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Living With CHD: Learning Barriers for Children with Congenital Heart Defects

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Our oldest son has a severe congenital heart defect, Truncus Arteriosus (type 2).  He is 9 years old now and getting ready to enter 4th grade.  When he had his most recent open heart surgery in August of 2015, we visited with a social worker at Children’s Mercy hospital.

During that most recent hospital stay, we were there for 6 days.  In on a Tuesday for pre-op, then surgery to replace his conduit on Wednesday, and home the following Tuesday.  While we were in the PICU, the cardiac social worker stopped by and asked “how is he doing?” shortly after they had stabilized his heart rhythm after a terrifying episode.

He was {finally} sleeping, and while we sat, we talked.  We talked about how difficult it was to get him stabilized, and how he was doing medically.  Then she asked me how I was doing.  Not too good, honestly.

Living With CHD: Learning Barriers for Children with Congenital Heart Defects

Living With CHD: Learning Barriers for Children with Congenital Heart Defects

For a repeat surgery you go in thinking “I’m a veteran! I’ve got this.”

After his significant hospital stay his first go around (two open heart surgeries, one heart catheterization, 8 days on ECMO and being resuscitated twice) I was a nervous wreck.  We were there for nearly four months the first time.

Then she asked me how he was doing academically.  She sent us in a direction that I had no idea even existed: Cardiac Neuropsychology.

It has changed both our outlook and our lives, and if you are a heart family as well, it just might change everything.

Thank God for social workers!

Do you have a heart child? Is he/she school age? Do they struggle with different subjects including math and reading and more? Have you been told that he/she will need special education intervention in school?  You are not alone.  In fact, this is quite common in heart kids.

So what is the difference between a heart kid’s learning behavior and a “normal” kid’s learning behavior?  More than you might think.

The heart is one of the very first organs to form during pregnancy, and many times by the time you realize you’re pregnant, the heart defect has already occurred.  You’re pregnant for another NINE months after the heart defect has taken hold.

What IS happening during that time in pregnancy?

Lots of brain and organ development.

What is NOT happening during that time in pregnancy? The heart is not pumping efficiently, and thus not pumping enough oxygenated {healthy} blood to the brain and other organs while they are developing.  The brain is simply not getting the “food” needed to grow and to thrive.

Not only is the child’s organ development impeded by this altered blood flow, but studies have shown that children placed on heart-lung bypass have an increased risk of damage to the brain as well.

So, they have issues before birth that we may or may not know about, and then when they have open heart surgery to repair the defect in the heart, that may damage/diminish the function of the brain as well, mostly related to memory from what I understand.

We met with the Cardiac Neurodevelopmental team in Kansas City this January for extensive testing.  They tested his IQ against other children his age, had him complete multiple cognitive tests as well as reading comprehension tests etc.  While he is above his age level on visual-spacial problems, he is on the very low end for other subjects.

At first his school wanted to start a 504 plan for him.   After meeting with the team in Kansas City (also with a neurologist – and we are scheduled for another MRI of his brain) we have since met with his school and started a full-out Individualized Education Program (IEP) specifically to help him and to teach him the way that he learns.

His brain just doesn’t work the way other kids’ brains do.

He can’t learn the way they can.   Some parts of his brain were damaged simply by having the heart defect, then his multiple surgeries and the 8 days on ECMO (external heart and lung machine used as long-term bypass) sure didn’t help.

If you have a child with Congenital Heart Defects, I highly encourage you to inquire about this program at your next cardiology appointment.  Nothing but good can come of it, and I am so glad this program is available.  It has already changed our lives and our outlook.

Related to Heart and Congenital Heart Defects:

Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}
The Day I Became a Heart Mom {1 in 100}
What I’ve Learned Being a Parent of a CHD {Heart} Child
Curve Balls + Open Heart Surgery + Life Updates

