Any body with kids who will need surgery in the future?

Shannon - posted on 03/17/2009 ( 19 moms have responded )

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MY son has tetralogy of Fallout,an he already had one surgery at 6 months.He has to have another one sometime in the future.I just hate not really knowing the future and that just really makes me sad when i think bout it..But he is doing well as of now.Hes going on 2.

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Karen - posted on 03/23/2009

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My son Lee will be 15 in July. He was first diagnosised with aorta coarctation at 18 months and had surgery at 2 years of age (the doctors went in through his side). He has had 3 caths, 2 of which included stent placements for what they originally thought was a recurring coarctation at the original site, but its actually in his arch. At his 8/08 checkup he got a good report and we were thrilled and expected to get the same news at his appointment last week (Lee was also previously diagnosed with bicuspid aortic valve) but the doctor found a subaortic membrane that hadn't been there before. It seems to be affecting the valve already as its gone from trivial to mild. Lee goes back in 6 months and depending on if the membrane grows and how fast, he may have to have surgery.

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Nora - posted on 11/20/2013

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My son Adrian also has a sub aortic membrane condition, we found out about this when he was 8 he has to see a cardiologist every year, it used to be every 6 months but there is not much growth so they extended the time between visits, it is very scary for our children to have any kind of heart condition. Every time he goes to his cardiologist it scares me that the dr. my tell me it is time for his surgery. I will never stop praying for a miracle that he may not need to have an open heart surgery....

Brittany - posted on 09/08/2012

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I have the same exact thingI got my first heart valve at 6 months as well they told me I would need one by the age of 2 I am now 16 and still have not need one and I recommend second opinion I have been told since I was a baby I need a new valve and I'm am 16 and doing very well

Brittany - posted on 09/08/2012

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I have the same exact thingI got my first heart valve at 6 months as well they told me I would need one by the age of 2 I am now 16 and still have not need one and I recommend second opinion I have been told since I was a baby I need a new valve and I'm am 16 and doing very well

Lisa - posted on 01/30/2010

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My son born in 2006 was having trouble during Labor so I had an emergency C-section. When he came out he was blue .He was revived and found to have Pulmonary Atresia with an Intact Venticular Septum. He had open heart surgery when he was 3 months old to have a RV Patch. Then we went back to the Cardiologist every month, then 3 months. Hoping that he would not need surgery, but 10/09 he had a cath procedure to close his PFO. Hopefully he will not need anymore Surgeries but they say he may need a value in the future, but I hoping he won't. Every time we go I dread waiting to hear it is time for more surgery. My blessings are with you and l know how you feel. Remember what doesn't break us makes us stronger.

Natalia - posted on 01/24/2010

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My daughter has a medium VSD, with extra muscle in her right ventricle and pulmonary stenosis. She will have surgery in the future, we're just waiting on the word right now. It doesn't affect her much, she's 17 months old now.

Kylie - posted on 01/21/2010

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when we were still in the hospital, we were told our son had aortic stenosis. basically his aortic valve is too narrow and doesn't allow blood to flow freely from one ventricle to the other. the peds dr. said it was mild and she didn't expect to see any problems come from it, but after only 3 visits to the cardiologist, and 3 echoes looking slightly worse each time, we were told if there's anymore narrowing by his next appt. in march, conrad will have to have surgery. he will be 8 months old then. i'm going to have to go back to work before then too, and i'm FREAKING OUT at the thought of not being here with him every second of his recovery! mama's been home with him every day since he was born and i feel terrible that when he needs me most, i can't be here as much. i wish i could wait til after to go back to work, but the money's running out and the bill's just keep rolling in.

Maria - posted on 01/01/2010

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My son is 7 years old and was diagnosed with a problem with his aortia. He was diagnosed when he was 6 months old after being 5 weeks early and a very sick little thing when he was born. We have to go to see his cardiologist every 6 months and every 6 months after the tests have been completed and we sit in his consultant room he tells us to come back in 6 months time. We were told when it was first confirmed that David would need surgery but that they would try not to do this until absolutely necessary. David now knows that he will have to have surgery at some point and whenever the appointment comes round we all go and are told that we need to go back in 6 months. A part of me wants to have the plan for the surgery set down and a time line for it to take place the vagueness of the "future" is always too much. Although part of me is relived that he doesn't have to go through open heart surgery yet, i just need a plan and i can't have it. We go back for his 6 months check up in a couple of weeks and already i can feel myself starting to tense up, although i would never show this to David.

Tina - posted on 12/05/2009

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My son is expected to need surgery within the next couple of years...he has an aortic stenosis with a bicuspid valve that regurgitates...the future is a scary place

Tiffany - posted on 07/08/2009

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Hello Shannon, dealing with the not knowing when the next surgery will be is tough. My son was born with a VSD and deformity of the mitravalve. He had surgery at 2 months to do repairs. In Sept of '08, we were told that our child had scar tissue blocking the aorta valve and would need another surgery but did not know when. 6 months later we were told it would be in May. Since the surgery, we were told that there is still some restriction and that they would just have to watch it on top of watching the mitravalve because the reconstruction did not open it all the way. So I spend most of my days wondering when will be the next one. One thing that helped me get through it and still does is that I tell myself, its something that can't be changed no matter how much you would give to change it. That I need to be strong and make sure my son is as happy as can be and lives a great life. He is doing great and you could never tell that he has had the heart surgeries. But the waiting game is something that can't be helped. I will say a prayer for you as I know how difficult it is to not know. And then have it sprung on you. Just remember as long as he is happy you should be happy.

