HLHS, where can you find the best informaiton?

Kayla - posted on 04/19/2009

My son was diagnosed 22 weeks inutero...I found all of my help online thru support groups...on myspace actually. I'm new to facebook. Talking to other people was the best thing I ever did...they have the best information I found!!

Lori - posted on 04/17/2009

Hi, my daughter has HLHS. There is 3 surgery's. My daughter had the first one at 2 days old. The second one at about 5 months. The third one at 1 and a half. I did not know my daughter had it til the day we got ready to go home. That was terrible. But she had great Doctors in Memphis.

Jami - posted on 03/22/2009

A pediatric cardiologist is the best informational source and the most reliable. It is a very confusing syndrome. My son is almost 10 and we found out he had HPLH when he was 3 days old. He is done with all surguries and is doing well. It is long and exhausting but well worth it. God can and will do wonderful things, he will be by your side and my prayers are with you and your family.

Andrea - posted on 03/19/2009

Hi Nadia,

I know how you feel. My son is now 5 and has HLHS. I found out when I was 19 weeks that he had a heart defect. Here is a link to a website I found very helpful. http://yourtotalhealth.ivillage.com/hypo...

Let me know if I can help you in any way. I would be happy to answer any questions you have.

Andrea

Rachel - posted on 03/19/2009

My daughter has double inlet left ventricle which is very similar to HLHS. I didn't find out about it until the day I had her. She was 2 months premature but came out looking perfectly healthy. She was immediately sent to the NICU when they discovered the heart murmur and the following echo proved that she had the heart defect. She had her first surgery at 2 days old to put in a BT shunt but while she was in the hospital, she also came down with NEC (necrotizing enterocolitis) and had 2 intestinal operations. Her next heart surgery was at 6 months for a bi-directional Glenn procedure. Six weeks later, she had a pericardial effusion where fluid was filling her chambers and they had to insert tubes to release the pressure on her heart. She's now 2 1/2 years old and a bundle of energy. She's due for the Fontan procedure in roughly 9 months to a year. If you met her, you would hardly believe there was anything wrong with her heart. She runs and plays and destroys everything in reach just like any other normal toddler. She definitely doesn't let her condition hold her back from anything. If you talk to your doctors, they can explain the procedures better and even draw pictures to help you understand. That's what my doctors did for me. Sometimes the internet can only provide so much info and it's better to have someone there who can explain the details.

Donna - posted on 03/11/2009

hi Nadina i woz 21weeks pregnant when i found out that my daughter had hypo-plastic left heart syndrome i no wot ure going through.

my daughter had her first op 2days old her second when she woz 11months and her third when she woz 3yrs old.

shes now 10 there is light at the end of the tunnel there r hurddles and u take day-by-day.

shes on medication but apart from that u wouldnt think that my daughter chloe-louise had a heart problem.

she may need a heart transplant.

mu daughter is under Evalina Childrens Hospital in London one of the best .

Nadina - posted on 02/17/2009

thank you for the website, i have found this a great help. I have made a list of questions to ask the cardiologist at the next appointment.

Thank you for your reply.

Megan - posted on 02/17/2009

HI Nadina, my name is Megan and I'm 30 wks pregant with a son, who was diagnosed at around 17-18 wks with HLHS. The pediatric cardiologist that we see has been very helpful in helping us to understand what our son's heart looks like and has taken us step by step what they will do during the stage I procedure once he is born. We are also meeting with the surgeon next week as well. What hospital will you deliver at? Have they been helpful in helping you prepare?

Thanks Amelia for the link to the Hope for HLHS web site...I'm going to check it out as well.

Thoughts and prayers are with you both.

Amelia - posted on 02/10/2009

Hi Nadina. I was diagnosed with my son at 19w1d, so I know what you're going through. He's almost four now, and I've been on a support group that has much needed info. Here is their web site:

http://www.hopeforhlhs.com/index.html



There is also a yahoo group of the same name. You can ask questions about differences in the styles of procedures, doctors, etc. Since HLHS is a syndrome, there are variances among many children.



I hope this helps, and my prayers are with you.