any moms with a child that has a congential heart defect ????

Cynthia - posted on 12/08/2009 ( 12 moms have responded )

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hi my name is cynthia and my daughter is a month old and while still in the womb the doctor discovered she had a rare and serious heart defect and said she prolly wouldnt make it after birth and then rarely make it after first surgery , well she had her first surgery on 11/16/2009 just a few days after her birth and now we are still int he hospital recovering and getting ready to go home, i would like to speak with other moms who have heart babies , her defect is known as a hypoplastic left heart syndrome .

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Sarah - posted on 02/01/2010

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My daughter was diagnosed with a complex heart defect while in womb. She was projected to go a year without a surgery but had her first at 3 months. It took 9 days from start to finish and made such a difference in her quality of life. She still will have to at least one more, my guess is probably a few more. Although it is hard to see her lying flat with tubes from her chest, I have to say the recovery was much quicker than I thought and the difference I see now that she is partially repaired is amazing. If I stop to think about her heart actually being held in the surgeons hand, her chest being "cracked" open, I can't bear it. Especially knowing we have to do it all over again but I put my faith in God and the Surgeons he has led me to. Cheyenne has recovered well and I fully expect a long happy life with her. Her defect was AV Canal Syndrome, her heart had a hole in the center (massive hole) and her valves were kicking back into the lungs. She still takes 12 medications and has for this whole first year but it is all worth it each time she smiles at me or yanks on my hair and chuckles. Good LUck and keep the faith.

Crystal - posted on 12/11/2009

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Heart defects are actually THE number one birth defect though most people don't know that , and I have been dealing with a very serrious one with my son also since birth. He will be five on Christmas day. We have had MANY surgeries and interventions, so I know how hard and scarey it all is. Your life becomes your child's condition, but believe me......these kids have a very rare beauty and strength and are very much worth the struggle. Many do survive the surgery for HLHS and there are many people out there willing to offer support. You may want to check out "littlehearts" website at littlehearts.org and also the CHD website for information and support groups.

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Jackie - posted on 05/01/2010

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My son has Hypopolastic RIGHT heart Syndrome, ASD, VSD, PDA and Tricuspid Atresia. He had all 3 repairs and is now 14 years old and doing well. Hang in there. It is a tough road ahead, but with lots of support from the hospital and support groups in your area...google it if you don't know of one or ask the hospital social worker for direction. My son had many feeding issues (had a feeding tube) and some develomental delays, but with therapy PT, OT - he did really well and is still doing well. Hang n there and if you need to talk, let me know.

Misty - posted on 02/18/2010

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Hi! My name is Misty and my little guy was also born with a heart defect. He is 6 1/2 years old now, half way thru his first grade year in school and doing great. He had his first OHS at 14 days old and we had a pretty tramatic stay in the hospital, but he was worth every second of it. His defect was Transposition of the Great Arteries - his pulmonary artery and aorta were switched. We were not diagnosed in utero, so it was quite a shock. The best advice I can give you is to demand to know everything that is going on, for you are your child's best advocate. They are little miracles - I thank God for him every day, he is my little man. My little hero.

Julee - posted on 02/15/2010

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oh by the way, see if there is a mended little hearts or saving little hearts chapter in your area. they have surgery care packages, and give support to moms and families who have heart babies. they are a great resource.

Julee - posted on 02/15/2010

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Hi, my daughter Aoife was also diagnosed in utero. They originally thought she had HLHS but after she was born they realized it was the very rare Shone's Complex. She had her first surgery at 2 days old and her 2nd at 3 months. At the moment she is stable and asymptomatic but she will need more surgeries later on. It can be super scary and difficult on you and your family when a baby has to undergo surgery. i wont say that it gets any easier but you do learn to adapt better. We stayed in the ronald mcdonald house for 3 weeks when Aoife underwent her surgery. The people there were inspiring and they taught me how to cope better and how to help others just by being there for them. Feel free to add me to friends and we can chat whenever you need someone to talk to. Good luck to you and your family and keep us posted on the progress. It's easy to feel alone and like no one understands what you are going through, but there are others out there who do get it. take care

Sarah - posted on 02/11/2010

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My son was born July 2006 with Tetralogy of Fallot (TOF), Venticular Septal Defect (VSD), and Pulmonary Stenosis. He has had angioplasty at 1 1/2 days old and open heart repair surgery at 4 1/2 months old and is possibly going to have valve surgery this year. I'm just starting to notice his health declining. He has a great spirit and has been such a good fighter. If you would like to know more about his story it's on: http://www.caringbridge.org/visit/brendo... ~ I hope and pray that your family is doing well. Take Care! P.S I live in Green Bay, WI

Jennifer - posted on 02/08/2010

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Hi Cynthia,
My daughter was born in March 2009 with Tetralogy of Fallot, 4 defects of the heart. She has already gone through one open heart surgery and is doing fantastic! What region/area are you in? Jennifer

Samantha - posted on 02/01/2010

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Hi - my little one was also diagnosed whilst in utero and he had his first surgery at 4days - we have made it through 9 months and he is going back in a weeks time for open heart surgery to re-arrange what they can of his heart. He was diagnosed with HLHS in utero but this was corrected at birth to a variety of other defects and conditions. Jack has struggled to put on weight and is now only 6.5kg - he doesn't like to be on his chest as it makes him hard to breath and he still isnt eating solids but he smiles non-stop and laughs constantly and everyone says how cute he is. Take one day at a time and try and not compare with the others around as our kids have to work a lot harder to do tasks such as breathing and moving. Whilst it isn't always fun in the hospital and doing medication just know that our kids will grow up knowing how precious life is and how very lucky they are............enjoy and god bless

Allyson - posted on 01/31/2010

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hi i'm ally, I myself had my first heart surgery when i was 8 yrs old, and have had another 3 since.. it's very frightening as it's such a big operation but i have to say that the medical world is far more advanced now than since i was 8 and as scary as it is, it is simply amazing how these very experienced doctors can work their magic and repair not only mine but tiny little babies' hearts.

Cynthia - posted on 12/11/2009

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thank thats very helpful , i have been to tchin.org its helpful , ill check thos sights out . there are so many supportive ppl , and you are correct they are lil troopers , i know i would never ever be able to tolerate ehat my baby has gone thru

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