parents of children's with TOF? - Mothering Forums

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Old 05-09-2013, 11:52 PM - Thread Starter
 
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My daughter has TOF. They almost didn't catch her heart defect. Luckily, she had jaundice when she was first born and a Dr list end to her heart and fought the pulmonary atresia & the ToF. When she was 5 days old she had surgery. Now she is 5 months d and her next surgery is coming up. How did you guys cope with the surgeries? What about your children as they got older? WhT were their thoughts and opinions on it?
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Old 05-10-2013, 08:22 PM
 
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Originally Posted by Katelynn 129 View Post

My daughter has TOF. They almost didn't catch her heart defect. Luckily, she had jaundice when she was first born and a Dr list end to her heart and fought the pulmonary atresia & the ToF. When she was 5 days old she had surgery. Now she is 5 months d and her next surgery is coming up. How did you guys cope with the surgeries? What about your children as they got older? WhT were their thoughts and opinions on it?

 

 

I don't have any information to share but I saw your post and wanted to bump it up for attention. Hopefully someone will have something to share that will be of help.


Elijah Mercury (7/2009), TTC #2 with my new soon to be DH! Tattooed, 29 year old cancer survivor! treehugger.gif

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Old 05-12-2013, 07:26 AM
 
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Hello,

 

 

My 10 year old was born with TOF/EA.  She had the repair done at 14 hours old.  She is absolutely fine.  You would not know she was born with a birth defect unless she told you.  She has only had the one surgery - the gap between her esophagus and stomach was quite small.

 

If you have a list of questions, post them and I will do my best to answer them over a few days.

 

I will also get started with a her infancy and work forward.

 

DD had her surgery at 14 hours.  She sailed through and was out of the hospital at 2 weeks.  Everything was absolutely fine until about 6 months - when she started solids.  In hindsight I really felt I should have been given more guidelines (or looked them up!) on safe feeding and TOF.  I probably would have delayed solids a bit longer (and given myself a longer reprieve) if I knew it would be an issue.

 

Children with TOF/EA can have scar tissue at the surgery site, and issues with motility of the esophagus from the surgery.  DD would get food stuck in her esophagus very frequently from the time she was 6 months- 3 years.  When the food got stuck she would make this horrible gasping noises - and people would think she was choking.  It was very scary the first few times it happened.  Around this time she started getting chest infections, and it took awhile to realise that what was probably happening is that when she had these "stuck food" incidents, she was at increased risk of aspirating her food - and getting aspiration pneumonia.  she always worked the food out on her own - but sometimes it would take hours.  She once was being prepped for food extraction when she magically worked it out on her own.  She outgrew this issue as her esophageous grew. Getting food stuck is common in young TOF, but many outgrow this issue. 

 

So - concrete advice:

 

1.  look up advice on feeding young children with TOF

2.  different kids "choke" on different foods.  Keep a list of what works and does not work with your kid.  Foods DD had issues with - chewy breads, like pizza crusts, overcooked fries, apple.  

3.  Encourage kids to chew, chew, chew!

4.  Do not feed a child if they are anything but calm and seated.  If they get food stuck, try and keep them calm.  A crying baby is more likely to aspirate the food that is stuck than a calm one.

5.  Be extra careful around feeding of solids if they have a cold.  

6.  a lot of kids with TOF/EA also develop reflux.  Reflux can be tied in with lung infections in kids with TOF/EA.  So..if your child develops lung issues, have them check for reflux. 


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

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Old 06-06-2013, 11:58 PM
 
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Hi, op, did you mean Tetralogy of Fallot? My almost 12yo ds was born with it. He thankfully only needed one surgery, the full repair, at 10 weeks old. His pulmonary valve was removed, but not replaced. It may need to be replaced when he is an adult, they told us anywhere from 20-50 years. Hopefully by that point the surgery will be much less invasive. He was home in less than a week, and thankfully has had no issues with his heart since. He just had an echo done, and everything looks great. It's hard to say how he feels about it, he's on the autism spectrum. He has Asperger's. He's very high functioning, and knows about his heart of course, but never says anything. He has a microdeletion of his 2nd chromosome, and his geneticist thinks it's all connected. He sees his cardiologist twice a year, his geneticist about once a year, and is thankfully rarely sick.


Student mama to one awesome,talented and unique dd,15 and one amazing, sweet and strong ds,12(born with heart defect Tetralogy of Fallot,also on the autism spectrum),9 cats,and 2 gerbils.
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