My son is 3 weeks old now and was diagnosed with a medium size (1.27cm) VSD when he was a week old. For the past two weeks he hasn't been growing well and only put on 7grams a day. The paed said he should be putting on at least 20 grams a day. My questions are as follows:
1) His cardio paed said to monitor his growth for next 4 weeks, and if he is still not putting on enough weight, he may need to undergo a surgery to close the hole. Is this necessary? Are they any other form of treatment? And if surgery is recommended, when is the right time to do it, now or when is turns 12 months?
2) He went to see another cardio paed for a 2nd opinion and she prescribed him two medication (furosemide oral solution 10 mg/ml and potassium chloride) because she says his lungs is swollen. His original cardio paed has advised however that if he is breastfeeding alright, there is no need to take the medication. He has left it up to us to decide whether to give him the medication. We're confused as to whether we should start him on it and if there are any side effects to the medication for such a young baby. Pls advise.
3) Should we start him on a high calorie formula to help his growth. He is fully breastfeeding at the moment as I believe breast milk is best for him.
A ventricular septal defect (VSD) measuring 12 mm would not be considered medium sized, but large, and has a very poor chance of spontaneous closure. There is really no other method of treatment for a little baby with a defect of this size other than surgical repair. That said, these are routinely done and, in experienced hands, are well tolerated by these babies. Surgery is typically done if there is persistent congestive heart failure (CHF), where the heart is not able to meet the body’s growth needs, despite adequate medication management. There are a number of medications that can be used to manage CHF, including diuretics as mentioned by you. I must say that I don’t understand a cardiologist leaving the decision to use these medications up to the parents and how that decision is impacted upon by the baby’s nutrition. The cardiologist should have the clinical experience and education to advise you on the appropriate management of your son’s heart disease, including you in the decision making process, but making the decision process fairly easy. These medications are very frequently used in these babies and are well tolerated, as long as the appropriate doses are used and, if larger doses are used, appropriate monitoring of such things as electrolytes and the ECG is performed. I cannot say whether your son should have his nutrition changed from breast milk to high caloric density formula without evaluating him. I will say that with his large VSD likely requiring surgical intervention, changing him to formula will probably not make much difference in preventing CHF symptoms and delaying his surgery.
Well I'm not a doctor but I have been where you are. Our daughter was born in June with a small ASD and a moderate VSD. It sounds to me like your son is in Congestive heart failure, have they mentioned that to you at all? Our daughter was in CHF by the time she was 2 weeks old: her resting breathing rate was rapid, she retracted when she breathed, sweat when she was trying to nurse etc.. She was also started on Lasix. As she got worse they added medications and she is now on Lasix, Spironolactone and Digoxin to help her heart.
Does he have problems breast feeding at all? Is he sweating while nursing? How much does he feed? Is he just eating for short little amounts of time before falling asleep?
I'm really surprised they're going to let you go another 4 weeks for his weight. Our daughter was diagnosed with failure to thrive at 9 weeks, after she had only 3 weeks of slow gain (she gained 20 grams in a week), and they admitted her to the hospital and inserted an NG feeding tube. Also, as soon as her weight gain started slowing they put her on concentrated calorie formula (27 cal). I would definitely suggest talking to your doctor about that.
As for the Lasix - if the doctor prescribed it, give it. They're not going to put babies on medications if they don't need it, especially where his lungs are swollen. His weight gain may pick up too, if his little heart doesn't have to work as hard.
For surgery, again, they wont recommend it unless necessary. Once babies enter failure to thrive, the doctors won't mess around too long. That indicates that their heart is just working too hard for them to grow - that said, I would also ask them if they can try different medications first. Normally they will try and manage the heart failure with medications before they try surgery - THEN if that doesn't work, they'll do surgery. Also, they'll normally try the NG tube to see if that helps them pick up on weight gain - the bigger the baby, the better chance they have at recovery.
Our daughter will be having her OHS in October, she'll be 4.5 months old. As I mentioned she's currently taking those 3 meds for her heart, has an NG feeding tube in, and what we do is give her 27 cal formula mixed half and half with my breast milk.
If you have any questions or want to talk, please feel free to email me: ***@****
mshanson was right so I'm going post my reply here and I already sent a message back toyou.
I'm Cindie and I would love to answer your questions. let me remind you I'm not a medical professional (Yet, I wanna go to school 2 b an RN)My son had 2 smallish ASD and a very large VSD at birth. 35w5d.sorry but my reply may be long.
YES, TJ had surgery, and he was 10 weeks old but since he was a month premature his adjusted age was 6 weeks when he had his surgery. and I was involved as much as possible from holding him til they took him in and once he was off the respirator I got to hold him, then feed him.
initially it took 45 minutes for 2oz of formula because he had no energy however when we got to feed him for the first time he took the 2oz in 5minutes!
the surgery is very invasive, and major, however, personally, I'm glad my son had it done. there is a special mesh they can use, like a little "screen" and what happens is theheart tissue grows into that. there are some surgeries that are done with a catheter which leaves minimal scarring and less pain.
What your son's Dr is going to do is check his weight every week to see if he is gaining weight. if they determine there's failure to thrive, when he either doesn't gain weight or actuall begins to use it. they'll weigh their options
On your post on the Cardiac board,you stated that his original heart doctor said as long as he has no problems feeding....
