Congenital Heart Disease Support Group

Hi, although my son was born with a different heart defect, I get where you're coming from.

My baby boy was born June 2003 with HLHS, basically meaning the left side of his heart was too small. We didn't know until he was 2 days old when he went into heart failure.

He has undergone 6 open heart surgeries, 5 of which were before his first birthday. And the last when he was 2 1/2. All the surgeries were valve replacements of his aortic and mitral valves.

Yes it was a traumatic time for all of us to endure, but one that was necessary to get us where we are today. DJ just turned 6 two weeks ago. He's starting first grade this fall. Looking at him, you'd never suspect he has any heart problems. He runs and plays with his younger siblings. He's very smart and loves video games. Typical kid. No restrictions, other than no sports. Future unknown, but no one ever knows their future.

I wish you the best as you navigate through this. If you ever need to talk or have "mom" questions, I'm here.

Wow this is a scary time for you! My granddaughter has HLHS and I have seen other babies with double ventricular outlets. The surgeries are similar, I know most of the kids at University of Michigan Motts Children's hospital have a Norwood surgery first, then a hemi Fontan at between 4 and 6 months old. I don't know what they are doing in the UK care wise but at least you are close to the best care in the UK.
This is so frighening for you right now, but believe it or not, this is a blessing. So many kids are like Callie's son, nobody knows anything is wrong and them wham-o, the baby is so sick and it is a big emergency. You have a litle time to learn about what will happen.
I wish I could say everything will be OK, but I can't, I would be lying. I can say that I have been a nurse for over 30 years now, I have an OB/Peds background. I have never seen so many miracle kids as I have since Kylie's birth, all CHD kids like Kylie.We have been blessed with an incredible team of doctors. The ones that choose to do this type of surgery are the best of the best, no flunkies. The nurses are extremely well trained, compassionate and competent. I have met so many wonderful people throughout this experience. I will be praying for you and your family and available if you would like to know more, Blessings on all of you, Diane

Hi- Thanks so much for your replies! It's nice to hear the positive stories... I keep hearing too many of the negative ones, and it's really hard to stay optimistic what with the current economic climate/ swine flu, and all the other depressing things going around at the moment!
This seems like one thing too many to cope with- and my other children are picking up on the stressful atmosphere and becoming more hard work than usual too!!
Still dreading his birth and what follows- I'll be bang in the middle of London and there are so many other health scares currently that that suddenly doesn't seem like the best place to be born- but have no choice in the matter- have to go where the specialists are.. seems like my pregnancy timing was a bit out this time!!
Never mind- trying not to panic about things- but pregnancy hormones always seem to make me more anxious and less rational unfortunatley!
Anyway- Thanks again... It's nice to hear from others in the same (sort of) boat! xx

Hang in there, honey. I have found you a way to contact a family that I know with a son who has DOLV, a similar disorder. I left the directions in a message to you on ds. Please let me know if I can be of any help. Love and Blessings to you and your family, Diane

I'm just expressing my compassion for what you are going through now, at least your baby has a fighting chance in this day and age to make it 'all better'.....us older folks didn't have that. I hope you will get something positive out of the point I'm trying to make. My thoughts are with you. Good luck with your upcoming birth!