My son was born with a congenital heart disease

Jessica - posted on 10/16/2009 ( 20 moms have responded )

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My son was born with Hyplplastic Left Heart Syndrome, does anyone else have a child that was born with a heart disease?

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Cindy - posted on 11/16/2009

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Hi,

Our daughter was born with transposition of the greater arteries. We did not know this till she was born. She also had a hole in her heart. She had surgery at 5 days old to repair the TGA. She is now almost 6 and is doing really well. Her hole closed and also has a heart murmer.

Jessica - posted on 10/27/2009

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Also anyone that wants to know Kaden's full story can visit his page at

www.carepages.com sign in to register(its free) then click on visit a carepage

then type in his name like this----- KadenDanielLovvorn (its 2 v's in the last name not a w) then click on his name and it brings you to his page.

Jessica - posted on 10/27/2009

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I would like to ask everyone that will to keep my son Kaden in your prayers on Thursday - he has an appointment with his Cardiologist for an Echo.It has been a few months since he's been seen so we are hoping for great weight gain, good echo, and a good report from the Dr.

Jessica - posted on 10/27/2009

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Hello everyone-I received alot of responses from people who have little angels with heart complications and would love to hear everyone's story-so if you would like to add me to your circle so we can share stories, pics, and keep up with each other that would be awesome. You can never have enough support for these situations :)

Jessica - posted on 10/27/2009

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aww...she is precious. My son has the HLHS and coarctation of the aorta-he had his 1st surgery at 6 days old then his 2nd at 4 1/2 months and we will probably be bringing him back next summer-hopefully they let us wait that long-for the fontan. he turns 3 on dec. 5th and he is doing great. He also had a feeding tube but had it removed about 1 month after the glen. the only problem we face alot of the time is weight gain. Kaden also went through physical therapy for a little over a year for mostly his gross motor skills and some of his fine motor skills. He is also OCD and has a small sensory disorder as well. Im new to the circle of moms so i havent posted pics yet but will try in the next few days. hope to hear from you again soon.

Jennifer - posted on 10/24/2009

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Yes. My daughter has: Hypoplastic left heart synodrome, coarctation repair, GERD, trachea malaysia. she had heart surgery at 29 days old and she has a trach in her neck and a feeding tube in her belly. I have her pics on my profile....Jenn Beck

Mary - posted on 10/24/2009

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My son Gage is 16 months old and was born with aortic coarctation, VSD and he had a band put on his pulminary artery. He has had 4 heart surgeries and several develpmental delays, but over all he's doing good. These special children are angels on earth

Barb - posted on 10/24/2009

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My son was born with large ventricular septal defect which threw him into heart failure at one day of age. He also has pulmonary stenosis and a bicuspid aortic valve. He had surgical repair at 2 yrs of age. We are currently watching the aortic valve as it has narrowed and is stenotic. He has also developed some mild pulmonary hypertension. He is on 3 blood pressure meds but it does not slow him down! It is important to have a cardiologist that you trust and ours is tops! All of this is a challenge but NOT insurmountable! Be strong!

Karrah - posted on 10/23/2009

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I lost my son when I was 23 weeks pregnant, he had HLHS and an Intact Atrial Spetum. I was diagnosed at 20 weeks and spent the next 3 weeks in and out of Boston hearing different things from every doctor i saw. It was all so overwhelming but Kayden's in a better place and he's in Gods hands now.

Rosemary - posted on 10/23/2009

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Hi Jessica, I have 3 children 2 with heart defects.My daughter 15yrs had an ASD which closed itself pulmonary stenosis and no spleen. My son10yrs had pulmonary atresia and an ASD. He has had 3 surgeries and is in very good health now.

Heike - posted on 10/22/2009

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Our son was born with HLHS with restrictive ASD. We had a long first 7 1/2 months in the hospital. He had the Norwood @ 11 days than he had trouble coming off the ventilator so he was trached with ventilation support until he was 7 months old. He had the Glenn @13 months old and now he is 19 Months old. Hes still on oxygen and takes 1-2 tube feeding a day, but is growing and developing great now!

Heidi - posted on 10/19/2009

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My son has 3 heart murmurs and a BI cuspid aortic valve, only one of the murmurs are large enough to be concerned with and the doctors are worried the aorta will narrow over time because of a enlarged vessel the. He's doing really well

Stephanie - posted on 10/19/2009

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Melanie, that is a a very happy story, my son has had 3 open heart surgeries, 2 caths, and has polyspleenia where he doesn't have a whole spleen but multiple little ones. It is so nice to hear other happy stories.

Stephanie - posted on 10/19/2009

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My son was born with HLHS in march of 2007. He has had all three stages of open heart surgeries and is doing great.

Irma - posted on 10/17/2009

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My baby girl just under went open heart surgery she had ventricular heart defect, she was not diagnosed w/ the defect before birth, but just a few week after, she is 9 months now and was 5 1/2 when she had surgery, it is hard and nerve recking but thks 2 GOD she is very healthy....

Melanie - posted on 10/17/2009

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My son, Kian, was born with Atrial Septal Defect, Double Outlet Right Ventricle with pulmonary Atresia and Total Anomalous Pulmonary Venous Drainage.. [Bit Of A Mouth Fall]. He was also born without a spleen, [the bodys natural immune system]. He underwent surgery went he was 2 days old, then again when he was 2 and a bit, then last August he underwent the second phase of the Fontan Procedure with resulted in him spending just over a week on an Ecmo Machine. He was very poorly when i had him, so much it was touch and go as to wether he would make it, but kian being kian doesn't give up and next week he celebrates his 6th birthday... He has to take medication for the rest of his life [Penicillin for his asplenia and Warfarin with regular finger prick blood tests] but this is a small price to pay... Me and Kian would like to wish everyone on this forum the best of luck for the present and the future x

Cheryl - posted on 10/17/2009

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hi my daughter has truncus arteriosus she is only 17 weeks no had her surgery at 4 weeks, here to talk x

Tracy - posted on 10/17/2009

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Jessica, Our son Patrick was born with Tricuspid Atrisia (with this you have a hypoplastic right ventrical), Transposition of the great vessels and a Coarc of his Aorta. He received his first surgery at 6 weeks his second at six months. It is very difficult road for you and child but you need to stay strong, take care of yourself and enlist as much support as you can. you should post details about your child here and on other communities to get more responses.

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