You said he falls asleep and breathes hard. if you can, the next time you breastfeed him take a look at his chest and tummy. Does it look like his lungs are sucking in some on the sides?
those are called retractions (meaning it pulls back) he gets tired from suckling and struggling to eat which is why he falls asleep.
that means he's NOT BFing fine because he's struggling to get food down to the point he tires himself out, in my opinion (as a mommy) he needs the medications because I learned the tough way what happen if you wait too long. and if he throws up after the potassium call the doctor about it. if your going to try a bottle use a low or medium flow (i suggest medium) and see if his symptoms stay the same.
Treatment options are here: http://emedicine.medscape.com/article/892980-treatment
it describes both medication treatments as well as surgical ones. if you need any help with any medical terms feel free to ask.
Lasiks= furosamide so since they prescribed it he needs to take it. The Lasiks (fursomide) causes the body to urinate out extrafluid which makes the strain on the heart and lungs less.however, because of how it works it can caues his potassium levels to get low. If either potassium or calcium get too low it can cause heart problems an arrythmia. Lasiks causes his body to urinate potassium, which is why the doctor wrote a prescription for potassium chloride
Are you able to pump your breast milk to figure out how much your making at each feeding?
Because you can always pump, and use a bottle with nipple that's approved for breastfeeding mama' (that way he can go back to the boob easier)
You can also get a protien formula additive which will raise the calories and help him gain weight. if it seems you aren't making enough milk to satisfy him you may want to consider a high calorie preemie formula which is 24 calories.
be sure to speak to your son's cardiologist about my suggestions and the othermember's suggestions as well
TIP: Make a list of any questions you have for the doctor/cardiologist, keep the list or copies around, like 1 in the car, 1 in your house...etc so you can add any you think of before you forget it.
bye and good luck with the medications, and plz keep us updated
Thank you both for your invaluable advice. I'm feeding him twice a day with formula now on top of breastmilk. Using Abbott's NeoSure for low birth weight baby catch up growth - 22 cal. Do you think this is good enough?. We managed to spoon feed him 2 oz in 25 mins today.
Cindie, could you share your list of questions with me? =) Appreciate it.
Hi, I also would like to know the where ur son's VSD is it sub Aortic, Mid muscular or apical. Meaning below aortic valve, or in the middle or is lower in the ventricular septum. There is also other form a treatment available ie a device is placed in the heart with the help of a catheter and usually the patient goes home in next two days and lives life like any other person of his age. Since I don't know where r u from if its US then they don't use the device in Peri membranous (Below aortic valve) because of occurrence of heart block since it sometimes is very near to AV node. If its in the mid part or lower then I am sure you should also take opinion of ped cardiologist regarding the feasibility of using a device. If you are from any other place like any Asian countries then you can also get a device for Peri membranous VSD. So take an opinion of ur doctor and he will tell u the possibility of using a device. Till then take care and trust me God will do what is best for ur boy u have all the wishes of all of us here.
That is really very strange if you were not informed regarding closure with a device. Since it is mid muscular then it has gud chances of closing with a device.The device closure is used widely all over the world and the only US FDA approved company manufacturing these devices is Amplatzer. You can visit the site http://www.amplatzer.com and read about the devices. Since you are in Malaysia I am very sure they must be using these devices. So in your next visit do speak to your doc for device closure and I think the size you mentioned is 12mm and I think they can take a 14mm or 16mm VSD device. But before that he will take the call if this can be done. So till then take care
crosalind~ so sorry it took so long to reply again. my lil guy mason just started getting around lke crazy..
cuckoo~ wow! very impressed with your questions for crosalind. I wasnt aware of those specifics at all. the devise you speak of, is that the one they thread via artery? I didn't check the site becaues i"m only on for a minute. one son is in my lap the other has crawled under my chair and is crying because he thinks he's trapped.
1 - how long should surgery take
2- how long do children with that sort of defect usually stay in hospital
3- and if your baby still isnt gaining weight well is there anything you can do to ensure he's well as possible regarding any vaccinations?
4- will there be any extra waiting before you can take your baby out in public after he comes home from the hospital
my doctor I believe wanted us to wait on vaccinations until after surgery since they were due within 2 weeks before surgery and keep him at home until surgery so he didn't get sick.
Yes it is the same device that doctors usually used and is place Via femoral vain that is in your groin and with the help of a tube like catheter they place these device in ASD, VSD PDA and if I am not wrong about 60% of these defects are now closed with these devices and in some cases where the doc does not find the feasibility they refer the patient for open heart surgery. So if you find time the website I mentioned in my last post you visit the same and may be you will have an idea about what I am saying.
And crosalind please do keep us updated regarding your next visit and your doc's opinion regarding the procedure.
I just want to update you on the progress of my son. He had a checkup 3 weeks ago and his VSD has shrunked from 1.27cm to 0.4cm! I think it's a miracle! :) His growth is also ok as per his doctor. He was born at 3.75kgs and currently weight 5.8kg (he is almost touching 3 months old now).
Have you heard of such closure of VSD hole? I hope it will shrink even more and his next check up is due in Dec'10 only. At size of 0.4cm, what's the likelyhood of him ever needing surgery? Will if affect him physically even if it does not closed completely but remain at such a size? Appreciate all advice and thank you for encouraging me previously.
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