Hypoplastic Left Heart Syndrome

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Hypoplastic Left Heart Syndrome

Postby manynums » Wed Jan 30, 2008 8:48 pm

Our baby may have Hypoplastic Left Heart Syndrome. Does anyone have any experience with this?

Thanks...
Breastfeeding, babywearing, cloth diapering WOHM. Married to my HS sweetheart & best friend. Proud mama to my two chicklets.

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Postby mamalynn » Wed Jan 30, 2008 9:10 pm

i am sorry, i don't have experience with this, my son was prenatally diagnosed with av canal defect. i would like to give you some links to support groups who are wonderful about answering your questions. i joined a few when i found out and it was the best thing i could ever do. here is a good start.

http://groups.yahoo.com/search?query=hy ... t+syndrome

these are message boards and usually your question is answered almost immediately. best wishes for you and i am here if you need to talk.
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Postby _kelly_s_ » Thu Jan 31, 2008 7:44 pm

Hi there. I'm sorry to hear about your baby having a heart defect. One of my twins had Tetrology of Fallot and Pulumonary Atresia. We also got that diagnosis at 24 weeks during an u/s. She was born way too early at 29 weeks. I fully believe had she been carried to term she would have survived. She had open heart surgery at Lucile Packard Children's Hospital at Stanford at 2 weeks old. She did really well with the surgery but developed an infection.

My advice to you is to do your homework on heart centers. I went to Children's Hospital LA and thought we'd have surgery there. It didn't work out since I delivered early and they had no beds in the Cardiac ICU. Going to Stanford was the best thing that could have happened to us. We found the best surgeon for preemies and he did an awesome job. It was interesting that at CHLA they were only going to do a shunt yet at Stanford they did the full repair even though she was tiny. Do your homework and seek out the best possible surgeon for the heart problem your baby has. Even if it's far from home, you'll be better off. Good luck and I hope everything turns out well.

PM if you have questions or need to talk.
Kelly (32) DH (33) IVF miracles- twin girls! Born 10-16-07 @ 29 weeks Brooklyn Marie- became an angel Nov. 30th Aubrey Lynn- came home after 85 days in NICU on 1-08-08<br />Pregnant again! EDD Nov. 16th
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Postby mamalynn » Thu Jan 31, 2008 8:05 pm

yes, great advice! there are often ronald mcdonald houses near these hospitals. we were lucky enough to live close and have the best surgeon take care of our son.
michelle 41, dh 44,
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Postby rtgirl77 » Fri Feb 01, 2008 1:56 pm

I don't have an HLHS baby myself but I work in a pediatric ICU where we have a peds cardiovascular program. We do some HLHS babies. My best advice to you is to find a large program with a good success rate and lots of experience. I'm not sure about your location but there are lots of large programs. A couple are Childrens Hospital of Philadelphia and Children's Healthcare of Atlanta at Egleston. There are a few here in FL as well. Seek out as much info as you can and make sure you give birth in a place where you will have immediate access to the best teams. We have had some HLHS babies do quite well.

Take care
Jennifer (32) DH (43) DD (10) DS (9) DD (1) and our latest edition born 7/16/09
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Postby manynums » Sun Feb 03, 2008 8:42 am

Thanks for all the advice. Happily, the Level II ultrasound showed no heart defect.
Breastfeeding, babywearing, cloth diapering WOHM. Married to my HS sweetheart & best friend. Proud mama to my two chicklets.

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Postby mamalynn » Sun Feb 03, 2008 11:46 am

that is great news! :jump: :jump: :jump:
michelle 41, dh 44,
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Postby bonita23 » Tue Feb 05, 2008 11:40 am

Glad to hear that, it's great news! My friends daughter has it and it has been a long road, but she is a thriving little girl, even though she has been through alot medically. My friend started a charity supporting the cause. Again, os happy to hear the good news!
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Postby mrsjoh » Thu Jun 05, 2008 7:37 am

we just got this possible diagnosis, wished i scrolled down before i typed in my question.. thanks!
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