A baby with heart disease and Canadian health care

The following forum exchange took place over a 1 month period during the Fall of 2000.  Mrs. B, from Nova Scotia, is the mother of a 6 month old infant with “failure to thrive,” the medical term given to infants who are not gaining weight and growing normally. 

This exchange is interesting from two standpoints: First, it nicely illustrates how the Heart Disease Forum can occasionally help steer people in the right direction with undiagnosed (or under-diagnosed) heart problems.  And second, it provides a sobering lesson on one of the drawbacks of the Canadian Health Care System – a system that is, nonetheless,  unquestionably more equitable than that in the United States.

Medical terms used in this exchange:

patent foramen ovale (pronounced o-valley).  In utero, there is an opening (the foramen ovale) in the atrial septum – the wall dividing the right and left atrium – that normally closes within a few hours of birth.  In some infants, the foramen ovale does not close completely.  This condition, usually a benign one that requires no therapy, is called a patent foramen ovale.

atrial septal defect. This is an actual hole in the atrial septum caused by imperfect formation of the septum during development. It is much more serious than a patent foramen ovale.  Atrial septal defects usually do not cause problems during infancy, but they can.

Click here for a quick review of the chambers of the heart.

From: BearHost
To: All

Hi everyone
I am hoping you can advise me here. My son was born 6 months ago and has a congenital heart defect called Patent Foramen Ovale. Basically it is when he has an unclosed hole where the heart used to be connected to the umbilical cord. Anyways, I was told by one doctor that it is what is causing my son's failure to thrive but another doctor says no that it wouldnt cause that. So I am a bit confused because I feed my baby ALOT and more than the average baby and he is way smaller than the average baby and is not making the standarized growth charts and I am concerned. The doctor that feels that this condition is of no consequence thinks I am not feeding my baby enough but I feed him soo much that he pushes the food away and I feed him so often (to please this doctor) that he isnt interested in food then at that time). So I have to know from you all if this closes up and when it will close up (to know if it does) if my sons failure to thrive will go away and he can become big and strong like other babies his age. My son is 6 months old and weighs 14 lbs. He was born at 8 lbs 6 ozs. Please advise me and reassure me. My son had all the battery of tests on his digestive system and is perfectly healthy except for this Patent Foramen Ovale and this Failure to Thrive type condition. I just have to know this: Is the Patent Foramen Ovale a possible cause of his failure to thrive? If so, what can be done to change this? Is there an operation? Should he have one? Why and Why not?
Thanks
Mrs B

 From: HeartDisease.Guide
To: BearHost

Mrs. B,

Patent foramen ovale (PFA) is usually a benign condition that causes little or no problem. However, on occasion it is associated with (or confused with) an atrial septal defect (ASD) - a congential heart problem that can cause feeding problems and failure to thrive.

You need to take your child to a pediatric cardiologist who can fully characterize 1) the nature of the problem (is it a PFA, or an ASD?), and b) the severity of the problem.

Most times PFAs and small ASDs close on their own, so pediatricians like to wait. But if the lesion IS responsible for failure to thrive, waiting is generally not the best approach - instead, treatment usually needs to be administered.

The bottom line is this: make sure your baby is examined by a specialist who deals with this problem routinely.

From: BearHost
To: HeartDisease.Guide

Dear DrRich,

Thank you for replying to my message. I am going to my doctor and making an appt with another cardiologist to get a full explanation on my son's PFO and to check if it is possibly an ASD or not. I will let you know how we are doing as I find out more information. I appreciate your comments to this matter. It is very difficult for me to watch my son stay so small day after day. I am very concerned and am hoping that whatever the situation is, that it will be treatable.

With much Thanks
Mrs. B :)

From: BearHost
To:HeartDisease.Guide

Dear DrRich,

You would be pleased to hear that Stefan had his echocardiogram today and the problem of his failure to thrive has been discovered. You were right on the money when you suggested that I get a second opinion and when you suggested I have him get another echo done. He has what you thought might be causing his FTT condition. He has the Patent Foramen Ovale along with a large Atrial Septal Defect.

I just had to write you today to thank you for your advice to me two weeks ago. If it wasn't for you I wouldn’t have ever known his situation. Our pediatric cardiologist wants to see him at age 3 years. He is currently 6 months old now. He said he can't operate on him right now as he is young right now but if he still has ill effects from the ASD then an operation can be performed at age 3 or so. Sometimes no operations are done at all. Well the failure to thrive is still going on and so he still has it. But the Pediatric cardiologist said that it isn't as bad as some of them can be. So I am trying to be optimistic here in saying it will get better? Like maybe go away? What do you think?

