I am the mother of a 3 year old and 7 month old daughters. They both have Atrial Septum Defect. My 3 year old will most likely be having surgery very soon to close her hole. I am just terried and frightened to death. Is this a common procedure and does it usually turn out well? I am just very worried about them. Also I have read that this is a congenital disease and is present at birth so why didnt the doctors first hear the heart murmur in my children until my 3 year old was 6 months old and my 7 month old was 2 months old. Anything you coult tell me would help tremendously I am just very worried for them. Thank you so much
I understand your concern about having surgery for both your daughters—not knowing or understanding makes it even scarier. I will say that atrial septal defect (ASD) repair is one of the easier surgeries performed by pediatric cardiothoracic surgeons, with excellent outcomes and very low risk. Obviously, without knowing about your specific center or surgeon, or the rest of your daughters’ anatomies, I can’t say for certain what the specific risks for your daughters would be. I would say, though, that open heart surgery is not the only way to close these defects. It is possible to have a device placed through a catheter (a long, hollow, skinny tube) that gets put into a vein and travels up into the heart so that the device plugs the hole. I would definitely discuss this with your cardiologist and see if this is an option. Closing an ASD is typically not an emergency, so you certainly have time to obtain a second opinion, if you feel it is necessary.
ASD’s are congenital heart defects, and are in the top five most common defects that we see. Approximately 1% of all babies born has some type of heart defects, so this means that there are plenty of babies, children, and even teens and adults with congenital heart defects. However, ASD’s are sometimes hard to find. They are the most commonly missed diagnosis by pediatric cardiologists! They can have no murmur, a normal history, a normal ECG, and a normal chest X-ray, and still be present. They are frequently found in older adults who have atrial arrhythmias (abnormal heart rhythms) during their evaluation, having been missed all of these years. I would actually say that your doctors did as well as they could by finding them when the girls were young. They can be genetic, occurring in families, as with your daughters. However, except for research purposes, routine genetic evaluation is not done for ASD’s, unless there is concern for a specific genetic syndrome.
The reason that they really couldn't hear the ASDs when your kids were fresh out of the oven, so to speak, is that the pressures on the right side and the left side are pretty equal. That means that there is not enough blood that goes through the hole to cause a murmur since the blood flows stay on each side. After a few weeks and continueing on for a few months, I think, the right side pressures drop, as they do in everybody, and then there is enough blood flow going across the hole to make the murmur loud enough to hear. A rough analogy would be like the hole is a whistle and the blood flow is your breath. Early on there isn't a lot of movement, so its like when you have the whistle hanging in your mouth. Later on there is enough pressure ( you blowing through the whistle) to hear it. I hope this helps. Good night and good luck.
I would like to correct a couple of pieces of misinformation that were posted here. First, the murmur heard with an atrial septal defect is not associated with the sound of the blood flow across the defect. The pressure across the hole is minimal, and thus there is no turbulence there to create a murmur. The murmur occurs due to the extra blood volume on the right side of the heart going across the pulmonary valve, causing a relative "obstruction" (not a real obstruction) that leads to turbulence and makes the sound that we call a murmur.
I also wanted to comment about device closure of the ASD. A scar on the chest, and other cosmetic issues, are not the only issue in consideration of how an ASD gets closed. The majority of scars, though they can be seen, are typically flesh colored and are not grossly obvious. What also needs to be kept in mind is the size and location of the defect. Certainly we lean toward device closure, as long as the defect is within a certain size limit and the device can be safely placed without it impinging on other structures within the heart. However, it is not a 100% closure rate (though it is quite high). Surgery gives a 100% closure rate. Recovery from surgery is NOT a long time; the patient is typically out of the hospital in two to three days. Though the home recovery is up to 6-8 weeks, the vast majority of kids are feeling just fine to play around somewhat in the first couple of weeks. They should not be lifted up under their arms during that first 2 months and should not have an immersion bath during that time, but they otherwise do just fine. Pain control is also quite easy, with the kids needing simple over-the-counter pain relief typically for less than a week. Therefore, I don't want you to be misled regarding what has been posted. Your cardiologist and you should discuss the various options completely so that you are fully comfortable with the understanding of the benefits AND risks to these procedures, and then choose from there.
I agree with Dr. Boris..Though my son had OHS(open heart surgery) to repair a VSD not a ASD he did great.He had surgery on Wed. out of CICU and back in his regular room by lunchtime Thurs. and home Sat. afternoonEric was actually back to his normal self before we even left the hospital,other than the NO lifting under the arms.But at almost 5 y.o. I wasn't really picking him up anyhow,lol..Eric's scars from surgery and chest tube are barely visible(check out my profile on here).I have two pics one of Eric 36 hours post-op and then 1 yr. post-op.Eric is now 10 yrs. old and 5 yrs. post-op on his recent echo you can't even see where the patch went.
But my best advice to you is talk with your child's cardio about all options for closure and ask any and all questions even if you think they might sound stupid as No question is stupid and your doctor won't think they are either.
But know ASD and VSD surgeries are the most common surgeries and have great results.It is not easy on us parents believe me,but these kids are amazing on how well they tolerate these types of surgery.
I just want to wish you the best of luck with your daughter's upcoming surgery. My son was 3 months old and had to have a VSD repair. he had to have it patched. and he also had to have an ASD repair, they stitched closed the PFO and he had something else done called a Patent Ductus Areterosis Ligation. my son's heart issue was diagnosed with in hours of birth, thankfully, the only reason i guess was he had a loud murmur a grade 6/6. they say that most times you can't tell until at least 3-4 months. this is what I was told.
Also what helped my husband and I was the doctors told us step by step what they were going to do. so we were prepared.
My thought at first was OMG I was so scared of his little body going to have this surgery. He did great. the doctors do this type of surgery all of the time.
Sorry, my mistake. I was trying to think of an analogy that would help explain why there was a murmur now vs. when being born. My analogy might be more correct when applied to a VSD. I've heard that the ASD murmur is caused by the volume overload, but I forgot.
I just wanted to say that I wish you and your girls all the best of luck, and I am sure it will be okay. I'm not a doctor, but I am someone who has/had Atrial Septal Defect, so I have the perspective of someone who's been through this. I had it repaired when I was 12, a few days shy of my 13th birthday. I just turned 24 a few weeks ago. I had one of the best surgeons in the country at the time, out of Columbia Presbyterian Hospital in NYC. Mine was found in kind of a weird way. I was complaining of something being stuck in my throat, and I was unusually very tired (I would fall asleep on my living room floor at 7 p.m. most nights, in the dead of summer, and sleep for over 12 hours at a time, which was not like me at all), so I had an x-ray done and the technician happened to go lower to my chest, and that's how it was found.
My surgery went really well. They repaired the hole, I stayed in the hospital for 5 days, and the only restrictions I had were that I couldn't play gym for 3/4ths of my 8th grade year, or lift heavy objects, so my books had to be provided for me in the classrooms for most of 8th grade as I couldn't lift a backpack. My mom had to pound my back with a suction-type object that was used to break up congestion that could've built up by my inactivity, and the only thing I have to do now is take antibiotics when going to the dentist. I go to my cardiologist once a year now for routine check-ups, and generally, I've been okay. I do have a scar down my chest, which is in the shape of an exclamation point because I had to have a drainage tube as well, but I'm okay with that. It is noticable, but not so much so that anyone asks, and I barely notice it, as I've had it so long I'm used to it by now. They make creams that could lessen it over time (such as maderma, which they even have for kids), or popping vitamin e tablets and using the gel on the scar to lessen it. If you have any questions or just would like to talk, I'm always available.
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