anyone have congenital heart diagnosis? - Mothering Forums

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#1 of 12 Old 06-08-2008, 07:59 PM - Thread Starter
 
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Hello, we are looking at the possibility of our baby having only one ventricle, anyone have any experience or know any moms who have dealt with this?
Thank you, I am 16 weeks right now.
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#2 of 12 Old 06-08-2008, 09:46 PM
 
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No, I have no experience with this. I'm a respiratory therapist in training, but we haven't had the pediatric course yet, so no help there.

You have my prayers and best wishes for your darling baby!

"Listen, are you breathing just a little and calling it a life?"~Mary Oliver

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#3 of 12 Old 06-08-2008, 10:04 PM
 
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After I responded, I got to thinking about which diagnosis this would be. The only thing I could think of is hypoplastic left heart.

If you are ready for info you can google "hypoplastic left heart" and Mayo has a good article about the surgical repairs and such.

Are you having more ultrasounds so they can find out for sure?

"Listen, are you breathing just a little and calling it a life?"~Mary Oliver

RT knitting mama  to 3 (& 8 who didn't make it) wife working on 13 years to a silly man who drives me crazy.
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#4 of 12 Old 06-08-2008, 10:05 PM
 
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I just want to offer a hug and support. We're here when you need us. You may want to post in health and healing, too.
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#5 of 12 Old 06-08-2008, 10:53 PM
 
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I have a friend who's baby was born 3 months ago with something like 13 CHD's. She has had two surgeries, but she is doing alright. Here is a link to her myspace. There seems to be a big support group on there.

http://profile.myspace.com/index.cfm...e-33f80f7b4569

Wife since 2004. Mommy to DS (2005) and DD (2008) and my hopefully VBA2C baby DD due Feb 2012!

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#6 of 12 Old 06-09-2008, 12:20 AM
 
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I do not know anyone dealing with this specifically. I actually have CHD and other issues that have developed since. I have had neonatal echocardiograms done on each of my babies somewhere between 20-24wks just to rule out anything with them.

I had it done at Texas Children's Hospital here. They preform an u/s, but specifically focus on the heart to check structure and blood flow. The drs were incredible at explaining how the heart functions in-utero and after. They also gave me the most comprehensive explanation I have ever received about my own issues.

You are in Boston, so I assume you will be sent to the children's hospital there for further testing. They like to wait until between 20-24wks so they have a better view of the baby's heart before the baby is too big and blocks a clear view of things. I will keep you in my thoughts that everything is alright or, at the very least, easily repairable. I know you will keep us updated.

Mama to Ava (12/03) , Leila (4/06) , Violet (11/08) , and bonus mama to Madison (7/98)
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#7 of 12 Old 06-09-2008, 12:22 AM
 
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My DD had an AVSD, diagnosed at our 20 wk U/S. She had both ventricles, it would have seemed like only one atrium, it was a severe atrial septal defect. I just remember it being the scariest time in my life waiting for that official diagnoses, just try to remember that there is almost nothing they can't fix or vastly improve upon this day in age. My dd didn't need surgery until 15 mnths, when she had her open heart and it is hopefully the only one she'll need.
So by one ventricle you could mean the hypoplastic like pp said or a severe ventricular septal defect or something else. Don't go reading on too much about hypoplastic left heart until you have an official diagnoses, I mean there is a lot they can do for it, but don't go googling too much right now, it sounds like your not sure what it is yet. I did some googling even after we got the diagnoses and scared the crap out of myself about AVSD's. Just stick to what the doctor is telling you and I'm sure the next move will be to see a specialist for a prenatal fetal echocardiogram, and they will be able to tell you a lot more. And don't forget that a lot of congenital heart defects can improve in the womb as the heart developes, and at 16wks there is a lot of developing left to do. PM me any time.

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#8 of 12 Old 06-10-2008, 07:42 PM
 
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Hi,
Just wanted to write in and give you a big hug and hopefully some good vibes. I work as a pediatric critical care nurse. We see heart repairs all the time. Are they a big deal? yes. But, they usually turn out ok. Actually, I have yet to see one that hasn't. Find a surgeon that you trust and is a good communicator. It will seem very scary right after but little by little things will get better. Kids are so resilient - that's why I love working with them!

Take care and enjoy your pregnancy.

Momma to Sofia Hope 11/08 & Anna Grace 9/10
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#9 of 12 Old 06-11-2008, 07:06 PM
 
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#10 of 12 Old 10-11-2008, 01:29 PM
 
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Hi there,
My daughter was diagnosed with an AV Canal at birth and went through her open-heart surgery to repair her defect at 3 months of age. She is doing great now, but I totally understand any and all of the worries and stress you must be carrying. My husband and I feel we were put through this experience because we are meant to help others going through open-heart surgeries with this little babes. I recently started a website for congenital heart defect support. If you leave a comment there with your contact info, I would be more than happy to give you a call and just chat. We found meeting with those who had been through this before was very helpful to us. However scary the near future may seem, please remember these kiddos really do quite well after these surgeries.
Cheers,
Lindsay
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#11 of 12 Old 10-11-2008, 01:41 PM
 
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Oops, forgot to leave that website...www.chdsupport.blogspot.com
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#12 of 12 Old 10-11-2008, 01:51 PM
 
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hey honey, i had heart issues with my first. my first question is where are you and im thrilled youre in boston. this is all about getting a great pediatric cardiologist and a great hospital, which you have there. good luck!
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