Erica - posted on 07/03/2009

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My son has tetrology of fallot also. He had his first surgery at 3 days old and his second at 2 and a half months old. Most babies can wait for this next surgery he will need until they are 10 but he has grown faster than they imagined and it looks like it will be sometime between age 4 and 6. He will be 2 this month. He is an amazingly strong little boy and he also has kidney reflux grade 5, which will definately need surgery it is just a matter of when. He goes for tests on the 9th of this month, July, and then he will find out the results of those tests on the 14th. We will be saying lots of prayers because without prayer I would never have made it.

Jen - posted on 06/11/2009

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my son Kayden has Right Atrial Isomerism and he is 4 months old with no surgeries done yet....he had a cardiac cath on Tuesday and is scheduled for surgery July 16...we found out he might have 3 surgeries in total...we were origionally told 2 but if he needs 3 he will have them

Jody - posted on 06/11/2009

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I am new to this site also. I have a daughter with Truncusarteriosis. They found out she had it within 24 hours of her being born. She was 3 months old before she finally got to come home. She also had some intestinal issues before she ended up having her first surgery. She is almost 12 now and had her fourth surgery Sept 1st 2008. She is doing great Doc says her heart has never looked our sounded so good. That is always good to hear. She still has to go visit him every 6 months and when the time comes to return to the dr my heart races and i get nervous because you never want to hear those words (It"s Time again). She is a little petite girl. Her sister is 9 yrs old and is out growing her. Her sister has started getting little boobs and she seems jealous. I was wondering because she has had multiple surgeries does it slow down the growth of your boobs?



Last year she got to make a wish from the make a wish foundation. We went to Disney World and had a great time and will never forget about all the people that make so many wishes come true. Many people think that kids with heart defects don't qualify for make a wish but you do. Make a wish foundation is for kids with anything life threating. So if your child has not made a wish yet let them make one they will never forget. To all the mothers out there I know how you feel and my prayers are with each and everyone of you.

Catherine - posted on 03/30/2009

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Hello Shannon, I'm new to this site. My son had the same and I was told the same. He is 4 now just turned, and is doing well. He has not needed anything but I think I know how you feel, I too worry about the future and get nervous when we are due for appointments, But after his 6 month surgery, he's needed nothing. I just hope and pray that he will not, also that if he does that medicine will advance so they will not have to open up my baby again. If you would like to talk more here is my email add. catdickey@hotmail.com Cat is my name.

User - posted on 03/25/2009

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Hey, Shannon. My oldest daughter was born with tetrology of fallot and VSD. When she was 2 weeks old, we were told she would need surgery "sometime in the future." That phrase is pretty scary, isn't it?? Thankfully, she didn't have any symtoms until she was about a year old, and they did the surgery at 14 months. She's now a healthy, happy 10-year-old girl. The hardest part was waiting and not knowing when she would undergo surgery. I understand your sadness and just want you to know that you and your son are in my thoughts and prayers as you are going through this. Not sure if you are a believer, but God certainly heard from me LOTS during our trying times and it paid off! I know it's hard, but try to enjoy each day as it comes. Blessings...

Mélanie - posted on 03/25/2009

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My youngest child, my baby boy, born last december was diagnosed at 3 weeks with 2 VSD and a pulmonic stenosis. He will undergo surgery next month...or before if he desaturates or stop gaining weight. Thankfully he is breastfed and gains weight very well. Nobody could ever say he has a cardiac problem just by looking at him. I guess tahat they will believe it once the scar is apparent...this saddens me!

Veronnica - posted on 03/23/2009

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My youngest daughter has Ebstein's Anomaly. She hasn't undergone surgery, but is likely to when she is older and more active... She's 15 months now.

Rachel - posted on 03/19/2009

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My daughter has double inlet left ventricle. She had her first surgery at 2 days old, her second at 6 months, including a pericardial effusion 6 weeks later. She's due for her final surgery in 9 months to a year from now. She's turned 3 in October. If you met her, you'd never be able to tell she had a heart condition if you didn't see the scars. She's a bundle of energy and gets into everything. All I can say is that kids are extremely resilient and if you give them the power, they will overcome anything.

Brenda - posted on 03/18/2009

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My son, Casey, is 10. He was diagnosed with membraneous subaortic stenosis at age 4. At some point he will have to have surgery to remove the membrane. The gradient measurement is currently around 30. We will start looking at surgery when it gets over 60. I think Casey is more concerned about the surgery than I realize. He told me the other night that he is praying for a miracle so that he doesn't have to have the surgery. He has a very strong faith, which I think is one of the good things that has come from his condition.

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