infant heart murmer

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

greg

Well-known member
Joined
Apr 29, 2006
Messages
110
Location
Page, Arizona
Help please.
I just got off the phone with my son. He and his wife just got home from a pediatriac appt. with their 3 month old son.
The Ped. says they need to get with a Ped. Card. and check the babys heart murmer. The murmer was present at birth but went away as they normally do. Now it's back.
They have an appt. for Friday but we are all very worried.
A little history is; I had a BAV replaced with a mechanical valve 11-18-2003. His mother has known about a heart murmer for years. Like I was, she has been told it was no big deal. My nephew had OHS as an infant to repair a mitral valve. Family history on both sides cause us lots of concerns.
If there is anyone on the site with information or expierence I would sure appreciate some feedback.
Thanks in advance.
 
Hi Greg,
I cant help out with what it might be as heart murmers in babies can turn out to be completely innocent as I hope your grandsons is! Or can turn out to be all sorts of CHD's ranging in complexity.

What I do know, although it may not feel like it now, is if that the earlier any possible CHD is found, the better!
That way the docs know what they are dealing with, the baby will be properly monitored and there will be no undetected condition causing more serious problems later on.

There's quite a few heart mums here whose children were diagnosed at a young age, if not before birth, who I know will be more than willing to help should a CHD be diagnosed. My daughter was diagnosed just before she was a week old and I remember the total fear and panic of the diagnosis time. But now with hindsight I am so pleased it was picked up on as it can be much worse if left undetected and untreated.

I've waffled I'm sorry but will be thinking of your family on Friday and looking for an update then

Love Emma
xxx
 
Hi Greg, I know what it is like we have alot of CHDs on both sides of Justin's family and of course Justin who was dxd at one day old when he turned Blue.
I'm glad the ped is sending him to a ped card,(don't worry about making sure the ped card speciallizes in chd , they all do) instead of just assuming it is an 'innocent" murmur.
I'm not sure what you are looking for help wise, if it is a could site to learn about CHd www.tchin.org is the best. but really until you know what the dx is (and it can still be an innocent murmur) it might be more confusing then help since there are 35 different CHDs and treatment ect is very different depending on the chd or combo of CHDs.
IF it turns out your grandson does have a CHD and needs treatment, I belong to a few support groups and orgs so would be more than happy to give you links, there are even groups just for grandparents, but a few of the groups i belong to have parents and a few grandparents.
has he showed any other symptons that might cause concern? such as trouble feeding or sweating alot when feeding ect?
if you have any specific questions feel free to ask, i'll say a prayer Lyn

ps i wanted to add IF your grandson has a CHD, I have a few friends that are heart Moms that live in Az, also what ever the dx is I probably could give them the contact info of others w/ the same dx
 
Lynlw,
I don't know what I want help wise either.
I guess I worded that wrong. I'm just looking for any information at this point.
I know we need to wait for the Dr.
Reading about Williams Syndrome, he doesn't fit. In fact he has gained and grown at a very good rate with no other indications.
I know there are lots of other things both good and bad. I'm just worrying right now.
Hope to be able to report 'no problem' soon.
Thanks again
 
I'm confused why you were reading about Williams syndrome, did the ped mention that as a possibility? actually my neighbors 20 year old son has williams, Lyn
feel free to look at justin's site, even tho he had 4open heart surgeries and a pacer, BE he is really active and has a good life, heck he was even snowboarding the other day
 
Greg, just wanted to wish your family as much peace as possible as you wait to find out what the issues are with your grandson. I pray it will be "just one of those things", but if it isn't, take some small amount of comfort in the fact that there is so much more medically possible now, than there even was 10 years ago.
 
Lynlw,
The only reason I read about Williams is it came up when I did a search on infant heart murmers.
I've been looking at everything I can find----things I didn't do for myself so now I'm trying to do it for them, I guess.
 
that's a pretty rare one and actually not all williams kids have heart issues, my neighbor doesn't, but he does have the facial features. I think you will drive your self nuts if you look for anything that can cause a murmur.but I know you want to reseach, so ...
IF it is any consolation, you could probably rule out all the cyanotic chds, like transposition of the great vessels, Tetrology of fallot ect, or he would most like be blue by now, (justin turned blue at one day)
and you probably can rule out any of the hypoplastic left heart/Hypo Plas right heart/ or single ventricle type defects because he probably would have crashed by now
IF you really want to learn about every chd go to the chin site I listed co to communuty then check the portraits, and you can read kids stories by DX here's Justin's then jnjust go to the top and click by DX http://tchin.org/portraits/justin-2.htm
 
Its hard not to worry yourself silly and search for the answers to these questions before you see the specialist. Remember that there is still a good chance that the murmur is innocent or is something that wont require intervention. 2 of our 3 kids have a BAV and have no problems or restrictions, so dont panic just yet.
 