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34 Comments

  1. My grandson has heart pain he's 5 he keeps telling my daughter his heart hurts an her doctor says it's just heartburn an acid which I have severe but my heart does not hurt I never heard a child say there heart hurts an in tears any suggestions or ideas I'd appreciate she's taken him more than once nothing is getting done
    Reply
    1. My daughter also has heartburn and acid reflux and also says her heart hurts/burns. Started at 5/6 and she’s 7 now. I think this is usually how children describe heartburn, hence the name. I doubt it is a heart problem. I don’t think most heart problems “hurt” necessarily, although family knows best so if you think something else may be wrong listen to your gut! I would try tums, anti acids, or something else for a bit and avoid extra spicy foods and see if that helps, also maybe chart the foods he’s eating and when he’s saying his heart hurts and see if there is any similarities in food types or the amount of time after he’s eating! I also used to say my heart hurt when I first started having acid reflux. Goodluck!!! When our babies hurt, we hurt!
      Reply
  2. I am in my sixties and had an ASD repair at eight years old. I have noticed my entire life that something is just not quite right with me; strength, energy, ability to do math, clarity of thought, etc.. Everyone said my heart was "fixed" so I was fine, but I have never been fine no matter how hard I worked, tried, struggled, and hoped to be able to keep up with life. How blessed it would have been to have a learning disability diagnosed in math rather than just being made to feel stupid. How wonderful to have known that so many of my struggles that I have worked so hard to overcome, may have been determined before birth due to the quarter size hole in my heart that was not repaired until eight years old. If I had known this information when I was younger, I would have approached life so much more calmly and with gratitude rather than just feeling discouraged and overwhelmed all the time. Parents, please talk to your kids and let them share with you their inner struggles and feelings. Thank you for bringing all of this out in the open. It is the first time I have ever heard it addressed; it makes perfect sense and answers a great deal of questions.
    Reply
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  4. *siiigh* You have NO IDEA how much I needed to read this today! My 17 y.o. son has HLHS and has developed a LOT of complications. He has always struggled with school and has ADHD symptoms. The teachers treat him differently, and no one has been able to pinpoint what's "wrong." I looked online and can't find a program like this in Central TX (We are in Austin), but saw in your comments we may have something in Houston, at TX Children's. I am going to push, push, push for a program similar to this in Austin, and will ask cardiology for a reference to Houston in the interim. Thank you so, so, SO much! <3
    Reply
    1. Ughhhh! Yes!! Even though my little guy is only 10 now, he was really, really struggling with simple mental math. I used to dread going to school conferences, but now that they know HOW to work with him, he is doing so much better! Keep me posted as to whether you are able to find a location near you. It is worth it! Heart hugs, Ashlea
      Reply
      1. I am so glad I have seen this my granddaughter has CHD major surgery at one year. She is a social and happy child but I notice she is not doing good in math memory seems to forget. We send her tuition private for math and she does well. But she does forget what she is told in a large class. So she is not upto the standard she could be. She can read and write and Spelling can be a problem. The schools here in Uk make No allowances for CHD children. But I never realised is could be a problem now I can tell them at the school.
        Reply
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  6. Ella and Robert both see a developmental psychologist up at CMH. While neither have deficiencies large enough to warrant an IEP for academics we have had on for speech. But the info we found out helps greatly with school. The teachers are all aware of "how" she thinks and learns and we can accommodate for it. Did the same for Robert!
    Reply
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  9. My son is about 28 years old born with Truncus Arteriosus with VSD. He also has a 22q11 deletion which is responsible for the learning issues, math concepts, reading, etc. This has also been called Velo-Cardio-Facial Syndrome, DiGeorge Sequence, Shprinzten's, Catch 22... He also has Asperger's, short term memory, hypotonia and some psych issues.
    Reply
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  13. I am more than furious with our school district. My son who's had three open heart surgeries and facing a fourth is a senior in high school and has always had trouble with his Math. He's received tutoring since 4th grade but still struggles. We were told that despite not missing any school this year (1/2 day was taken for an appt with a cardiologist and 1 tardy) he absolutely can not walk for graduation because he has one math class that he has to make up during the summer. The assistant principle says absolutely not he cannot walk because the rules clearly state he must have all of his credits. I am livid and don't know where to turn.
    Reply
    1. Oh I would be livid as well! I know some other kids that hadn't completed 100% of their schooling that still got to walk - with no medical issues. When is graduation? Or has it already happened? I am thankful that they have implemented a program like our son visited, but I wish they would have had that available to your son and other older kids as well. I'm so sorry to hear that - how aggravating!!
      Reply
    2. My son, also a senior, has struggled with math always. I wish I had known there was an issue like this a long time ago. I requested to have him tested on many occasions for any learning disabilities, they never followed through with the testing, but did give him extra help on occasion. He has gone to summer school the last two summers to make up the math credits. He went thru those with ease because they weren't focused only on Algebra or Geometry. This year, he will graduate only because he requested Alt School and the teachers and coaches came up with an online Math program just for him on finance and interest to keep him in regular school. I'm sorry for the hardship with your son, I know how hard they fight just to stay healthy, let alone keeping up with their classmates.
