my son has a heart condition any moms out there with the same

Kimberly - posted on 11/04/2008 ( 26 moms have responded )

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he has HLHS just wondering i dont know if he is where he should be?? it would be nice to talk to someone whit a kid that undersands what i go though

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[deleted account]

My Daughter Anita has Hypoplastic Right Heart syndrome and has had the three corrective surgery and and one the last she had to have a pacemaker put in and in 2006

defibrillatorwith a pacemakeput in 2008 She is on four different meds for her heart and She will be 8 yrsold on Dec 8 and is doing pretty well

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Vikki - posted on 01/10/2012

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My son max has pulmonary stenosis and regurgitation , he had ballon op didn't work then had7 hour open heart surgery he will have to have more ops x I know what you must be going through

Michaelann - posted on 09/23/2009

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My son was born with Atrioventricular Septal Defect and Pulmonary Valve Stenosis. His heart repair was done when he was 8 months old. He has several other birth defects (cleft lip/palate, colobomas, dandy walker) so far his heart repair has been the "easiest thing" for him....his heart function is great, we just have to monitor his pulmonary valve. It may need redone before he's a teenager.
On another heart note, my dad had a heart transplant 12 years ago - so I have spent a lot of my life with cardiologists, etc. so it wasnt new to me. Seeing it in babies and children was though, and I just cannot get over what strong little buggers these CHD kiddos are!!

Charlene - posted on 09/22/2009

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My one year old son has pulmonary cyanosis. It effects the way his heart and lung pump oxigen to his body. He turns blue a lot and the hospital visits can be long. A fever or a cough is nerve racking sometimes. Plus he can't tell me when things are wrong. I have 4 other kids past my little one. We just moved in the last few months to be closer to his hospital.

Glynis - posted on 09/21/2009

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am pleased she is doing well its a worrying time for us all when our children r pooly my son had his pacemaker fitted at 3 half and he is know 7yrs old he had two holes in his heart one closed by its self and the other had to have a kite in to close he it he also has long q t syndrom the docters r rely wonderfull for what they do for our children when i was in freemans hosp i saw so many little ones needing the help of the docters and they r all brave children before and after they had surgary my friends little boy has half a heart and he was dyanosed at been born he is know 3to 4 he grown up so fast

Angie - posted on 08/22/2009

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My little girl Maci was born on june 20th 2008 with D- TGA/ASD/VSD and hemangioma's in her throat. She had the switch done at 6 days old. She is off all meds her left valve leaks and has just started with a very small amount of pulmonary stenosis. She's doing very well.

Glynis - posted on 02/18/2009

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hi my son was 2half when he had his first heart surgery they mended his hole with a kite and after the operation they found out he had long q t syndrome he can go into carrdic arrest through shock ,excitment ,pain and exercise they say his heart is ok know then they found he had a slow heart beat so was fitted with a pacemaker at 3 half but his long q t syndrome  can be treated with beta blokers but can still drop down dead at any time as they cant say weather mediction works so he can only do a little bit of walking for 5 to 10 mins on good day then turns blue under eyes and around mouth has same simptons as for his heart  as they say he can never have a heart transplant as its genitc and does make any diffrence so we r taking every day as a blessing all children with heart problems all seam little fighters its great what the docs can do know

Jenn - posted on 02/13/2009

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Hi, my daughter has a Hypoplastic left ventricle, transposition of the great arteries, pulmonary artery atresia, major aortal-pulmonary collateral arteries (MAPCA's), PAPVR, and mitral valve atresia.  She's had two surgeries to unifocalize her MAPCA's and has had her atrial septum removed to help with her pulmonary venous flow.  We have her surgeries done at Lucile Packard Children's Hospital at Stanford.  It is a lot of traveling and time away from home, and Kate has developmental delays, but she is tough and doing well.  We hope for the Glenn and Fontan procedures to complete her repair eventually.  If she can't, she will need a heart-lung transplant. 

[deleted account]

My dauther is 5 years old and has HLHS (hypoplastic left heart syndrom) she had the first two operations at Denver Childrens Hospital and the Fontan at Seattle Childrens Hospital.  Sarah has a g-tube and has had a stroke and has a sezure disorder. She is doing well and is in a developmental preschool. She will be needing a transplant in 10 years becouse her right ventrical is failing. Over all she has a good quality life. I would love to help you answer any questions or just to talk.

Crystal - posted on 01/15/2009

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I was born with a heart condition called Total Anomalous Pulmonary Venous Connection (TAPVC). I had heart surgery when I was one years old and have always been small for my age because of it, but no other surgeries and for this I am so very thankful!! I have been blessed.

Andrea ( DREA ) - posted on 11/15/2008

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My son was born in Sept of 2006. His diagnosis is DORV, VSD,ASD,COA,THLAA, HLV, Single ventricle

It was very hard the first year, but it gets easier. Although waiting for the third surgery ( fontan ) is very hard.

I have a web page for him, please feel free to check it out.

http://blogswithheart.com/lionheart/

Chris - posted on 11/13/2008

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My youngest son was diagnosed after he was born 12/21/07 with HLHS. He had the Hybrid-Norwood when he was 10 days old and the Norwood/Glenn when he was five months old. He's been home, healthy and slowly growing since July.



