My daughter Nava was diagnosed after birth; she's now 15 days old. She doesn't appear to have any major health issues at this time (her thyroid test was clear and she has good muscle tone but she failed her first hearing test).

However, she hasn't had a heart scan. After doing some reading and seeing this is usually said to be routine at birth, I asked her pediatrician and he said since DS causes a major hearth defect if anything, and since she has no symptoms of a defect (oxygenation is good, strong enough to nurse, etc) that he's sure she doesn't have a heart problem. He said we can have if we want but there's a strong chance that if anything, it might discover some small abnormality that would have never been a problem and cause lots of undue worry etc.

(I should note at this point insurance has nothing to do with it and we aren't in the US but at a very highly respected hospital in Thailand)

My question is--should I insist on a heart scan regardless? I quite like this doctor (UK trained) and want to trust his judgment but when the NDSS's new parent pack says: "Doctors routinely screen for these conditions because some, such as a heart defect, may be present even if no symptoms are readily apparent", I have to wonder!

Quote:

should I insist on a heart scan regardless?

YES! YES! YES! Please insist on one for your daughter.

All kids born with DS here in Ireland are given routine heart scans at birth regardless of their breathing, etc.

Congratulations on the arrival of your daughter.

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Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school

I would say YES! Have the heart scan.
The are international guidelines to follow as to what should be checked at which point in these children's lives. Not all countries are doing a great job following these guidelines.
We live in Norway, and in my country, doctors have become thoroughly aware of these checklist only the past 6-7 years. When my daughter was born, we were told we didn't need a scan, either, for the same reasons your doctor pointed out to you.
Turned out she had an ASD that closed on it's own when she was 2, which her cardiologist followed once every 6 months until it was gone.

I have to disagree with your doctor; I'd rather find a small heart problem that will resolve by itself (we actually did!) than chance it, and find out there's a bigger problem than anticipated - and having to deal with the consequences of that. Better safe than sorry.

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Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

I say YES YES YES also. Just because everything is looking good now, doesn't mean that there isn't a small hidden issue. Here, if a child is born with Down Syndrome, that's the very first thing they do. Better to get things cleared now, then to have a surprise later. Best of luck.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

I agree with everyone here-ABSOLUTELY! They need to do some type of test-probably an Echocardiogram. Almost all babies with DS have a PDA that stays open a little longer than typical babies, and they will need to make sure that hers closes on it's own in time. Plus there are so many other, more serious, issues that could be asymptomatic(sp?) at this point.

And yes, that is pretty much the first test done at hospitals here.

Good luck, and I hope that all of her tests are negative and that she has a very healthy heart!

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Amber Chase
Mom to Caroline and Philip

www.atlantadsaa.org

The thinking of "they seem fine now" and missing defects is the exact reason echos on babies with DS became routine!

"Err on the side of caution" is the rule to follow!!! What your pediatrician may not realize is that sometimes the larger the defect, the less noise it makes. And, what may be "minor" today can cause a child a lot of difficulty a few months down the road.

My Angela had an echo at birth, which showed only a small PDA (would still need to be repaired, but not until she was a little older.) That PDA made no noise at all. I was supposed to bring her back to the cardiologist for another echo at 6 weeks old, but she'd just gotten out of the hospital so I blew it off. I figured if there was something amiss, they would have picked it up on that first echo. When she was 3 or 4 months we were scheduling her for GI surgery, and surgeon insisted we get the follow-up appointment done first. Ummm yeah, she had a HUGE ASD (11 mm) that was not detected on that first echo, nor was she at all symptomatic of the problem.

So yeah, err on the side of caution. 80% of babies with DS have defects requiring repair.

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~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

YES please have a scan. My son had a heart defect at birth that his body sort of masked. On his initial NICU stay they didn't think he had a heart defect, then the story changed to he *might*. He had surgery at 5 weeks old for a very large VSD. There were quite a few surprised doctors.

Just want to echo all YES's! Ethan had a heart scan at 1 day old and it's a routine scan for all newborns with DS in the UK also. He doesn't have any heart issues but it was good to have the scan to confirm this!

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

We kind of had the same experience. I had no idea how important it was to have an echo, and my doctor did not seem concerned, so
I wasn't. He told us we would do it at some point. And actually, I am okay with that advice, but am probably in a minority here. BUT, I do think your daughter should have a scan, if not immediately, definitely in the next couple months. If she is doing great right now, that is a good indication that she is fine. Charlie had his echo at 3 months when we were in the hospital for a non-related illness. And, like your doctor said, he DID have a defect, but it was tiny and insignificant, and we have never seen a cardiologist since then. And, I have never been unessesarily worried, either. Still, a defect that is significant does not always give a child problems until later and is important to know about and follow.

