Anyone have heart babies?

Bridget - posted on 07/29/2009 ( 16 moms have responded )

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Hey everyone,



Just seeing if anyone has heart kids as my little girl has heart disease. She was born with her heart on the opposite side of her chest and her ventricles flip flopped among other things going on in her heart. She has had 2 open heart surgeries with another to come when she is 2 or 3. Also has had a tummy surgery.

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Andrea - posted on 07/31/2009

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my daughter Emily was born with a bicusped aortic valve. She also has langer giedion syndrome, has had 3 eye surgeries, casts on both legs and numerous other ailments. She once was a tiny sickly little girl and is no w a pleasantly plump 11 year old.

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Bonita - posted on 08/14/2009

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WOW, Amazing! Good for you Debbie. I would never give up either. GOD Bless you and your son. I am so happy he is doing so good. He like my son is God's lil worriers. Thank you for sareing you storie with me. I love this site, Im new here and its awesome to see and hear we are not alone. Keep in touch and may God put a head of protection over you and your son.

Debbie - posted on 08/13/2009

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Hi My name is Debbie and I have a 7 year old that has AV canal defect but wasn't found until he was 6 weeks old. He has had 5 open heart surgeries.
The first two surgeries were repairs (2 and 3 months old) 3rd was done when he was 6 months and that was his first mitral valve replacement (mechanical) and he had a pacemaker placed. 4th surgery was when he was 2 1/2 and they replaced his mital valve again but with a pigs valve and had to replace pacemaker because thresholds were to high. He had a pigs valve placed at this point. He also began having severe pulmonary Hypertension and his left lung is only function 15% of the time. He had to have a pulmonary vein stent placed when he was 4. We were told in May 2008 that Jacob was not going to make it and nothing could be done and take him home and make him comfortable. I was not going to do this and give up on him so I had him transferred to Pittsburgh for a heart/lung evaluation and the surgeon there said he was a candidate but he thought he could go in and replace his mitral valve again and repair his pulmonary vein this was done in June of last year and he is still here and doing pretty good for all the problems he has. All I can say is God led me to the surgeon that saved his life. They said when they went in to remove his pigs valve it was so calcified and they did not understand why the other surgeon put it in.

Bonita - posted on 08/11/2009

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Hello my name is Bonnie and I have a son name Andrew that was born with Down Syndrome and Duodenal Atresia (GI repaired at 9 days old) 2 Heart defects TOF & AV Canal defects. His first heart surgery was about 15 days old BT Shunt and his 2nd at 6 months old, full heart repair. He is now 17 months and when he is in his teens or so he may need a new pulmonary valve. All this was very scarry for us but with lots of prayers and faith God will see you through all that is to come. For more resource check out or Google Mended little hearts, and American Heart Heros. I wish you luck with your beautiful lil girl. God Bless

Bridget - posted on 08/11/2009

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Hey Susan,

Actually her first surgery was a vein repair, then the Glenn and now she is set up in a way that she should be able to be a 2 ventricle repair(age 2 or 3) is the next surgery for that. Our surgeon set her up in a way that he can do the 2 instead of the fontan. glad our guy is doing good! Question for you though..how long did it take him to crawl, walk....??

Susan - posted on 08/11/2009

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Hi, My son was born with half a heart, otherwise known as Hypoplastic Left Heart Syndrome. He's had three open-heart surgeries. I'm guessing your little one had the Norwood and the Glenn and is waiting for the Fontan. Those are the usual three surgeries. He's now four and doing well. Feeding tube is gone and he's only needing some speech therapy. As for everything else, he's like a normal 4 year old. Thanks be to God.

[deleted account]

Hello Bridget,

Yes, I have 4 children, my youngest son has PVS (Pulmonary Valve Stenosis) and HCM (Hypertrophic Cardiomyopathy) and TOF. He underwent open 2 open heart surgeries at about a year and a half of age to fix the TOF, an RVOTO dissection (right ventricular outflow tract obstruction) and had his pulmonary valve removed. His HCM is being monitored, and he will need surgery in the future to have another pulmonary valve put back in. Lachlan suffers from a genetic disorder called Noonan Syndrome

Bridget - posted on 08/04/2009

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Thanks everyone! Here is a list of what my little girl Lorin has.