Are ASDs operated on in the States? They are not operated on here in Canada unless they are life threatening. Well that is all for now. I want to once again thank you for your advise to me and I appreciate your wisdom on this matter.

With much thanks
Mrs. B

From:HeartDisease.Guide
To: BearHost

Mrs. B,

Thanks for the follow-up. You are right - the whole picture makes much more sense now.

I am a bit concerned about the "watch and wait" recommendation of your cardiologist. To the best of my knowledge, large ASDs do not close spontaneously very often. Since your son’s failure to thrive (FTT) is being attributed to this ASD, I am assuming it is large. And since it is (apparently) causing failure to thrive it is – by definition – already symptomatic, and since part of the “watching and waiting” is to observe for the onset of symptoms, then I am at a loss as to what is being watched and waited for.

While I do not want to cast aspersions on the Canadian medical system (which, despite its shortcomings, is far more equitable than the US system), it seems clear that heart operations in Canada are performed much more reluctantly than in the States. Some of this reluctance may be beneficial, of course. But if I were in your position, I might consider making a trip to, say, Boston, and having a (forgive me) THIRD opinion.

Best of luck,
DrRich

From:BearHost
To: HeartDisease.Guide

Dear DrRich,
I agree with you that Canada's healthcare system has its problems. I have heard many other stories that would floor you. It is strange though that the two countries differ so much on heart operations. You would think that FTT would be just as serious to our doctors as it would for USA doctors. It is terrible to me to hear over and over our health suffering because of money. I wish I could go to Boston now and get a third opinion. If I had the money I would for sure go tonight. But it is 10,000 a day for us to have him there in the hospital and I know it doesn't make sense that our world focuses on money more than health but it does and it makes us wonder why because you would think we would all wake up to real life and the heart and how it is more important to be healthy than to be making money.

I don't know if you heard but our province (Nova Scotia) is so low on funds for healthcare. We have the highest mortality rate for cancer and heart disease and diabetes and some other biggies out there. My best friend just passed away two months ago from ovarian cancer and she was only 29 years old. Once again it was a situation where the doctors didn't take her symptoms seriously because she was "young". I feel that the American system of healthcare is more for the people and a better one. I agree with you that Stefan needs a third opinion. I just don't know how I would pull it off, and it makes me wonder why I don't deserve to get the proper care here where I live as I would get in the USA. It doesnt make sense and isn't fair at all.

Thanks for your information on my son's condition. I am talking this over with my husband because after reading your letter I am very concerned as to why the doctors are waiting and seeing for symptoms to develop. They told me that we have to wait and see in case symptoms develop that are worse than his current FTT which obviously doesn’t bother them since they are not doing anything about it. Before I sign off here I have another question for you. Does my son need to take antibiotics before dentistry work in the future? I read on the boards that heart problems get caused by dentist work. Or something. Please tell me more about this? My doctor said it doesn’t concern ASD patients.

Thanks very much.
Mrs. B

From: HeartDisease.Guide
To: BearHost

Mrs. B,

Now that I understand your position a bit better, let me take another tact. A third opinion would still probably be best, but clearly that does not seem possible.

Can the cardiologist you went to report to you, from the echocardiogram, just how large the ASD is? ASDs greater than 8mm in size most often require surgical closure, whereas those less than 5mm often do close on their own (but are rarely, if ever, symptomatic). If your cardiologist can tell you the ASD is < 5 (and perhaps < 8), then it is likely NOT responsible for the FTT.

In fact, if the ASD is truly small, then another cause for the FTT (or reconsidering this diagnosis) should be entertained.

How sure are you (more to the point, how sure is the pediatrician) that a) your child has FTT, and b) there is no other cause for it?

So again, there are two important questions that can be answered without traveling to the States. Is the FTT real, and if so, have all other causes been ruled out? And how large is the ASD?

If the ASD is very small, that makes ASD-induced FTT very unlikely - and watching and waiting becomes not such a bad idea. In this case, the diagnosis of FTT would need to be re-addressed (is it real?) and reassessed (what else can be causing it?). If the ASD is large, however, then it is much more likely to be causing FTT, and much less likely to close on its own.  THIS would be the situation in which you're between a rock and a hard place. Before you admit that's where you are, in other words, perhaps you ought to reexamine your premises.

