surgeries. Hope this helps.
· Stacey Lihn Some surgeons resect partially, some fully remove the thymus. I second Jennifer’s comments and have discussed this issue with several surgeons who perform Norwoods, etc. it's near impossible to leave the thymus intact. Most surgical dictated reports mention thymectomy or partial resection.
· Lisa I just googled a picture and can see how it would obscure the view...
· Linda My grandson did. Standard practice in heart surgery in newborn.
· Laci My son is 11 and had 4 OHS and transplant and I have no idea
· Emily I actually have no idea! I have asked my mother (she knows everything about my surgeries) if she by chance doesn't know then I will ask my cardiologist tomorrow!
· Jessie Was just talking about this on another hlhs page. My child’s was removed and donated to medical science to help grow cells for people who are born without an immune system.
o Stephanie Romer Wow that's amazing! ❤️
· Emily My mother responded, I did not have mine removed!
o Stephanie Romer Awesome to know! 😀
· Paula Yes, My daughter did and now she has a new heart and no thymus...hoping it doesn't affect her new heart.
· Heidi Never heard of this so I'm going with no....unless they didn't tell us but they are good about relaying info.
· Serina My daughter's was. It's pretty standard when having open heart surgery because of where the Thymus gland sits. Usually they don't tell you its removed. I read it in medical records.
· Jill Just checked my daughters files, it was not removed.
· Carmelo I never had mine removed
· Tina As soon as I get a chance I'll look through my sons medical records! I remember it saying something about it but not sure it said removed!
· Gabrielle Yea I haven't had anything removed.
· Jill I did just email the cardio as now im curious..lol maybe its not written and just understood to be removed but they write down EVERYTHING so i cant imagine they would and not log it.
· Tamrah No my son didn't have his removed (I never heard of it being removed)
· Suzanne No. HLHS age 10 years.
· Jill Check this out! I also googled the thymus in infants and goly cow i cant imagine they would leave it in. Its huge. The Thymus: to Remove or Not to Remove? That is the Question.
o Stephanie Romer I did the same and I agree it seems like it needs to be a very important part of the health for any child, especially sick children with already compromised immune systems. Thank you so much for sharing this!!!
· Shelley I'm not sure about my son. He has an echo in two weeks so I'll ask then. I would just like to say reading about young adults with hlhs gives me so much hope for my 5 yr old son as i do worry about his future. You are all such an inspiration 😊
· Jimie June Guzman My HLHS son has not had to have it out. He is 7.
· Alyse Young 24 HLHS and I still have my thymus
· Stephanie I was told standard practice with newborn ohs. I asked about it, and believe this is the only reason it was mentioned. I don't think most surgeons discuss it because of it being a standard of practice.
· Melissa my child’s was removed. I had no idea what a thymus gland was until I heard other heart moms speak about it. I was angry nobody ever told me it was removed. I was told in order to get to the heart it must be removed so I'm guessing any baby who's had OHS does not have their thymus gland, although they may not know it.
· Tammy I emailed my son's surgeon and he stated the following (keep in mind that my son has had seven heart surgeries): I have always tried to preserve the thymus in all neonatal surgery. Though it has been difficult to definitively know whether it matters or not, I have nonetheless kept it intact whenever possible, and am pretty sure that is true for my son.
o John So much of my son’s surgeries performed and I didn't even know we had a thymus. I guess from what was said, by the time I had open heart, mine was gone.
o Tammy Exactly. But from what I've been reading it helps build a child's immunity and these heart kiddos need all the immunity help they can get
· Lisa My daughter had hers removed .... I asked why and it's because they have to cut it open when having open heart surgery.... As an adult the thymus disappears as we have enough immunity to fight infections therefor we don't have one x
· Krissie Our kid (hlhs) had her first surgery at 10 days old. And yes. They said it was standard practice with the littles. Guessing it depends on the hospitals practice as to whether this happens or not.
· Jen I can honestly say that I don't recall my son's doctors talking about that, but that doesn't really mean it's one way or the other! Good luck!
· Tracy I never heard of this. My daughter is 2 & 1/2 & has had 2 of the 3 staged surgeries. But now I want to know.
· Tosha No my son did not have is removed. J is 13 years old
· Leticia Never heard of this. My son is four and has had two OHS I will now be asking. Is this something of concern?
o Faith Affects immune system so they get sick easier
· Faith Yes. Explanation from dr was it was in the way when my daughter was opened up
· Stephanie My son was born without a Thymus. They went to remove his (to get at the heart) and there wasn't one.
· Tabitha I was never told that my son's was removed, I only found out that it was in fact removed after reading his hospital records.
· Tracy My daughter has immune deficiency. The immunologist believes her thymus gland was removed during surgery. She is prone to infections. Started ivig therapy Before this post I did not realize others were dealing with this issue
· Katie Yes, my son had a portion of his thymus removed. According to his doctors it is removed if it is in the way of where they need to operate. In most cases, it is in the way and thus, removed. Sometimes it is not and they can leave it.
· Susan My TOF daughter had hers removed at 1st surgery. Surgeon said it was more the norm that not. Kind of like it is in the way during surgery. He said the thymus helps kids with immunity up to around 18 months of age. Think I remembered that as he told me.
· Raena My son 10 HLHS, Dextrocardia, Situs inverses, has not had his removed that I know of. I’ve never heard of this but will check into it!
· Gigi My son 23 has not had it removed.
· Serina My daughter had HLHS and hers was removed at her first surgery. Nobody told me this. I asked after I heard about it and was told they typically do since it sits in the way during heart surgery.
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Please share and talk to keep this important conversation going!! If you’d like to contribute to the conversation by sharing your child’s information on Thymus or No Thymus or any information that could help the CHD Community, please email: Stephanie@CHDLegacy.com to add your experience to the CHD Legacy Blog!
To learn more about the Thymus, please check out these helpful links suggested by parents and myself:
HLHS, Fontan, 1985
Creator of CHD Legacy