Congenital Heart Defect Baby(repaired) Now Older, Anyone Else?

Updated on August 01, 2012
T.E. asks from Flat Rock, MI
13 answers

THIS QUESTION IS REVISED FROM EARLIER....My son had heart surgery at 5mo. old he's now 11 years old with major behavior issues and maybe some learning difficulties. It was told to me by the pediatric cardiologist that 50% of these children have behavior issues and learning disorders.(supposidly its a common thing) My son has seen a phyciatrist for 4 years now and has labeled him with all sorts of labels, and they keep changing them (adhd, Bi-polar, aspergers PDD-NOS) and over the years have put him on many dangerous phycotropic(sp)drugs.(these are not helping him). We also see a therapist. Has anyone heard of surgery (when children are small) and kids having problems neurologically later in life? It was told to me by a mamasource person that there is no way of knowing if he would of had this behavior anyway without the surgery. True!!! we will never know, however, since its been documented these children have problems, I was wondering if any other mom's have children who had heart surgery too.

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S.S.

answers from Detroit on

If you are open to thinking outside of the box, I have an idea that I would like to share with you. It's not illegal!

S.
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C.C.

answers from Detroit on

T.,

My daughter (born at 35-37weeks / now 7 1/2)had a heart catheterization at almost 3 years of age due to close a PDA or Patent Ductus Arteriosis (murmur that was supposed to close soon after birth). She has also had three ear surgeries for tubes. She has experienced developmental delays and currently receives assistance through an IEP at school. She is pulled out of the regular classroom for Math, Reading, Behavior Couseling & Occupational Therapy. We also take her privately to another Occupational Therapist to help with her fine motor delay.

We did experience behavior problems but soon realized that when she felt overwhelmed with the work being presented she would become frustrated and bored but didn't know how to express it. The teacher was very instrumental in determining when the behavior would occur (during core academics). About a month ago we started her on an ADHD medication that has helped improve her focus therefore improving her behavior in class.

I'm telling you all of this info as there could be a reason behind the behavior that hasn't been realized...yet.

Hang in there and don't give up!

C.

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A.O.

answers from Kalamazoo on

I also have a child who has CHD. He had one surgery as a newborn to repair a coarctation of the aorta and another surgery at age 3 to repair his mitral valve. So far he's hanging in there and we're hoping to make it at least until adolescence before another surgery. Fortunately we haven't noticed any huge behavioral or develpmental issues and I had actually not heard of there being a corollation between the that and CHD. They did tell us after his second surgery that many kids will suffer nightmares as a result of the anesthesia. And he sure did. For nearly a year afterward he would wake up screaming at night with various bad dreams. Finally that seemed to go away but he still has sleep issues to this day (he's now 9 years old). But that's all we've had to deal with. Otherwise he is a happy, intelligent, social wonderful kid. I guess my advice would be to just focus on the problems your son is having and get him the help he needs without dwelling on what may have caused the problems he has. So many heart healthy kids have those issues as well and and there's just no way of knowing if this is related to his surgery or not. Good luck!

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P.L.

answers from Detroit on

I'm the mother of a 5 yr old. She has had 3 heart surgeries (HLHS)and we so far are one of the fortunate ones because she has come thru with flying colors. She has a short attention span and is not real focused at times but is it just the age? We'll have to wait and see. I do however know that lots of the CHDers have many different types of issues. Again... would they have issues without the heart problems????? We'll can never be sure. There are also lots of Heart Healthy children with problems too.

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K.T.

answers from Detroit on

Hi T., I have a 10 year old son that had heart sugery at 7 days old. He had coarctation of the Aorta. At a year old he was tested and we was told he had a speech delay. He did not talk. Started school ( early on Look first).at 14 mths old. At the age of 4, he was DX with autism. As he has gotton older his behavior has been worse. Just last summer we went t5hrough another round of testing and was told, he has MCDD Multiple Developmental disorder. It encompasses a lot of disorders. ASD, Bipolar,adhd ,Ocd, the list goes on. At the hospital,we were told to watch him closely for developmental delays. The Dx of MCDD was very startling,That DX has a high rate of the child being psychotic as they age.He was resusitated at birth and was subjected to oxigen and a lot of drugs.I knew the days after bringing him home,something was not right with him, but thought he was not attached to me,because of the hospital stay. 23 days. He was premature and low birth weight. 4lbs. he had many ear infections and tubes,asthma. K.

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P.R.

answers from Detroit on

Get the book "Lost At School" (www.lostatschool.org) by Dr Ross Greene. The subtitle is more descriptive of the book (check it out at that web site).

It will help you understand your son.

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D.V.

answers from Phoenix on

Yes my son was two days old when he had surgery. They placed a patch on his aorta. I applied for ssi and a month later he was approved. Well he revived it until he was 4 yrs old. Me being the dummy that I am let them take his benefits away. I didn't do the review so they took it away. Well he is 14 now and he is having some issue with breathing, not having enough strength, he missed most of last year of school because of some stomachs issues, he has an anger control issue, and I am seeing some trouble learning in school. Now they r telling me they need to go through his thigh and put a stint where they did the correction cause it is narrowing again. So I re applied for ssi and i was wondering if anyone know if I will recieve his benefits, since he was on it when he was born. They claimed him disabled at birth. Girls give me some feed back please.

