My newest nephew, Jace, was born with a congenital condition called sagittalcraniosynostosis. This is a serious genetic challenge and would once have guaranteed the death of any child born with this condition. Jace’s skull is rigid. It cannot grow and expand. He does not have a “soft spot” and other areas also are fixed when they should allow for growth and expansion. This condition was not obvious from looking at Jace; it was invisible at birth. He looks and acts like a normal child. But if his condition had not been found, and, if a skilled and knowledgeable surgeon was not available to rebuild the skull, his brain would soon grow too large for his cranium and if this problem still went unnoticed Jace would have died.
Here is a photo of my delightful nephew shortly after birth.
Here is a collection of photos showing how Jace’s cranium looked before surgery and how it looked after it was modified. If you are squeamish you might not want to look at this part. The bottom (white bone colored) shows Jace’s skull (cranium) before surgery. There is a side view showing the room for expansion and there is a top view showing room for expansion there and yet little of the brain is left exposed. I find this surgery so amazing. It sure looks like these surgeons knew what they were doing and we are all very grateful. It also looks expensive.
And here is a photo of Jace after surgery (two days after). I am a bit worried still about complications but Jace is already home with his family. He does not have to wear a helmet and he has a zigzag scar across his entire head (he can pretend he is Harry Potter someday, except his lightning is longer and in a different place). I call him our little Road Warrior.
My niece and her husband both have good jobs. They are fortunate to have good health insurance. Their insurance passes the “Jimmy Kimmel Test”. Jimmy Kimmel’s new son was born with a congenital heart condition and he needed immediate surgery. Of course Mr. Kimmel has adequate insurance but he was very emotional when thinking about families who might be in a similar situation and not have enough health insurance, or indeed any health insurance. He said that a great test of your insurance would be to see if it would cover the costs of a child with special needs for at least the first year of the child’s life (but I say more coverage is needed because many conditions persist after one year.)
If you are lucky enough to get good health insurance through your job, or because you are affluent enough to buy it you will most likely be covered. However, if you rely on the ACA, also known as Obamacare, or if you need Medicaid you need to keep an eye on Congress right now because the health plans they are trying to vote on do not pass the Jimmy Kimmel test.
If the Republicans pass their healthcare plan Jace’s condition could be considered a preexisting condition (because he was born with it) and his treatment might not be covered.
Even if you don’t usually do anything that is political you need to pay attention to this. There are people out there who are trying to muddy the waters by spreading arguments that sound logical but which are not accurate. These plans, especially the one in the Senate, do represent an actual cut to Medicaid that will affect all who use them. The plans take Medicaid money away from the states and the states will not be able to offer full coverage for anyone without these funds.This is not really politics. This is your life and the lives of your children and your parents. Send a card to your people in Congress, make a phone call. You can look them up on the internet. Just this one time let your representatives know that you know the insurance they are trying to give Americans is inadequate to our needs.