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A Year in the Life of a Caregiver of a Child with a Rare Disorder

Posted by | 2:10pm on Wednesday, November 12, 2014 | No Comments
Neil

To say it’s been a whirlwind would be an understatement. 

Congenital diaphragmatic hernia (CDH) occurs between approximately 1 in every 5,000 to 1 in every 2,000 births.  There is a 50% survival rate for babies born with this birth defect.

By definition, a rare disease or disorder affects fewer than 200,000 Americans at any given time.  There is some debate as to whether a congenital diaphragmatic hernia is rare, but since it’s on the Global Genes RAREList™, we’ll consider it rare for the sake of this blog post.

But what’s truly rare is having 2 boys with this birth defect, as I do.  And with the 50% survival rate, both survived.

In the Beginning

Things started off pretty rocky when we arrived at the hospital for our scheduled C-section to have our 2nd CDH son as there was a miscommunication between the Maternal Fetal Medicine group (MFM) and the anesthesiologists—the only way our son would be delivered on his scheduled C-section date was by using general anesthesia to sedate my wife.  Our other option was to have an MRI to determine if my wife had any tumors near her spine due to her neurofibromatosis.  The MRI route would mean we’d have to come back the next day for the C-section.  This just added to the already high stress level, knowing that our son would only have a 50% chance of survival and would be whisked away to the NICU within minutes of being delivered.  Read More

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