It's been quite a bit to get adjusted to, and I'm amazed at how little is out there for the public in regards to any CHDs!

Mindy - posted on 11/12/2008

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I think you have visited the right place to talk with someone that would understand what you go through. My son Austin will be 10 in December. My son was born with ASD, VSD, Sub Aortic Stenosis, bicuspid aortic valve. His third open heart was April 2007 at Childrens Memorial in Chicago. His first open heart was at 6 days old, 2nd at 3 and 3rd at 8. Has your son had any surgeries? How old is he now?

Julia - posted on 11/11/2008

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Hi everyone - my son was born with TGA - transposition of the great arteries, and I just wanted to let all of you know about a CHD community that was formed recently and is growing very quickly - Moms of Kids with Heart Defects - We would love it if any of you wanted to join the community and share your experiences and knowledge with the other moms there. I look forward to getting to know all of you better!

Nicole - posted on 11/05/2008

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Although I am not familiar with HLHS, my daughter was born with a heart condition, Tetroloagy of Fallot. She had emergency open heart surgery at 4 months because she began to have tet spells. The surgery was a success but they weren't able to fully repair her pulmonary valve. She also developed a blood clot immediately after surgery and they had to go back in. She may have to have another surgery, valve replacement, later in childhood. Let me tell you, she is doing great. It was grueling and I still worry about her constantly. You can't tell by looking at her that she ever had problems. I wish you the best and hang in there.

Karen - posted on 11/05/2008

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Becky - wow, you are the first person that I have met with the same situation. How is your son? How old was he when he had his surgery and was his procedure successful? As these surgeries are fairly "young", I have been told that 20% of the procedures fail, and in our situation we are in among that 20%. What is your daily routine like i.e: nutrition, excercies ect? We are pretty careful and on days think that we are being too careful and other days, not careful enough. We are currently looking at putting the twins into outside activies but am not sure how active he can be.

Becky - posted on 11/05/2008

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I truly understand what you're going through. My son was born with Transposition of the Great Arteries. The arteries going into and leaving his heart were reversed, so he was blue when he was born and had a severe lack of oxygen. Sounds like your son is a strong little boy seeing that he's approaching his 4th birthday. Miracles!!

Deidre - posted on 11/04/2008

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Hi, my son who is five now has tricuspid regurgitation and had a blood clot when he was born. The clot went away and he has not had any surgery. Thanks goodness! The night after I had him he was taken to a children's hopsital 3 hours away. He had the heart defect and a condition called PPHN. His heart and lungs were having to work so hard they had to put him on a heart/lung bypass machine. They told us that was our only option and even then he only had a 20% chance. It was one of the absolute scariest times of my life. He also falls under the special needs category because he was diagnosed with autism this year. I hate the tough road he has had and would not wish it on anyone. Best of luck and if you need anything just let me know. God bless.

J.C. - posted on 11/04/2008

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Hi Kimberly,



My son is 26m/o & has TGA. I'm in a support group for families with kids who have CHDs called Mended Little Hearts. They have chapters all over & have been a great resource so I recommend checking them out if you're interested. Several of our members have kids with HRHS. Hang in there. Let me know if you ever need to talk. :-)



--J.C.

Anne - posted on 11/04/2008

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To Kimberly - I think your cardiologist is being kinda wierd about the situation. I think yuor child SHOULD definately be informed about his condition otherwise, he will not successfully transition from your care to his own when he is older. Also if you discuss his experiences with him, he is less likely to develope severe PTSD or anxiety after his hospital experiences.

Anne - posted on 11/04/2008

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My daughter was born with Double inlet, single left ventricle and pulmonary stenosis. She developed heart block type II pretty quickly. She just turned 10 this year. We joined a support group called Saving Little Hearts. There have been other developmental issues besides the blue color changes.

Karen - posted on 11/04/2008

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Kimberly - your son is a little trooper....the worries that you must have are probably very similar to ours...we walk on egg shells each time that we see his skin color, eating and sleeping habits change. I recently cancelled our home phone and purchased cell phones as I was panicking each time we went for a walk and hike as he tires easily and I am always fearful of the worst....We are teaching him about his heart, the location and feel of it (after he has been running) so if there is ever a problem, then he will recognize it and may be able to let us know...however, our cardiologist has said that this is a bad idea as we may be creating a hyprocondriac (sp?). Do you have any ideas or have done anything similar?

Kimberly - posted on 11/04/2008

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Hypoplastic Left Heart Syndrome he only has the right side of his heart and he will be four in jan

Karen - posted on 11/04/2008

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I also have a little fellow with heart situation. My son was born with transformation of the greater arteries, hole in the heart and a heart murmur. He had heart surgery when only a few days old. Currently, both of his valves are leaking but at our last Cardiologist appointment, the dr. was very pleased with his progress. He and his twin are turning 4 in Feb.



Sorry, I don't know what HLHS means but I can certainly relate to the constant worry that is involved....

Cathy - posted on 11/04/2008

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My son Mitchell 10 years old, yeah, also has heart conditions. He has ventricular arrythmias(may be misspelled) and the left ventricle is squeezing out the right ventricle. But he wasn't supposed to live and here we are 10 years later. They are true miracles

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