1. Dextrocardia

2. L transposition(ventricles flip flopped)

3. Complete and slightly unbalanced ASD

4. Total anomalous pulmonary venous connection below the diaphram(surgery on this when she was 2 weeks old)

5. Pulmonary stenosis, valvar and supravalvar

6. Common AV valve insufficiency

7. Asplenia(no spleen, take amoxicillin for it)

8. Hiatel hernia(fixed June of 2009)



She also had a stroke after her first heart surgery. She has had the vein repair, then the 3nd OHS was in March and she should now be set up to be a complete 2 ventricle repair at the next surgery. Her oxygen level is in the 70's to 80's as she is working as a 1 ventricle right now. Please email me if you have kiddos with heart stuff so we can be a support to each other and share stories. Lorin has a caringbridge website too. it is

www.caringbridge.org/visit/lorinprahm

[deleted account]

Hi my son was born with pulmonary valve stenosis, he had first surgery at 13 months. with 6 monthly checks etc, he has learning disabilities and noonan syndrome. But regardless of his medical problems, he is now a strong 17 year old has no limiations, but still has regular check-ups.Hold in there it does get better...

Tina - posted on 08/02/2009

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My daughter, Sarah, was born with Tetraology of Fallot. She also has pulmonary atresia and DiGeorge syndrome which caused her heart defect. Her first open heart surgery was when she was 18 days old and the second when she was 11 months. She still needs another one next year. She also had tummy surgery and is tube fed, although she is just beginning to learn how to eat orally. It is a very scary thing to go through. It's unfortunate that we have to watch our children go through this but it is nice to know there are others out there going through similar situations and you are not alone.

Jamie - posted on 08/01/2009

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my daughter was born with a hole in her heart called a PDA birth defect that had to be surgically repaired twice at the children's hospital / repaired twice / severe allergies and asthma / also learning disability

Keri - posted on 08/01/2009

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My son Logan who has Down Syndrome was born with a cleft valve and holes in his heart. Had open heart surgery at Hershey and still today has a little heart murmur(if this is how you spell it) and still needs to take blood pressure medicine daily and get echos done once a year.

Amy - posted on 08/01/2009

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Lots of Love God Bless you. Sending prayer your way. I would appreciate all the prayers you could send as well. My son's name is Ethan Tyler Carter. Thank you

Amy - posted on 08/01/2009

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I have a son who is 6 now born with Tetralogy of Fallot. It is 4 heart defects. Part of it was fixed at birth. He was born with only part of a pulmonary valve and that valve has to work extra hard because of severe leakage between the ventricles. In return the right side of his heart is enlarged and not fuctioning well. So now he has to have a valve replacement which will have to be done periodically throughout his life there is no permanant fix for it. We live in WV and on September 14th he will have his surgery at Cincinnati Childrens Hospital where his first open heart was done at 5 days old. This is so hard. I so badly want to take his place, but god knows I can't. I feel for you and in a lot of ways understand what you have been through even though the defects are different. As a mother to another mother I understand. I would like to talk sometime. I also need all of the support I can get. Talk to ya soon Amy

Mary - posted on 07/31/2009

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Yes dear there are many many of us heart moms online! My daughter has HLHS- hypoplastic left heart syndrome. In other words, she was born with only the right side of her heart. My Alli has had 11 surgeries. 3 of them OHS 1st @ 6 days old, 2nd @ 9months old, 3rd @ 18 months old. 7 heart caths and a feeding tube surgery. You have a darling little girl!

Lori - posted on 07/30/2009

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Hey Bridget,

I have a 4 and a half year old boy who was born with a heart defect. He has Shones Complex among other things. What tummy surgery did your little girl have? If you don't mind my asking.

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