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Little Girl With Rare Condition Could Die Whenever She Gets Upset

by Kiri Blakeley on November 16, 2012 at 11:56 AM

Imagine a world where you could never let your kid get hungry, tired, or even upset. Where, in short, you had to keep your kid happy and smiling at all times. This is the hell that Natalie and Paul Fenton, a couple in the U.K., entered into when their daughter, Ava, was born with a rare condition that made her heart and breathing stop whenever she was stressed or had any "strong emotion." If you think it's difficult enough to control your kid from having crying jags or temper tantrums -- imagine the extra pressure Natalie and Paul had. Oddly, though, it seems to have worked out for the best.

Natalie and Paul became aware that there was something wrong with Ava when, at 6 months old, she had her first seizure and passed out. At 9 months old, she had a six-minute-long seizure. Doctors feared she might die if her heart and breathing couldn't be restarted. At first, doctors thought Ava was holding her breath during temper tantrums. Eventually, however, they realized that Ava's heart and breathing stopped whenever strong emotion cut the blood supply to her brain. She was diagnosed with reflex anoxic seizures (RAS).

Natalie says that anything would spark a seizure -- from her leaving the room to Ava falling over. Terrified, she never left Ava alone, not even for a moment. Says Natalie:

We didn't to be parents who mollycoddle their children -- but we had to become like that pretty quickly.

In order to try and prevent Ava from becoming upset, the baffled parents had to learn how to "negotiate with" or "distract" Ava when she misbehaved. Punishing her was only reserved for dangerous situations when she might hurt herself. They now say Ava is a "very good negotiator."

Parents who don't discipline their children might make everyone nuts, but Paul and Natalie really had no choice. Harsh words could actually harm their baby. Imagine the guilt if they yelled at her about something and she died! Sheesh.

Luckily, Ava, now 2, is fitted with a pacemaker that controls her heart rate, so it never goes over or under what might spark a seizure. Apparently most children grow out of RAS and while it's scary -- it's usually benign. Ava's was an extreme case.

Perhaps in some bizarre way, Ava's condition helped this couple become better parents. They really had no choice but to learn how to discipline in the most loving way possible.

Had you heard of RAS? Can you imagine having to keep your child from ever being upset?

 

Image via Tacit Requiem/Flickr

Filed Under: in the news, tantrums, toddler health

Comments

5
  • MomLi...
    --

    MomLily67

    November 16, 2012 at 2:06 PM

    Wow, how scary, and it's also smething to consider if you have a child who shows similar symptoms.


  • Angel...
    -- Facebook comment from

    Angela Breunis

    November 17, 2012 at 2:33 AM
    My daugther who is now 4 had RAS, she grew out of it recently. She would never go 6 minutes like the little girl in the story but she would go for like 30seconds to a minute out and when she came too she was very limp and tired. It was so scary. The good news is she did grow out of it.
  • jalaz77
    --

    jalaz77

    November 17, 2012 at 8:52 AM
    Scary.
  • Eliza...
    -- Facebook comment from

    Elizabeth E. Fulmer

    November 17, 2012 at 6:06 PM

    Yes ,that is very scary situations.Thank God she is okay.The parents looked at it in a positive way to learn to handle their situations.


  • Loren...
    -- Facebook comment from

    Lorene Ordal

    November 20, 2012 at 8:52 PM

    I would love to hear how they handled everyday issues. I've never been one for physical punishment, I believe that if a parent is smart enough to teach their giving mom giftchildren discipline, there will be less need to punish. It would be great if they could write a book and share the creative ways they found to correct bad behaviour.


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