Hi, my newborn is 15 days old now. VSD was detected since she was born. She also suffered Jaundice but had 2 photo therapy treatments for 24 hours each and it got treatable. We are noticing heavy breathing constantly especially during feeding times. There is no sweating and the heart rythum is perfectly normal as doctor said. The hole in the heart is as big as 6.5 mm. She was seen by 2 doctors. The first one reported after undergoing an echo that the hole has 40% chance of closing and should have surgery to close it. The second doctor suggested to wait until she is 3 months and stay under supervision and there is 90% for the hole to close until then. They both prescribed Lasix and Lanoxin for her to start immediately. I know that Lasix has some side efects as to pottasium loss and water loss, is it dangerous for a newborn to be taking these medications and another question why the big difference in chance between 2 doctors concerning the closure of the hole. I am really worried for my baby. Will this defect lead to heart failure or lung disease or even death??? Is it safe to use the medication? Is it recomended to go for surgery?? and when? I would appreciate if you could reply in details. Thank you.
First off, I don’t want you to worry about this. I know that it’s scary, but a ventricular septal defect (VSD) is one of the most common congenital heart defects that we see. I don’t know how big your daughter is (premature vs. term, weight, etc.), but it does sound like she is having what we call congestive heart failure (CHF). This occurs when the heart is not able to meet the body’s metabolic needs. In adults, CHF occurs when the pumping function of the left ventricle is diminished, such as after a heart attack. However, CHF is different in children like your daughter. The pump function of her heart is most likely fine, although I can’t tell for sure with the information you’ve given me. What is happening, though, is that whereas blood returning to the left side of the heart would just go right out to the body, because there is only one pathway out, now blood has to “decide” where to go—either out to the body OR through the VSD and back to the left side of the heart. Since the resistance to blood flow across the lungs is lower than that of the body, and since blood (like any good fluid) wants to go to the path of least resistance, some of that blood is going to go across the hole and recirculate back through the lungs. This causes a few problems. It puts extra blood volume through the lungs, which makes the lungs stiff and thus makes it more difficult to breathe. It also makes the heart work harder, because it has to pump more blood volume than normal. Finally, the kidneys, which have the job of maintaining the body’s fluid status, hold on to more fluid and salt, because they think that they’re not getting enough blood flow to them; this just makes things worse.
One thing, though—CHF does not mean that she is dying, nor does it lead to lung disease. If it was untreated, it can eventually lead to death. But, your cardiologist has put your daughter on medications that can help to reduce the symptoms of CHF. These medications are routinely used in the treatment of CHF and, when used in appropriate doses, are quite safe and helpful. If these don’t help, other things that can be done include putting in a nasogastric feeding tube to help ensure that adequate calories are delivered for growth. The caloric density can also be increased to as much as 30 kilocalories per ounce (normal formula as well as breast milk has a density of only 20 kilocalories per ounce). If she is hospitalized, sometimes physicians will ensure that her oxygen carrying capacity is optimized by giving her a blood transfusion to get her hematocrit over at least 45%. The goal is to have her grow enough to close down the defect enough to limit the amount of blood flow recirculating to the right side, which may be all she needs.
Despite all of these measures, though, sometimes these patients end up needing surgery. At our institution, we have approximately the same outcomes whether they weigh 3 or 7 kg, so we don’t wait too long if the heart failure is not controlled adequately. The calories which she should be using for growth and development are instead being used for heart and lung function. Therefore, waiting for a very long time will only make it harder for her to do well in her surgery and to heal from it. The good news is that, despite how desperate it seems that things are now, most highly experienced pediatric cardiac surgical centers are able to successfully close these defects and manage these children in the post-operative period so that they are able to start having a normal infancy, with otherwise relatively normal growth and development.
As for the medicine, yes it is safe. The general purpose of the Lasix is to help keep down the volume of blood that the heart has to pump. The Lanoxin (digoxin) is used to keep the heart rate regular and to help the heart squeeze more efficiently.
As far as the probability of VSD closure, I can't find any statistics. Depending on how your kid is tolerating the medicine and how the kid is tolerating the VSD (pretty well for right now), they may put off surgery to see if the VSD can close itself off. I think they are doing the right thing by not jumping straight to surgery. The longer you can delay surgery, in general, the better off the result will be for your kid.
Will the defect lead to heart disease, lung problems, and death?
If left untreated, then there would be a strong possibility. However, you are getting treated so that reduces these risks immensely. Untreated, the extra blood volume would eventually disease the lungs by "beating them up" with the extra pressure and volume. This is why your newborn is taking the lasix, to lessen this load volume. This is also why the pediatric cardiologists will monitor the size of the VSD along with getting the lung pressures with echograms.
As far as surgery, there is another option that may be available to you depending on the institutuion and the place where the VSD is located at. They can do a minimally invasive cath procedure and put an occluder device into the VSD, closing the hole. The other option wold be open heart surgery. Obviously, as long as your newborn is healthy and gaining weight, the best option right now is to wait and see if the VSD will close on it's own.
Just wanted to respond to this, my youngest son was born with a very large VSD, he too was in CHF with the heavy breahting, failure to thrive and put on extra califoic milk and 2 types of diuretics. WE were told the same thing that they would monitor him very closely for the first 3 months, they then decided to do heart surgery but 6 weeks later changed their mind and said in fact they did think the hole was very slightly smaller, so again we went back to close monitoring. He also had recurrent chest and ear infections. After a year, the cardiologist then again decided it was not going to get any smaller by itself so again suggested heart surgery, and when the main appointment came round again 6 weeks later the senior cardiologist again changed his mind and said they would continue to monitor, all very stressful! Anyhow jack will be 3 in October, he is off the diuretics, normal size, chest infections and ear infections are very few and far between, he is running around and behaving like any other 3 year old and you wouldnt know and best of all the last 3 monthly appointment we had, they have put him onto yearly check ups. Its taken 2 and a half years but his hole is now small enough for them not to be too concerned over, he just had mild-moderate valve leakage as well.
I hope this has given you some hope, have you tried HeartLine, I found them very supportive when we were going through the whole will they operate wont they operate bit.
Good luck and hope your little one is doing well x
Hi Just also want to comment my youngest son who is now 5 yeas old had a large VSD and some ASD issues as well Chris was sick in the beginning and on the 2 meds as mentioned.they he went into heart failure at 3 months of age, they planned on doing surgery anywhere from 6 months to 1 years of age. however when he went into heart failure they put him on captipril (not sure if I am spelling it right) he had a hard time feeding and everything. it took about 15 minutes to get him to eat 1 ounce. he was also on a high calorie formula (looked yucky too) this helped him at least maintain his weight.) when he went into heart failure to help him they put in a tube feeding. that way there it helped so he would tire too easily and we could get the calories into him. Chris was born at full term and weighed 8 pounds, which is actually big for a baby with heart issues I was told. when he went into sugery he weighed 11 pound.(about 5 kg)
The medication is fine for him.
Chris was 3 1/2 months old when he went through surgery and he pulled though just fine. they might after surgery if they do do it most likely will be kept on the lasix.
I hope all goes well for you guys, and I honestly know how scary it is.
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