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Help Fionn Get His Cranial Orthotic Helmet

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I hate to be doing this, but here I am. As most of you already know, and for those of you who don't, Fionn was born at 36 weeks due to Interuterine Growth Restriction and my liver beginning to fail. Although I was given two rounds of steroids to help Fionn's lungs to develop, an hour after delivery he was transported to the NICU and put on a ventilator.  After 24 hours they tried to extubate him, but he then needed life-lined to a level 3 NICU.




Fionn was in the NICU for a month before being allowed home, but was then rehospitalized after he stopped breathing in his sleep (which was later diagnosed as a BRUE).

Due to his time in the NICU, Fionn had trouble turning his head to the left (Mild torticollis). Since he is a preemie, he is also delayed in his milestones which means that he has spent more time lying down before he was able to sit up. Even now, he still cannot fully sit up unassisted.

We noticed the severity of his flatspot early, and brought it up at his 4 month check-up.  His doctor gave us re-positioning techniques to try at home and stated that once he started sitting up more it would round itself out. We increased tummy time, we made sure to switch which side we held him on, repositioning pillows,  everything. By 6 months, his head had gotten worse (although we thought it was better, his hair was just masking it.) His pediatrician referred us out to a neurosurgeon at Riley's Children hospital. 

Fionn was diagnosed with Severe Plagiocephaly last month, and we have been arguing with insurance since then to have his Cranial helmet approved. I received final word today that his helmet will not be approved, and the appeal was denied despite the doctor stating it was a severe case and needed immediate correction.

Without the helmet, Fionn's skull will begin to fuse as he grows older in this shape.  This can place added pressure on certain spots of his brain, and is already putting minor pressure on his right eye where the flat spot is. He has his first appointment tomorrow, and they're asking for $500 up front (they originally wanted half) which I can cover, but it will be a significant hit. I can't, however, afford the $300 monthly payments no matter how I redo my budget. 

Fionn will be wearing his helmet 23 hours a day for the next 5 months, possibly longer. He will require bi-weekly check ups at first to see if the helmet is working before it goes down to monthly. Insurance will cover the check-ups, but will not cover the helmet re-sizing as it is needed.

I hate asking for help, but sometimes you just have to swallow your pride and do the thing. So here I am, doing the thing. If you can't donate, a share would be super appreciated.  Fionn has already had a rough start, and I just want to give him the best possible future that I can.

We appreciate all your help. <3

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Donations 

  • Dane Roberts
    • $5
    • 6 yrs
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Organizer

Holly Iles
Organizer
Indianapolis, IN

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