Hi Greg,
Just wanted to let you know I'll be thinking about you and saying a prayer for some good news on Friday. I have 4 sons: 2 have BAVs (and were also both born with VSDs), 1 has an innocent functional flow murmur, the other no murmur at all. Of the 2 BAVs, 1 boy is very stable and showing no signs of problems, VSD closed on its own; the other has regurg as well as a dilated ascending aorta & aortic root, open VSD and is in the waaaay back of the waiting room for surgery. I certainly understand the stress and anxiety you all are going through now as you await the appointment on Friday. Hang in there and I'll be looking for your post on Friday, hopefully good news.
Jen (Andrew's Mom)
 
Screening Famiily Members for BAV

Screening Famiily Members for BAV

Hi Greg,

Bicuspid Aortic Valve disease is inherited in families. No one can predict exactly who will be affected, and to what degree, so it is best to screen all family members - medical literature mentions first degree relatives, but I encourage people to branch out beyond their immediate family circle. Sometimes parents are diagnosed after first having it found in their child. In your family, you already are known to have BAVD. So your son, as well as your little grandson, and others in your family should be checked also.

BAV disease can be a very "big deal" at some point in people's lives. Please be sure that your own aorta is monitored, because having the BAV replaced does not address issues with the aorta itself - undetected aortic aneurysms are dangerous.

You may find medical references and additional information at www.bicuspidfoundation.com


Best wishes to you and your family,
Arlyss
 
greg said:
His mother has known about a heart murmer for years. Like I was, she has been told it was no big deal.

A little off topic, but I hear this a lot, about how someone has a "heart murmur." We're all pretty smart about this stuff but I hear other people use the term as if it's a diagnosis, rather than a symptom. A murmur is like a fever, it means something is wrong. I think I've read that innocent murmurs in children are common but are rare in adults. Does your wife know the cause of her murmur? I'm just wondering because it's confusing to me. It seems if you have a noise that could mean a valve problem, it should be checked out.
 
Lynlw said:
I'm glad the ped is sending him to a ped card,(don't worry about making sure the ped card speciallizes in chd , they all do) instead of just assuming it is an 'innocent" murmur.

I respectfully dissagree. All pediatric cardiologist do not specialize in CHD. They may in some parts of the Country, larger city's maybe. But we can't make that assumption.
I would be sure the cardio is CHD specialist. My brother in the upper Detroit area had a son with a "murmur" that lasted longer than it should, and it took him quite a few phone calls to get to a pediatric cardiologist that is a CHD specialist.

Never hurts to ask the question to be sure, Greg.

Just my $0.02

Ben
 
Ben Smith said:
I respectfully dissagree. All pediatric cardiologist do not specialize in CHD. They may in some parts of the Country, larger city's maybe. But we can't make that assumption.
I would be sure the cardio is CHD specialist. My brother in the upper Detroit area had a son with a "murmur" that lasted longer than it should, and it took him quite a few phone calls to get to a pediatric cardiologist that is a CHD specialist.

Never hurts to ask the question to be sure, Greg.

