I am 21 weeks pregnant and I just found out during a routine ultrasound that my son has single ventricle congenital heart disease and ASD (a hole in the heart). To say the least the news was very upsetting. We are told that he will have to undergo 2-3 surgeries to fix this defect. First is the Glen procedure and then the Fontan Procedure. I have been scowering the internet for support and information and I am having a hard time finding other moms that have babies that have gone through these procedures or will be going through them. I would love to be able to connect with other families that are going through similar troubles. If you or your baby has had a heart defect please share your story.
Greetings! Initially it can be difficult to find others going through this. Are you a member of Facebook? There are wonderful groups and tons of CHD families there. My son, Ronald Harper was undiagnosed during my pregnancy, he was born with a VSD, aortic stenosis and interrupted aortic arch. He had a Norwood at three days old and a modified BT shunt at 6 months old. His next surgery will be the rastelli, which will most likely be right around his 2nd birthday. Please email me such.a.goofball @ gmail.com I would love to talk, I am also on facebook.
hi, my baby was also diagnosed in utero with a chd, although it was a different diagnosis than your baby's. I know it is the scariest news ever to hear when you are pregnant. There are a lot of national organizations that help support families like us, such as mended little hearts. Do you have facebook? I have connected with many other parents who have a baby with chd, it is a good support group. here is a link to my baby's page: http://www.facebook.com/pages/Silver...08299992527656
Aoife had her first open heart surgery at 2 days old. She had her 2nd at 3 months old. you can read her birth story and more on her page, and you can add me as a friend if you would like to chat. I wish you and your baby good luck, know that you are not alone. There are a lot of good people out there who can help support you. you can email me at email@example.com or look me up on facebook
Last edited by julip; 04-29-2010 at 12:55 PM. Reason: added something i forgot
There are many CHD parents out there, and we all strive to support each other in all ways. Not everyone's condition is the same, but we support each other all the same. If you are not on Facebook, then like the ladies above me, I recommend you join... Search CHD in the search box on FB and you will find many links. Email me at dana @ domainsecure.com and I'll be glad to help you find groups on FB to talk to and let you know the ones I am in also. I have 2 CHD children - pulmonary atresia with intact ventricular septum and both of my children (12, almost 13 year old daughter, and 2 1/2 year old son) are wonderful, "healthy" CHD Warriors. Talking to other families IS a very important part of moving forward for you - we do not offer "medical" advice, but I believe we do offer a semblance of sanity : )
Please contact me, and the other mom's above, and DO get on Facebook, that's where I've found the best groups and most timely support and responses!
I am on Facebook and just joined CHD in causes. I am so greatful to have people to talk to about our struggles. feel free to friend me, adreana duchesne from MA. thank you all for your support!!!