Charlie

Charlie is my son. He has an incredibly fat medical file, but I will try to hit the highlights here–for both the curious and those who may be in a similar position.

Charlie was born via emergency C-section in 2007. He was having uncontrollable heart arrhythmias and shortly after birth his heart failed completely. He was placed on a life-saving machine known as ECMO, which can do the work of the heart and lungs when they are too weak. Unfortunately, a potential side-effect of ECMO is bleeding in the brain and after about twelve hours it was revealed that Charlie was suffering from major bleeding in pretty much every part of his brain.

There were many tough decisions to me made, and we chose to let Charlie stay on ECMO for one additional day in the hope that his heart would have more time to rest. In the mean time, his brain would continue to bleed. After twenty-four hours he was removed from ECMO–we weren’t sure he’d last the night–and his heart did what it was supposed to do.

As a result of all that bleeding, Charlie deals with several medical issues. For those of you who need to know the details, here they are:

  • Charlie was diagnosed with “failure to feed” and had a feeding tube placed at four weeks of age. He now eats completely by mouth.
  • Hydrocephalus that resulted in the placement of a shunt at four months of age.
  • A seizure disorder that requires daily medication, but does seem to be under control.
  • Vision loss on one side, which has improved greatly, but is still apparent.
  • Cerebral Palsy-a neuro-muscular condition that causes him to have low muscle tone

He’s also cute as a button.

kid eats lunch

Comments

  1. You’re right. He is INCREDIBLY cute.
    I came over after reading your post on Rage Against the Minivan. Thank you for sharing your story and helping me be more aware/educated. I appreciate it so, so much.

  2. Sylvia Phillips says:

    First just let me say that Charlie is beautiful and you are a great mom! My daughter, Bethany, had a stroke and brain bleed after brain tumor surgery at age two. Now at nearly 13 she is still kind of stuck at age two. She has been diagnosed with Lennox Gastaut syndrome which is really just a fancy name for uncontrollable, untreatable seizures, behavior issues and autistic like behavior. Like Charlie, the stroke left her partially blind. Since I home school, I really like your teaching units. Are you planning to continue to home school as Charlie gets older? It was nice to meet you and Charlie. I plan to check in every now and then. thanks for sharing your lives with me! Sylvis

  3. Your story is incredible, and Charlie looks incredible too. Best wishes with your journey!

  4. 12 years ago I lost my baby girl Grace to a Grade 4 brain bleed. Now I am the proud mom to my 3 beautiful adopted girls Mei who is 3,Jami who is 8, and Carmen who is 13.Jami is deaf and has bilateral cholcher implants.Carmen was born without her right hand.

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