Just my $0.02

Ben


Ben,
I have to agree with Lyn...
What is the Job of a Pediatric Cardiologist?
Many people understand that a cardiologist is a physician who specializes in the
diagnosis and treatment of heart disease. Most often, we think that heart disease occurs in
adults who suffer from high blood pressure or those with high risk behaviors as smoking
or high cholesterol fatty diets. In our society, there is much emphasis on how to maintain
a healthy lifestyle to avoid heart disease in later life.
Not many people realize that there are some patients who suffer from heart disease
without ever smoking a cigarette and some who are afflicted with heart disease even
before their first birthday. Heart disease can affect adolescents, young children or the
fetus in the womb. These patients are cared for by a pediatric cardiologist.
As a pediatric cardiologist, I am a doctor who is specially trained in the detection and
treatment of heart disease in children. After graduating from Universite Catholique de
Louvain Medical School in Belgium, I trained in pediatrics and then in pediatric
cardiology for six years at New York University. I am a board certified pediatric
cardiologist and I see patients at the Bassett Healthcare Clinic in Cooperstown and
Bassett Healthcare Oneonta. It is my goal to bring much needed pediatric cardiology
services to our rural area.
There are two types of heart disease affecting children -- congenital heart disease and
acquired heart disease.
Congenital heart disease is present at birth due to the abnormal development of a baby?s
heart in the early stages of pregnancy. A pediatric cardiologist is able to detect the
presence of heart disease in a fetus with the use of echocardiogram equipment to obtain
an ?ultra-sound? image of the heart. A fetal echocardiogram can provide information to
help evaluate the structure, function, and arrhythmia of the fetal heart.
Only a small percentage of the population is likely to develop congenital heart disease. A
nurse midwife or obstetrician monitoring an expectant mother who has risk factors for
congenital heart disease would recommend their patient for evaluation by a pediatric
cardiologist. These ultrasound examinations are available locally in Cooperstown.
Common referrals to a pediatric cardiologist include youngsters who experience heart
murmurs, irregular heart rate, palpitations or fainting episodes. An evaluation includes an
EKG (a non-invasive test that looks at the electrical activity of the heart) and
echocardiogram (which provides an ultrasound image of the heart.) Occasionally it is
necessary to monitor the young patient?s heart rate for 24 hours.
Many heart problems in childhood are outgrown and may just need to be monitored or
perhaps treated for a while during the growing years. Some ailments require medication
or surgery to correct the problem. Pediatric heart surgery is offered in Albany, New York.
Acquired heart disease is varied and can develop at any age in life. The most common
heart diseases seen in children in the United States include hypertension, heart damage
due to infections or viruses, abnormal heart rhythms or endocarditis (inflammation of the
heart lining.)
A child suspected of suffering from heart disease might exhibit symptoms such as chest
pain, fainting, and irregular heartbeats. These patients would be referred to a pediatric
cardiologist from a primary care provider or a pediatrician. After a referral, the pediatric
cardiologist conducts an evaluation, recommends a treatment plan and follows the
progress of a child patient with heart disease. In addition to a physical examination, the
pediatric cardiologist would consider the family?s medical history, past medical history of
the patient, body mass index, and life style concerns.
Like many other medical providers, my interest is in preventing disease. Consequently, a
portion of my time is devoted to research that delves into the factors contributing to heart
disease among children in our society, such as child obesity, lack of exercise and poor
nutrition. Because of my attention to this area of disease prevention, we have instituted a
Pediatric Preventive Cardiology Clinic in Cooperstown, which brings nutritionists,
exercise physiologists, and other health care providers together to help young patients
and their families adopt a lifestyle that will prevent the development of acquired heart
disease.
Heart disease is a serious matter, and heart disease in babies, children, and adolescents
requires specialized medical attention. As a pediatric cardiologist, my goal is to help
patients get the care they need to live long and happy lives.
Veronica Schmer, M.D., is a pediatric cardiologist
 
greg said:
Help please.
I just got off the phone with my son. He and his wife just got home from a pediatriac appt. with their 3 month old son.
The Ped. says they need to get with a Ped. Card. and check the babys heart murmer. The murmer was present at birth but went away as they normally do. Now it's back.
They have an appt. for Friday but we are all very worried.
A little history is; I had a BAV replaced with a mechanical valve 11-18-2003. His mother has known about a heart murmer for years. Like I was, she has been told it was no big deal. My nephew had OHS as an infant to repair a mitral valve. Family history on both sides cause us lots of concerns.
If there is anyone on the site with information or expierence I would sure appreciate some feedback.
Thanks in advance.


Hi Greg,
I am hoping it is just an innocent murmur...

There are some great informational sites on the internet for children with heart defects. But unless you know what you are looking for, it can drive you absolutely crazy..... Trust me, I have been there. lol We all have.

What state are you in??
 
Jeann,

Maybe my term being a specialist is what needs to be the key word here.
I know in my home town there are two ped cardio's. By no means would I call either of these gentlemen "specialist". maybe that is what they would like to claim, but it is not the case. many docs claim to specialize in a specific area of medicine, but by no means doeas that ever make them a specialist or even the right doctor for your needs.

My main point to Greg, (sorry for the mini hyjack of the thread) is the fact that you need to find a doc who truely is a specialist; an is up on all of the new technology.

Again, just my thoughts.