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M.M.

answers from Boston on

Our 11 yo son had heart surgery at 5 days (transposition of the greater arteries). He has had a variety of tests, services, & diagnoses over the years for learning difficulties despite being very bright. He hovers near the spectrum with no official diagnostic label within that realm. We are now questioning the possibility of ADHD along with his documented sensory processing issues. From what I understand it is not the actual heart defect itself that is a possible cause (or exacerbation) of a LD but rather the effect of the surgery. For his, my son's body was essentially frozen and so blood flow was almost nil for minutes. You have to assume there will be some brain damage even if it's a short time in that state. No, we can't ever know what it would have been like without the heart problem and surgery, but I do believe that his medical history plays a role in his current level of difficulties and his ability to deal with them. Also, I was under the understanding that kids with heart conditions are not great candidates for most of these drugs... is that not true? Does it depend on the type of condition? Curious about that one as we begin to explore ADHD.

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M.M.

answers from Detroit on

I realize I'm a little late with my response but wanted to post one anyway. My son, now 12 years old underwent open-heart surgery at 7 weeks of age, for an Aorta-Pulmanary Window and an ASD murmor. Prior to the surgery he was in congestive heart failure, failure to thrive and reflux. Over the past 12 years he has had one dx after another and trust me, I have taken him to the best of the best docs - or at least that's what I've been told. He's had years of psychotherapy too. Immediately after surgery we dealt with night terrors and colic like symptoms. By the age of 2 he could not fall asleep unless myself or husband were literally holding onto him tightly, and if we loosened our grip, he'd wake up. He was diagnosed with ADD, ADHD, Bi-Polar Disorder, Anxiety, Psychosis, Depression, Cognitively Impaired, Learning Disabled in Reading Comp., written expression, and math calculation. Socially immature. Finally, he was diagnosed with Autism this past October. I too have wondered whether or not there's a correlation b/w the heart problem, surgeries and his current dx. I've literally asked his docs at Children's Hospital of Michigan in Detroit and I've never gotten a direct answer. I think it's a combination of factors that lead to these dx. Certainly the heart complications, o2 deprivation and surgeries play a large role in them. That is my opinion for sure!! I'd be happy to talk to you more if you'd like. Just message me and I'll get back with you.
M. M.

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K.M.

answers from Detroit on

If you feel comfortable with your son's school may be you could contact his teacher or the school counselor to see if they have any suggestions.

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J.H.

answers from Detroit on

I've never heard of a connection between heart surgery at an early age and neurological issues later on...

But I have an excellent book that may help you with your son. It's called "Healing the New Childhood Epidemic: Autism, ADHD, Asthma and Allergies" by Dr. Kenneth Bock. Based on what you said with your son's diagnosis being all over the place, I think this would be the PERFECT book for you! Dr. Bock talks about how many of these four disorders are related and kids who have one of them often present with symptoms of the others. He explains how it's all connected in our internal systems (digestive, immune system, etc) and then presents a healing program that involves altered diet (often removing dairy and/or gluten/wheat) along with nurtitional supplements. He gives many real-life case studies of kids that have been helped immensely by this healing program - most of them don't even need the psychotropic drugs once they're on this program (and some of the cases start out VERY severe). I highly recommend this as I've watched it help my own nephew. He's gone from a diagnosis of high-functioning autism to PDD-NOS to now Aspergers (so he's slowly moving "up" the spectrum in a great direction). He used to suffer from some pretty severe behavioral issues but now if you see him, you only see a few "quirks" which are endearing.

Even though I have been blessed that, so far, my daughter hasn't shown any of these symptoms (as it seems SO many kids are affected by them these days), I decided to read the book myself and found it fascinating and incredibly insightful. And if your younger son is starting to show similar behaviors, the altered diet may work for him as well.

Best of luck!

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M.C.

answers from Saginaw on

Hi, I am a mom of 5 and my oldest who is now 8 was born with a congenital heart defect as well called pulmomary stenosis. he has has a total of 4 or 5 surgerys now his last one was to repair which now he has a stent. his first surgery was when he was 3 days then 8 days then 3 and almost 4. he is doing great now still have checkups with the cardiologist. but to get to your question about behavior problems. my son has not had any behavior issues.

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L.O.

answers from Detroit on

I think you would have a hard time correleating behavior issues now with surgery as an infant.

There is noo way to know if he would have had behavior issues even without the surgery.

Have you gone to a psychiatrist for your son? YOU probably need a psychiatrist and a psychologist. It should be covered under your health inusrance.. Have him evaluated by a professsional. There may be a medication that would hhelp him. Or maybe counsleing would help him.

Is he being taken out of class for "resource room" or other special help??/

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