I've gone a lot farther here than I ought to go online, so I need to reiterate my usual disclaimer. Please let me remind you that nothing I've said should be construed as specific medical advice. My statements should be construed as an attempt to impart general information based on the description of the problem you've given. I'm not even trying to second guess your doctors - merely pointing out apparent inconsistencies between the information you've given me and the recommendations they've made. When such inconsistencies appear between a patient and a doctor, a second (or third) opinion often helps in sorting out the differences.

Most doctors, by the way, do not recommend antibiotic prophylaxis with ASDs.

I am aware of some of the shortcomings of the Canadian health care system, and that's why I do not favor instituting such a system in the States. However, severe problems exist in our own health care system, and I believe that radical solutions are necessary. (That necessity will not become apparent to the majority of my countrymen until we have another recession.) If you're interested, visit my OTHER website for a description of the fundamental problems with the U.S. health care system, and for some potential solutions: www.YourDoctorintheFamily.com.

Once again, I sincerely wish you the best.

DrRich

From: BearHost
To: HeartDisease.Guide

Dear DrRich
Thanks for explaining more about the situation and for putting me more at ease. To answer your questions Stefan has had all the digestive tests done already and has ruled out the following:

metabolic disorders
endocrinologic disorders
thyroid disorders
PKU illness
Cystic Fibrosis
Enzyme Deficiencies in the instestine
Absorption problems

The only causes found to cause his failure to thrive are two found:
-Large ASD (small patent foramen ovale although not the cause of FTT)
-Gastroesophagal Reflux (spitting up after feedings)

Well the ASD is a big one according to the doctor but they don't operate until age 3 here. So I am waiting and seeing. He did say he would operate if it was still this size and still causing growth problems.

Well I don't know the exact size of the ASD but will hopefully find out that information from my doctor the next time I talk to him.

Thanks for all your advice on this thread. I know and understand that you are limited as to what you can tell me about my son's situation and I also understand that you can't tell me more than a perspective or opinion on the situation. I know that physical examinations overrule email conversation. I am just very thankful that I did discuss this with you and thank you for your time and patience on this matter.

I will keep you updated on the situation in the future. Once again thanks for your expertise on my son's situation.

Sincerely
Mrs. B

From: Robin
To: HeartDisease.Guide

DrRich:

I just happened to be reading the conversation between you and Mrs. Bear and wondered if going to the University of Michigan was also an option for Mrs. Bear? I don't really know if it would be that much cheaper for her, however, I live about 1 hour and 15 minutes from the University of Michigan and would be more than willing to invite her and her husband and child to stay free at my home while they seek treatment for their son.

Do you know if the University of Michigan could help them?

Robin

From:HeartDisease.Guide
To: Robin

I don't know if Mrs. B is still monitoring this forum, so I've sent her an e-mail alerting her to your message and your generous offer.

I don't know specifically about the U. of Michigan pediatric cardiology service, but the U. has an excellent reputation in other areas of cardiology, and I expect the peds is also excellent. If Mrs. B is interested, I'd be willing to contact one of the adult cardiologists I know there for a recommendation.

Thanks for your participation in this forum, and for your obvious concern and generosity.

To:Robin
From:BearHost

Dear Robin,

Hi! Thanks very much for your generous offer offering us a place to stay if we choose to have our son's ASD operated on in the United States. We don't have that kind of money at the moment and he is gaining a bit more now that he is being treated for his reflux problem.

As for the Atrial Septal Defect, it is being watched by his pediatric cardiologist. He will be seen again at age 3 or so. If it is still causing him problems at that time then surgery will be performed. I pray he will be ok until that age. I am reassured he will be like now and no worse.

As for the operation being performed in the United States.. well.. we simply can't afford the hospital bills because for us to get him operated on over there it would be a whopping 250 thousand or more. We being Canadian and all would have unforseen costs that are too much for us to handle. It is the reality of the situation but I am adamant with our pediatric cardiologist to be sure that Stefan is okay and not in any danger in the mean time so I am reassured right now that he is okay right now.

Once again thank you very much for your generous offer!! You are a very compassionate family and we admire you for it.

We can't thank you enough.
Sincerely
Mr and Mrs B
Nova Scotia, Canada

Come on in! The forum's fine!