Hypoplastic Left Heart Syndrome

My son had hypoplastic right heart. We found a great online support group that can also put her in contact with others in her area, it is called saving little hearts. Also I would just google her so s specific co dition that is how we found a group called www.hypoplasticrighthearts.org. Good luck and lots of prayers for little Noah.

A. -

My daughter was born with multiple heart defects (VSD, vascular ring and slight problem with the mitral valve). Dr. Tam performed both of her heart surgeries with great results and no complications. (She's now 5 and has a never-ending supply of energy!) Any surgery on your child is frightning - and heart surgery certainly was for us. However, the doctors and nurses at Cook took excellent care of our daughter and were so willing to answer questions. During the surgery itself, they called the waiting room at regular intervals to update us. She might ask the cardiologist's office if there are other parents with previous experience that would be willing to answer some questions.

We will be praying that all goes well for Noah and his family!!

A.,

My daughter was born with Transposition of the Great Arteries, multiple VSDs and Pulmonary Stenosis so we have had a little experience with heart surgeries and procedures. However, we went to Children's in Dallas so I can only speak of our experience there. My daughter had surgery at 1 day old, 6 months old and then Open Heart surgery at 8 years old. She also had a couple of heart caths in between. She is now 17 and doing well but her heart is definitely not like a normal persons. I would be willing to talk to your friend if she just wants to connect with someone who has been through something similar. I know how much I appreciated being able to talk to other parents.

I also have a friend whose daughter has different major heart defects that may be more like your friend's son and I'm sure she would be open to talking about her experiences also. They had most of their daughter's procedures done in the Boston area and so probably cannot help with info on the doctors at Cooks since they now go to Children's in Dallas.

Children's Dallas also had a group called Heart to Heart that is a good support group for families. Maybe Cooks has something like this also. Please contact me if your friend would like to talk and pass on our prayers for her family.

Your friend should look into hooking up with the American Heart Assocition. Their national offices are in Dallas and they have a local office in FW off I-30 by papasitos. Not too far from Cook Childrens. They could help connect her to other parents who have experienced this or other cardio-pulm. issues and provide information from their research, etc that could help during the process.
Will be thinking of you all during this time!

Speaking from my own experience with liver, I would have your friend consult with doctors at Children's Medical Center of Dallas as well. My 8 year old son's liver failed and Cook's knew they were not the right place for him but admitted him anyway to give it the old "college try", thinking they would transfer him to Dallas if things got worse. Well, they did and by the time they gave up and transferred him to Dallas, it was too late. He is now in Heaven.

Maybe Cook's expertise with heart issues is better; I don't know. I do know it is up to the parents to do their research and find out who has the best specialists around for their particular issue. I naively thought all hospitals were the same...they are NOT. They all have their areas of expertise. Maybe you could do some of this research for them since I'm sure they are overwhelmed.

I will keep Baby Noah in my prayers.

M.