my baby girl born on 3rd of may 2009 has been diagnosed with a VSD + overriding aorta , she obviously have a lot of feeding problems, breath very fast , get tired while feeding. she is already under medication , spironolactopn 1x a day 3mg, lanoxin 2x /day 15 microgm, lasix 2X/day 1, 5 mg, her weight is 6.30 pounds , (2,85kg), dr said she will definitly need surgery , but how old will she have to go under surgery, can she hold until 9 month ? how early can we usually operate such a vsd?
is there any specifi risk that the medicatio dont help her to go throu and get to surgery. ?
if someone can help i will apreciated , her mom and myself are going throu very hard time right now
It sounds to me that your daughter not only has a ventricular septal defect (VSD) but also has symptoms of 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 a choice where to go—either out to the body OR through the VSD and back to the right side of the heart. In your daughter’s case, a fair bit of blood is going back across the VSD and returning to the lungs, making the lungs and heart have to work harder.
Your cardiologist has put your daughter on medications that are typically referred to as anti-congestives, medicines that can help to reduce the symptoms of CHF. However, it sounds like she is still having significant symptoms. 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). At times, a nasogastric feeding tube can also be put in to help ensure that adequate calories are delivered for growth. If she is hospitalized, sometimes physicians will give her a blood transfusion to get her hematocrit over at least 45%.
Despite all of these measures, though, your daughter will definitely need surgical repair if there is a VSD with an overriding aorta. At our institution, we have approximately the same outcomes whether they weigh 3 or 7 kg, so we don’t wait too long. She’s not too far below 3 kg, so she may even tolerate surgery in the next one to two months. Waiting for 9 months is probably not the best idea, because she likely will not outgrow her CHF symptoms. The calories that she should be using for growth and development are instead being used for heart and lung function. Therefore, waiting for a 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.
One last point: VSD with overriding aorta (sometimes referred to as a malalignment VSD) CAN also indicate a different diagnosis called tetralogy of Fallot, in which you have the above two findings as well as pulmonary stenosis (obstruction to outflow from the right ventricle) and right ventricular hypertrophy, or thickening of the right-sided pumping chamber’s muscle tissue. Do find out if your cardiologist thinks that this is isolated malalignment VSD or is tetralogy of Fallot, as somewhat more surgical intervention may be required with tetralogy.
Congrats on your new bundle of Joy. I know this is very very scary for you. Trust me been there. When my now 5 1/2 year old son Christopher was born, the doctor knew there was something wrong with his heart. at 3 days he was transferred to antother hospital where they told us he had a very large VSD and that chances are he would have surgery by the time he was 1 years old. somewhere between 6 months to a year.
Well he did have surgery but it was at 3 months of age. he did have a large VSD, overriding aorta, and 2 small ASD's as well. he went into heart failure when he was 3 days and again when he was 2 months but since he had just gotten out of the hospital with RSV, and he was weak they opted to wait a month until his lungs got stronger so he could recoup better. so he could have had the surgery even at 2 months of age. his Heart at the time of surgery we were told was the size of a walnut and the VSD was the size of a dime.
Your daughter may have to go on a special diet if she isn't on one already, a high calorie diet in order to help gain weight. Chris was 8 pounds when he was born but by the time his surgery came around he was 11 pounds and this was being feed on the high calorie diet and through a tube feeding.man he got so tired so easily.
When Chris went through the surgery he was on digoxin (not sure of spelling) Lasix and something else. she may have to stay on the lasix until after her follow up from the surgery.
I can remember when he was home, for the little bit that he was (prior to surgery he spent 3 weeks on the hospital total) I can remember him sleeping in the bassinett with my hand on his chest making sure he was still breathing. I had 3 other kids of different ages and this too was hard on them.
as you probably figured out you will have many many small feeding to give since she tires so easily. Try not to over feed her either, if she has a tube feeding this can easily happen. I know it happen a lot with Chris, his little tummy would get really round (distended) and then he would throw up, our cardiologist said that it was due to over feeding him. just give him about 1 once every hour, I would have to wake him up because that is all he would do is sleep.
I hope this helps somewhat and I hope all goes well. the surgery was very scary, but to be honest I thought it was the worst thing to ever happen to my little man, but this heart issue is actually very minor compared to other heart problems that are out there. I know when we saw those other kids and look at Chris, then I hugged him and said oh thank the Lord that is all it is.
After the surgery was hard to see him with the tubes he had.
good luck and keep us posted
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