      Reply
  14. We are BLESSED beyond our wildest dreams. Joshua has HLHS, three open heart reconstructions, ECMO, heart caths.... His school created his own program for him. He has his own spelling words, his own math skills, etc. He is fine socially with her peers and they make sure he participates in anything and everything the other kids do for fun. He has had teachers that love him, encourage him, and bend over backwards to help him succeed. For the last two years, his classroom teachers had come to our home after school 2-3 evenings a week to tutor him one on one. They know they can't give him all of that during school hours and have graciously spent their time helping him grow and learn. We know that this is very different from what most families experience. We are genuinely appreciative and make sure the school and his teachers know how grateful we are for all that they do.
    Reply
    1. Oh my goodness, that is amazing! We hired a private tutor (she's also an elementary school teacher) that we meet with twice a week. That combined with the new IEP has already made a huge difference. We'll continue working over the summer so that he's more prepared for 4th grade.
      Reply
  15. My son had open-heart surgery when he was 4-months old to repair an ASD and a VSD. He sees his cardiologist every two years. Is this something to look into for him because his heart is fixed its not something I need to address? (He's 4 1/2.)
    Reply
    1. Hi Apryl! The way they explained it to me, is that most (if not all) of the damage to his brain occurred when he was itty bitty. In my opinion, it wouldn't hurt to ask.
      Reply
  16. My daughter is complex CHD baby, as well. And youre 100% right, the bypass machine and how many times your child have to have open heart surgeries is a big factor. Same for the children who are single ventricle babies and who will never have 100% O2 levels. At Texas Children's, they are very aware of the possibilities of delayed developmental issues and actually select a neurological team to follow and stay with your child as he or she grows and develops throughout their life; unfortunately not very many parents are willing to participate because as you know we go to the doctor a lot. It's a great part of the whole scoop of what our children have to go through and I believe we've been given a great tool. My daughter is much younger than your boy and we've just started our journey but they've provided this team and should or when developmental delays start to show they line you up with specialist to immediately to start tackling the issues in hopes to help push progress with our children. Amazing and we are so grateful to be able to not only be a part of research but be in a position were we can get help early on. Best of luck to your little boy!
    Reply
    1. Thank you Stephanie and same to you! When he was there the first time, in 2007, this was not an option. They had discussed holding him back in 3rd grade, but as the team in KC told his school, it doesn't matter how many times you teach him, if you're not teaching it in a way his brain understands, he won't grasp it. How empowering!
      Reply
  17. My daughter was born with complex CHD and underwent a Fontan among other things. She is almost 29. She struggled more socially than academically in school (math was torture!). I wish there was more information/awareness back then to support these co-existing issues. As a mom, I feel a little guilty for not advocating enough.
    Reply
    1. I completely understand. And YES! Math is torture. For my son, it is math and reading - and social as well! I'll be delving into attention and ADHD in heart children soon. Very interesting stuff and there really isn't enough about it on the internet.
      Reply
      1. i am interested in your thoughts about adhd and heart kids as well. my husband was born with transposition of the great vessels, and some holes in his heart. he is one of the oldest surviving people with his repair, the mustard procedure. he has baffles of unknown materials in place-his records cannot be found at ku med center. we have been going to mayo for his treatment now-and it's hard without those records. anyway-i wonder if it's appropriate for him to take meds for adhd?
        Reply
  18. Thanks for sharing. I was wondering if you knew what was being researched or done with the topic in adults with CHD? I am 23 living with CHD and know this is fairly new information and subspecialty. I have been learning a lot about how neurodevelopmental and neurocognitive issues can be linked with CHD which explains many of the issues I dealt with growing up and some still do deal with. just wondering if you have any info on how to help adults living neuro problems. thanks
    Reply
    1. Hello Erica, I don't have too much information about adults, but I can absolutely reach out to the team in Kansas City and see if they can point me in the right direction. I'll keep you posted! I'm looking forward to talking more and more about heart and CHD.
      Reply
  19. Thank you for this post. We were referred to the team after my son had open heart surgery this past summer. We have not gone to an appointment yet, because our son has an IEP for neurologic problem. We were wondering if they could be helpful, and your blog post was helpful
    Reply
    1. I'm glad! We will be opening up and discussing more about how CHD affects the family. I don't think there are enough resources available for us. Happy to help!
      Reply
      1. My son also has truncus arteriosclerosis he turned 14 this past March. He has had 3 heart surgeries, brain surgery,kidney surgery,and will be having vascular surgery in July. He has struggled with school since 3rd grade but since the beginning of junior high it has been super hard for him thankfully I think we are now getting the help he needs(crossing my fingers). And our social worker as well was and is a big help!! :-) God Bless
        Reply