On the cutting edge

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

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5 Responses to “On the cutting edge”

  1. Megan Says:

    I understand your point, but I feel like TGA is different from many defects. Unlike many repairs the Arterial Switch makes the heart function normally. My son had his repair at 3 days old, and apart from seeing a cardiologist once every 6 months to check out scar tissue development (which has been minimal) he functions normally. He doesn’t slow down or stop nor is he limited in his physical abilities. He runs circles around most 2 year olds that were born with perfect hearts. I do see what you are saying…his heart is still not normal, but he doesn’t have to make special allowances because he was born with a heart defect. Granted we do not know what the future holds and if his heart will last as long as his playmates that are not effected by CHDs I don’t see him as having any difference of a life as any other kid. I acknowledge that his he “repaired” vs. “fixed” which might be a slight difference, but in his case I wouldn’t see him needing special care.

  2. Erin Says:

    Okay I hate to admit this but I’m a TGA survivor and I AGREE with Steve 100% … we aren’t fixed … we aren’t good as new and won’t be … even a heart transplant has after affects and yes I had the “switch” and yes my lips are pink 100% of the time, but when I get cold or tired my hands and feet turn a slight shade of purple … and yes I have 2 other very serious heart defects (Single Ventricle, and Pulmonary Stenosis) but my TGA was the main focus besides the SV and I’m sorry to say your children will not be normal … they might be okay for a period of time and I can only pray that they can make it to 28 like I have now and am still expected to survive another 50 years … but honestly there will come a time in their life that they will have to slow down … your doctor isn’t only checking for scar tissue and that worries me that you think that is only what they are looking for … this a procedure that means a HUMAN went in and switched things … besides scar tissue the heart can be torn during growth, it can suddenly backtrack and not want to go through the tubing used … it can suddenly start failing … I got the flu and my heart changed forever … these kids have a HELL of a better chance than Steve or I ever did … granted … but they are going to need some type of special care … most won’t play sports, some will and be injured pretty bad (I’ve seen it firsthand) and some will thrive and need nothing … my own mother was under the impression I was done with surgeries until the doctor told her … Hey we take it a year at a time now, and if she feels bad she needs to go to the ER immediately, because with this type of defect and her others every second counts, a child could blow an artery and not know because they aren’t treated differently or taught to watch their chest with everything they have … I had a friend wrestle and break his sternum … doctors told him it was fine to be a wrestler … his body told him otherwise … I think honestly these parents strive for normalcy which is wonderful … I can’t believe half the stories I hear of kids who have the same issues I have and don’t take medication … when I talked to my doctor he said “What can I say, new aged!” Steve not all old school doctors are bad … please know I trust my life with a 60 year old doctor way more than 30 year old … because the up and coming doctors are knife happy as I call them, I haven’t met one who doesn’t want to cath me just to see what is going on … my heart doctor hasn’t let me have a cath since I was 5 … he knows I have family history of relatives dying during this procedure and he’s not really going to risk my life to teach medical students … now if I need a cath because nothing else will help I’ve been warned but when I was going to a newer age doctor that was the first recommendation he had, and I called my cardio and said what is going on, he said Erin, if it’s not broke why are we going to look to see it … please don’t let him do that come back to my office and I’ll see you until I retire … please know that most cardiologist don’t look at this as “fixed” and I highly doubt those exact words were used … remember sometimes people hear what they want … my doctor doesn’t even use the word repaired … he says “We went in and got it to work properly for the time being, but who knows what tomorrow can bring?” That way I’m always prepared for the point where my Fontan might need revising, or my switch stops working properly, this is a never ending battle I’ll agree with you on that … but sometimes I feel like the older cardio’s got it right … I grew up in the Washington DC area I know John Hopkins were the first to do a child’s open heart surgery and maybe the best for you at the time, but my cardio wouldn’t send me there … his choice was the Mayo Clinic … it’s all about what your cardio prefers, what language they use, and honestly how connected they are to your child … as crazy as that sounds doctors have human emotions too and I find is your cardio is like a member of the family, you tend to do a lot better …

    • Steve Says:

      There is nothing wrong with an older doctor, far from it. Usually they have been around the block and seen a lot during their career (there is the occasional doc who is “set in his ways”).

      When I say “Old School” and “New School” I am almost always talking about the CHD prognosis from the past (“You’re fixed!”) vs. what they have come to realize; we’re repaired but not fixed and we’ll need to be followed all of our lives. Sorry if there was any confusion over that point.

  3. Amanda Says:

    There are cases of straight up TGA needing either aortic or pulmonary valve replacements. The fact that the two most critical vessels ascending from the heart grew in the wrong place means there are often structural malformations from the point of ascension.

    Like Erin, my son is a single vent who also had TGA but the hypoplastic aorta was far worse than even the TGA. Another reason “just” TGA kids should be watched is that you have a history of malformed vessel growth. Liam’s pulmonary arteries did not grow properly after birth, so it was a condition that expounded itself over time.

    I’m not saying Megan’s son will need a valve replacement or will have complications other than scar tissue. However, the fact that a heart and its structures did not form properly in the first place makes one need to be vigilant through childhood and into adulthood to be aware of the health and growth of the whole system. That doesn’t mean limitations for those who don’t need to be limited, it just means diligence in long term care – i.e. don’t let the teens slack off about making their follow up routine and a normal part of life.

  4. Erin Says:

    Steve … okay thanks for making it known what you were speaking of “old” vs “new” school and I agree for a long time they thought we were fixed … lucky being born in the 1980’s did afford me the luxary of them knowing we aren’t fixed but repaired 🙂 I’m glad to be repaired and I can only hope to one day be fixed!

    I agree … and I would like heart parents to know that the teen years and early adult years are the most critical (okay not most while they are babies and going though these repairng surgeries is much more critical) when it comes to care … what I mean is the teaching process of transistioning into a young adult CHDer … learning to take their medications (if they are needed) and especially the reason for them should be top priority … I have a friend who needed a transplant because she missed her heart meds for years … I am guilty of missing mine … we also have to find a way for parents and adults with CHD especially those on fixed incomes or lower incomes to always be able to get their medication if you have to choose between your heart meds and food you are going to want to eat … I just hope that one day this is all sorted out and it’s easier for us to go along through life … I know personally even at 28 my parents have to help me pay for my heart medications even being on disability (please know that for 2 years when you file for disability you aren’t entitled to Medicare and sometimes the amount you get won’t allow you to qualify for Medicaid) … I am in that situation right now and it’s heartbreaking (no pun intended) and I just wish people would and could understand it’s hard for us to not only get the cardiology care we need but the medications we are needing as well … I’m lucky my cardiologist let’s me come for free (well it’s a write off but you get the point) because he knows the fear of not being able to pay (and now not paying can ruin your credit) will keep me from coming … I hope that the children in the future have a better Heath Care System than I have currently and we can find a way for these CHDers and their families to always have the medical attention they need!!!

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