Anyway, I think, as others have said, it is important to know what is going on with your child's heart given the rate of defects in our kids. I would just tell the doctor that you are willing to not worry about any kind of defect that is insignificant, but not knowing the condition of her heart is more worrisome to you, and yes, you would like to have that heart scan... please.

Congratulations on the birth of your daughter, btw!

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Kim. Wife to Ray, Mommy to Charlie (DS) 1/2006 & Calvin 3/2008
http://charlies47.blogspot.com/

There is more than one way to have a good life!

I am a Yes! We had a prenatal diagnosis and they did one prenatally, even though they were sure there was nothing, found 2 small VSD's that weren't anything to worry about. Then when she was born 5 weeks later they did it again, just to be safe. Then again when she was 8 months and once a year until they close, we are just about to go for another one in May.
I agree how some people may worry, but to me it was reassuring that I know, that way I know everything if I ever need to figure something out, I can rule stuff out automatically.

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Kasey, mom to Paige (2!)

YES!!! ABSOLUTELY insist on getting an echo!!!!!!

My son Oliver had very slightly low oxygen levels at birth (95). They did an echo when he was a newborn. Those first few months were such a crazy roller coaster regarding his heart! The first 3 months, it went like this. "He may have a heart defect, he has a PDA, the PDA is closing, the PDA closed, oh wow his PDA is still there and it's causing problems, the PDA closed, oh look he actually has an ASD, oh wow it's a PDA and an ASD, he has an ASD and a now closed PDA and he'll need to have the ASD surgically closed when he's 2." (Not exaggerating!)

THEN, at 2 we were told the ASD had closed. At 3, they "confirmed" the hole had closed. He was released from cardiology.

Important note: Until 3 weeks ago, his last echo was at 3 months old.

THEN, a few weeks ago I was reading a several page medical report on my son. The report covered all aspects of health and development. There was one sentence about a heart murmur.

Now, from 2 years old until 5 1/2, NO DOCTOR EVER SAW OR HEARD ANY PROBLEMS WITH HIS HEART!!!

After reading about his heart murmur, I immediately called the pediatrician and mentioned that. She immediately called a pediatric cardiologist. We had an appointment the very next day. And....

And we found out he still has both an ASD and PDA!! He DOES need surgery and he needs it soon.

So, YES, absolutely insist on an echo...right away!!!

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--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

I have to whole-heartedly agree with all the previous posts and YES have the scan. My little guy had no detectible murmer or oxygen level problems but they ran one "just in case" sure enough he has two small defects. It gave him no problems until he was about 5 months old but if we didn't know about it from the beginning we wouldn't have realized that was the reason for his symptoms right away. Best possible news is they find nothing, and I always think better be safe then sorry.

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-Heidi wife of Kevin and Mom to Nikolai-10, MaryKate-8, Sara-2, and Kyle (T21)-9/27/09

thaidyed wrote:

My question is--should I insist on a heart scan regardless? I quite like this doctor (UK trained) and want to trust his judgment but when the NDSS's new parent pack says: "Doctors routinely screen for these conditions because some, such as a heart defect, may be present even if no symptoms are readily apparent", I have to wonder!

YES!!! insist on whatever you want for the well being of your child. i'm sorry, but i think the dr. gave you a cop-out for not running any tests and if you could, i would seek a new ped for your little one. my son has a defect (which now may need to be fixed) and by his appearances at birth, he looked just fine. why would you diagnose an internal issue by only looking on the outside??? seems lazy to me. get the scan!

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wife to martin II

mom to marty III (8/6/09, T21)

"I praise you because I am fearfully and wonderfully made." (Psalm 139:14)

Yes of course, insist on a scan for sure. That was the first thing they did when Adam was born, even though he was perfectectly well and showed no signs of distress. He did have a heart defect which was repaired at 4 months.

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Wow-15 responses in less than a day! Thanks everyone for chiming in.

We're just back from the pediatrician (weight check--she's now over her birth weight via breastfeeding only--yipeee!) and he set us up with a consult for the pediatric developmental specialist tomorrow to talk about future care.

Rest assured--I'll be getting an appointment for that heart scan set up immeadiately!

Thanks again everyone-I'll post an update on the verdict.

Kelley

I would def insist on it. My son was thought to be fine as well. The hospital did not check his heart because there was no murmur. A few weeks later we went to the cardiologist because I had read about it and sure enough, Cameron had a complete AV.

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Alek (10), Cameron (3) DS, Rylee (born 7/18/09)

Thought you all deserved an update--your responses were so great to have!

In the end we decided to get a scan at 3 months with the thinking that that would give her a chance to grow a bit and make any problem more visible while also being early enough that any possible treatment wouldn't have been delayed.

We scanned last week and everything looks OK! The Dr said there's a little fluid that should get checked again in about 6 months but he felt it was a non-issue. He said she does have the small hole (PFO?) that is common to babies and closes on its own.

Thanks again!

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