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Downs baby with VSD 8mm
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Downs baby with VSD 8mm

Hi!!  i am hoping you can assist.
My downs baby was initially diagnosed (using echo) with a pre-membraneous 3.5mm VSD (at one day old, following detection of a heart murmur) as well as pulmonary hypertension (latter has now self-corrected).  At a follow up appointment at 5 weeks of age (using echo) the VSD was observed to be 8mm in size.  The cardiologist has advised that open heart surgery is required in the next 1 - 2 months (no date yet set).  At that appointment no medications were prescribed.  The same cardiologist telephoned when my baby was 8 weeks of age to check how he was progressing.  When I asked whether medications were required he has arranged (almost as an afterthought) for a prescription of diuretics (frusemide and spironlactone).  My concern is that he has not seen the baby in the three weeks between the 5 week appointment and the 8 week telephone call.  My son also has mild hydronephrosis so i am concerned that the diuretics may have a negative impact on his kidneys.  He is occasionally wheezy, and sometimes breathless but is feeding (formula) reasonably and is gaining weight.  He was born 3.2kg (7.1 pounds) and at 8 weeks is 4.8kg (10.5 pounds).  
My questions are -
Should I hold off on the meds until I see the cardiologist again (a weeks time)?;
What do the diuretics actually do?;
Will there be a negative impact on the kidney?; and
Why the large discrepancy in size between the initial and second echos?
Tags: down, VSD, question
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Avatar_f_tn
Hello and welcome to our site. I wrote a reply to your questions several days ago, but my computer went off line and I guess it wasn't submitted. At this point your baby would have seen the cardiologist again. What did he tell you? Please keep in touch, for support; you probably are overwhelmed at times, I'm sure. Tale care!
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Avatar_f_tn
Hiya

Thank you for your thoughts!!  No, I dont seem to have a response so youre right, it probably didnt submit before your computer crashed. Yes, I saw (unfortunately) the same same cardiologist who confirmed the hole was in fact 8mm and surgery was a must but was unable to prvide any other information until I see the cardiac surgeon, latter who will hopefully be able to shed some light and provide a surgery date. Apparently teh size discrepany relates to angles of meausrement (???). I was advised the diuretics are a low dose and should take  some pressure off the lungs by reducing fluid levels.  Im a bit sceptical on that actual effect as my son had wetter and heavier nappies prior to the diuretics.  When I advised the cardiologist of this this he just replied that we would wait and see.  I'll repeat the questions with the cardiac surgeon - hopefully he'll be more responsive.
Youre right, it is very overwhelming - we dont know how mild or severe the downs will be until our son is a little older - all we can do now is pray that its mild and that he has some quality of life.  Thanks again for your thoughts!!!
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Avatar_f_tn
Hiya

Thank you for your thoughts!!  No, I dont seem to have a response so youre right, it probably didnt submit before your computer crashed. Yes, I saw (unfortunately) the same same cardiologist who confirmed the hole was in fact 8mm and surgery was a must but was unable to prvide any other information until I see the cardiac surgeon, latter who will hopefully be able to shed some light and provide a surgery date. Apparently teh size discrepany relates to angles of meausrement (???). I was advised the diuretics are a low dose and should take  some pressure off the lungs by reducing fluid levels.  Im a bit sceptical on that actual effect as my son had wetter and heavier nappies prior to the diuretics.  When I advised the cardiologist of this this he just replied that we would wait and see.  I'll repeat the questions with the cardiac surgeon - hopefully he'll be more responsive.
Youre right, it is very overwhelming - we dont know how mild or severe the downs will be until our son is a little older - all we can do now is pray that its mild and that he has some quality of life.  Thanks again for your thoughts!!!
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Avatar_f_tn
Hello and welcome back. The angles of measurements makes sense. Sometimes if a child/baby isn't quite laying the right way and especially if you have a tech who isn't versed in doing pediatric echoes, the measurements can be off. A really classic example of this is x-rays. If a child isn't standing exactly the way he should, the result can be what looks like an enlarged heart. Scares the parents to death, and it's only something as not standing correctly for the flim to be taken. Surgery can be scary as well; I'm sure you are already feeling the stress of just the thought of that. Surgeons can do so much at this point; medicine has come so far! Intensive care can be overwhelming for most parents with monitors always going off; the nurses can help you to stay calm so talk to them often. Sometimes, if you contact the pediatric hospital social worker, they may be able to give you a bit of a tour before your baby has his surgery. They can also help you with facilities and programs to help you with your special baby. They can do SO much for babies with Downs nowdays. Diuretics work by pulling fluid from the body's tissues and can certainly help with lung fluid, which is something you wouldn't want in any baby, especially a Downs baby. If you notice he is not wetting his diaper to the degree he used to the question would be (especially being summer time): is he sweating more especially when he is drinking his bottle. Excessive sweating will lead to less urine output. If that is not the case then call his cardiologist and let him know about this so he can adjust the  levels if need be. You really do have a very special baby; he will give you a strength that few mothers will ever know! Take care
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