Ben
 
just my thoughts

just my thoughts

Hi and welcome to VR. I'm a mom to a 3 year old who wasn't diagnosed with his CHD until he was 1 week old. We were told of the murmur when he was 1 day old, and followed up with a ped. cardio. However, his was one of the more serious ones and at 1 week old he was already exhibiting signs of other difficulties due to his defect. He was then diagnosed with Single ventrical along with other problems. Since your son is older, I don't think that his would be that serious.

The best thing I can tell you is make sure that your are comfortable with your ped. cardio. We were very lucky that our pc was very wonderful at explaining everything to us and making sure that we were comfortable with every decision that was made. I think that is the most important thing. She has been very open with us and I have worked to learn as much as I can about my son's condition. If I ever have a question, I know I can call them and they are there to answer any question -- even when I felt it was silly. I've even gotten involved in several conferences on children's health and attended one with my son's pc. The best thing you can do is be an advocate for your child. Always question what you are told, make sure you are comfortable with the info, and my favorite question is why to anything that is done.

I remember one time that I had a conversation with my son's pc -- and I felt like I was very competent about what I was saying and we decided together what to do about his medications and whether to change the dosage or not.

You are on the right track. Learn as much as you can, but don't get bogged down in all the medical articles you read -- as one nurse told us -- the med. info is nice and being able to look at stats. and results of tests are nice, but you know your child best. If something doesn't feel right -- have it checked out. I wish you the best of luck and keep us posted on how your son is doing. Take care, my thoughts and prayers are with you.
 
I really have no idea about the doctors qualifications. He was the one my son and daughter-in-law could get it to see first. I don't even know his name, only that he is in Scotsdale.
I know the baby had a murmer at birth and it went away. It was noticed again at a regular apt. last Monday. The Ped said she could hear it better on the front than the back and said they needed it checked out.
Jeanne, I live at the north end of Arizona (Page), my son is in the middle of the state (Prescott), and the doctor is closer to the bottom half (Phoenix area).
I don't know anything about daugher-in-laws murmer except she has had it a long time and always been told 'it's nothing to worry about'. She has never had it checked by a Cardio. That is pretty much what I was told untill my family Dr. said "Oops, it's changed, get it look at". That was early in 2003.
Right now we are just keeping our fingers crossed 'til we know more.

Thanks for all the kind thoughts, prayers and advice.
 
Hi Greg i was wonderring how you were doing,
IF it turns out your grandson, What is his name please, I like a name when saying my prayers if that is ok. anyway IF your grand baby does end up with something that needs intervention I have a very good friend who's son is seen at pheonix, she is on a parents comittee or something like that and if needed I would love to give you her contact info.
and please don't worry about the ped card (pc) qualifications, I wasn't going to say any more on the subject, but don't want you worrying. here is a link to the American College of Cardiology about PC, I think it will help you so you don't worry. http://www.acc.org/media/patient/cardio.htm#pedia
the page is a little long, if you want to read it but here's a part, that should ease your mind at least about the doctor.

pediatric cardiologist has special training and skill in finding, treating, and preventing heart and blood vessel disease in infants, children, and teenagers. In some cases, the pediatric cardiologist begins diagnosis and treatment in the fetus and continues into adulthood.
After four years of medical school, these highly-trained doctors spend from six to eight more years in specialized training. A cardiologist receives three years of training in internal medicine and three or more years in specialized cardiology training. A pediatric cardiologist receives three years of training in pediatrics, and three or more years in specialized pediatric cardiology training. A cardiac surgeon must complete five years of training in general surgery before starting a two-or three-year cardiothoracic training program. Some cardiac surgeons have additional training to perform pediatric or transplant surgery.

Qualifications
At each stage of their training, these specialists must pass rigorous exams that test their knowledge and judgment, as well as their ability to provide superior care.

Cardiologists, pediatric cardiologists, and cardiac surgeons must first become board-certified in their primary specialty (internal medicine, pediatrics, and surgery respectively), and then certified in their subspecialty (cardiology, pediatric cardiology, and cardiothoracic surgery respectively).


Again hopefully it is just an innocent murmur, but if he ends up having a CHD, there are alot of people that will answer any questions and share their experiences, feel free to email me any time, [email protected]
from talking to my heart friends, I know a few of the grandmoms (actually they are closer to my age these days and i don't know WHEN that happened lol) and as tough as it is to be a heart mom sometimes, I understand how tough it is for the grandparents because not only do they have to worry about their grandchild but have the added worry about their own baby the parents. IF you would like any grand moms to talk to just ask, I'll keep your family in my prayers, Lyn
 

Latest posts

Back
Top