heart murmur and slow weight gain *update* - Mothering Forums

 
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#1 of 15 Old 07-22-2009, 07:52 PM - Thread Starter
 
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So DS is 16 months old... 17 months in a week. We took him today for a WBV with a new ped that we are transferring to (nothing particularly wrong with old doc... he just changed his appointment scheduling and only does same day, and I'd like to be able to make appointments ahead of time).

Anyway, the new doc detected a heart murmur today that hasn't ever been detected before (to my knowledge). He said that heart murmurs are usually innocent and that, even if there is something structural going on, it's very rare that treatment is necessary. That said, DS has had slow weight gan since he was 5 months old (was 7 .bs 10 oz at birth, 15 lbs at 5 months, and is 19.2 lbs at almost 17 months--he is in the .68th percentile). So the doc said that because of the slow weight gain, he wanted to go ahead and have an echocardiogram done. We have one scheduled for Friday.

So I went and googled "heart murmur and slow weight gain." Google can be dangerous, I know. And it was talking about how often congenital heart defects that cause murmurs will also cause slow weight gain. So, outwardly, I'm saying that I'm not freaking out, but inwardly, I sort of am. I serached for heart murmur on this forum and found a few stories of babes and toddlers who needed open heart surgery. Someone please tell me not to freak out.

mommy to Christopher 2/29/08
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#2 of 15 Old 07-22-2009, 09:21 PM
 
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My 5 year old has a heart murmur that was detected when he was an infant and we went through the whole heart workup and it turns out it was just a benign murmur and shouldn't cause him any trouble.

I will keep my fingers crossed that this is the case for your son.

Martha

p.s. My guy is super skinny as well.
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#3 of 15 Old 07-22-2009, 10:39 PM
 
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My 5 year old has a heart murmur that was detected when he was an infant and we went through the whole heart workup and it turns out it was just a benign murmur and shouldn't cause him any trouble.
Ditto for my 4 year old. She was a 31-weeker and was very petite until she was about 3 years old. Her murmur was very difficult to hear at first, and not every doc could hear it.

Good luck with everything!
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#4 of 15 Old 07-23-2009, 01:19 AM
 
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I have three kids, one of them has a congenital heart defect. ALL 3 of them were very small toddlers. Same sort of growth pattern as your son. It's probably nothing. Good luck with your appointment
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#5 of 15 Old 07-23-2009, 03:16 AM
 
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My dd was born with a funny sounding heart murmur. Cardio work up turned out normal. She is almost 18 months and weighs 19 lbs. 10oz. Similar weight gain as your DS. His weight gain could be totally normal. And if he was breastfed then you should see where he is on the WHO's growth chart for breastfed babie. The weight gain may not be as slow as the Dr. thinks.

Good luck at the Dr's on Friday! I hope everything comes back normal.
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#6 of 15 Old 07-23-2009, 01:31 PM
 
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I'd imagine that most pediatricians can not accurately evaluate a child for a heart murmur. I was a cardiac nurse for years and most physicians can not accurately evaluate a murmur. Childhood murmurs are common and mostly benign. Here is a link about children's heart murmurs.
http://www.bhsoc.org/bhf_factfiles/b...e_oct_2001.pdf
http://www.aafp.org/afp/990800ap/558.html
http://www.fairview.org/healthlibrar...murmur_car.htm

An anemia check could be done with a mere finger stick. I wouldn't agree to a venipuncture. Consider increasing the iron rich foods and have a re-evaluation (auscultation) in a month or so. Or consult a pediatric cardiologist who can listen correctly.

Apparently, children (up to 80%) have an innocent murmur at some time in their childhood.


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#7 of 15 Old 07-25-2009, 08:10 PM - Thread Starter
 
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well, there is definitely an issue. He has an venous senosus atrial septal defect. In layman's terms... a hole in his heart near his superior vena cava. It is a large hole... about 50% of the septum is missing. They need to do open heart surgery to repair it. The concern with his case is that the right side of his heart is already enlarged, and he was showing pulmonary hypertension at the cardiologist's office yesterday... so they are going to do a heart cath first to evaluate all of that. He may need to go on a pulmonary vasodilator (medication) to bring down the blood pressure in his lungs for a few weeks before the repair surgery.
I did a quick google search about it all, and that was a mistake... because reading about it his particular situation (with the enlarged heart and pulmonary hypertension) did nothing but terrify me. So I'm not going to read any more about it... I've decided just to get info from the doc follow her recommendations... otherwise I just don't think I'm going to be able to cope very well... and I need to be able to cope.

Anyway, I would appreciate any and all prayers. Thanks.

mommy to Christopher 2/29/08
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#8 of 15 Old 07-25-2009, 08:29 PM
 
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Sending strength and healing energy and an easy resolution to this scary situation.


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#9 of 15 Old 07-25-2009, 08:34 PM
 
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nak

Thinking of you and your son, mama. I'm so glad the new doc caught it, so sorry to hear he needs surgery. When will he have the surgery?


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#10 of 15 Old 07-25-2009, 09:26 PM - Thread Starter
 
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Originally Posted by mbravebird View Post
nak

Thinking of you and your son, mama. I'm so glad the new doc caught it, so sorry to hear he needs surgery. When will he have the surgery?

we don't know when the surgery will be because they have to do the heart cath to evaluate the blood pressure to his lungs first. He may need to go on medication for a few weeks first. the cath is scheduled for Aug 4. I'm expecting the surgery to be within 1-3 weeks of the cath depending on what they find. The doc said this needed to get fixed as soon as possible.

mommy to Christopher 2/29/08
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#11 of 15 Old 07-28-2009, 12:17 AM
 
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#12 of 15 Old 07-28-2009, 10:08 AM
 
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Our thoughts and prayers are with you guys.

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#13 of 15 Old 07-28-2009, 10:26 AM
 
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Praying for you and for him.
There are moms here with kids who have had heart surgeries successfully. I hope they see your thread/you might post another asking for advice for pediatric heart repair surgeries so you get some been there done that reassurance.

I'm so glad the new ped. caught this.

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#14 of 15 Old 07-28-2009, 10:38 AM
 
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Oh...my heart hurts for you. I can imagine how scared you are. The good new though is that children have such tremendously high success rates with open heart surgery...he is young, he is strong, he will heal fast, and he has NONE of the issues that usually make heart surgery dangerous (he's not old...no BP issues, not blood clots, no high cholesterol, etc). Not to negate the seriousness of heart surgery...but 98% of the time people do not have successful heart surgeries because of the surrounding factors as mentioned above. Even though there is an issue with his heart, he has proved that his is still strong. Dispite the slower weight gain he has done absolutely super with a large defect.
Please keep us updated

Blessed with two BEAUTIFUL little girls: Kylie (09/06) and Maggie (4/09) :
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#15 of 15 Old 07-02-2016, 08:08 AM
 
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Anyway, the new doc detected a heart murmur today that hasn't ever been detected before (to my knowledge). He said that heart murmurs are usually innocent and that, even if there is something structural going on, it's very rare that treatment is necessary.
we don't know when the surgery will be because they have to do the heart cath to evaluate the blood pressure to his lungs first.

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