Heart babies

For mommies of heart babies


Late diagnosis of TOF

My baby girl just had her first open heart surgery for TOF after ending up in the emergency room after just getting a date for her surgery. Her TOF wasn’t even picked up until...

Started by Candice on 11/17/2017 in Heart Babies

Last update on 11/17/2017 by Candice


HLHS '' My story''

Hello, this is my journey with my daughter with HLHS, i was looking for a blog , somewhere , where i could share my experience and what it did for me and maybe help someone in...

Started by Melanie_lanteigne on 10/03/2017 in Heart Babies

Last update on 10/03/2017 by Melanie_lanteigne


HLHS and Liver damage

My son has HLHS. He is 23 years old, He had the Norwood at 8 days, Glenn at 7 months and Fontan at 3. We just found out he has Cirrhosis of the liver. His GI DR said its...

Started by MIndy on 09/01/2017 in Heart Babies

Last update on 09/01/2017 by MIndy


Bicuspid Aortic Valve

I'm wondering if anyone on here has a child who's been through the valve replacement surgery already? My son was diagnosed with bicuspid aortic valve at 3 months old. At the...

Started by Alisa on 08/21/2010 in Heart Babies

Last update on 02/05/2016 by Traci


Coarctation of the Aorta

I'm due in April and my daughter has CoA . They're planning immediate surgery. Im curious if anyone recommends certain clothing or gear to make things more comfortable or...

Started by Meghan on 12/09/2015 in Heart Babies

Last update on 12/09/2015 by Meghan


A child with WPW anyone??

My son has WPW. It was discovered in utero but not diagnosed until the day he was born. We've had a wild ride with episodes of SVT and trips to the ER to convert his heart to...

Started by Christy on 01/14/2009 in Heart Babies

Last update on 03/01/2015 by Lynn Marie


Truncus Arteriosis and Cardiac Arrest

Hi everyone - in short, my daughter was born July 12, 2014 with Truncus Arteriosis and Di George Syndrome. We did not know prenatally. She underwent OHS on July 16th at Levine...

Started by Kristina on 11/17/2014 in Heart Babies

Last update on 11/17/2014 by Kristina


Guilty and angry mom of tof baby

My daughter was born 4 weeks ago with undiagnosed tof. As irrational as my husband tells me i am being I can not help feeling like I did something wrong. Yes doctors have told...

Started by Nicole on 06/04/2013 in Heart Babies

Last update on 11/17/2014 by Kristina


Double Aortic Arch

Does anyone else here have a child with this. My 18 month old son was just diagnosed last month. He is scheduled for surgery March 7th.

Started by Renee on 02/04/2012 in Heart Babies

Last update on 06/09/2014 by User


my handsome man anthony

hello everyone . on January 7 2014 i was induced and gave birth to my son , everything went so perfect the only thing that alarmed me was that his hands and feet were blue i...

Started by Katrina on 05/22/2014 in Heart Babies

Last update on 05/22/2014 by Katrina


New to this....Tetralogy of Fallot anyone?

My name is Geneva, I have a 5 1/2 tr old son who was born with Tetralogy of Fallot and two surgeries later...he is a happy healthy rambunctious boy! Scary to see your baby...

Started by Geneva on 01/29/2009 in Heart Babies

Last update on 04/06/2014 by Lily


ASD and VSD surgery

Hi, I'm new to this so Hello My daughter is 8 months old and was diagnosed with a Ventricular Septal Defect and Pulmonary Stenosis when she was a week old. As the months have...

Started by Julia on 08/31/2013 in Heart Babies

Last update on 11/05/2013 by Jenny


low grade temp and nasal congestion

Our little one turned bluish and became listless when her nose was suctioned for mucus as well as when saline solution was placed in her nose. Any other ideas for not upsetting...

Started by Pam on 08/18/2013 in Heart Babies

Last update on 08/18/2013 by Pam


hypoplastic left heart syndrome

Hi my son dion is 8 yrs old and has hlhs, he is doing really well at min and had his fontan september 08,

Started by Melissa on 05/21/2009 in Heart Babies

Last update on 07/15/2013 by Wendy