Port Wine Stains and Perfection

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Our little one is seven weeks old now. As I type this on my iPad she is nestled in my arms for an evening nap…I love all of the little noises that she makes while she snoozes. She is a wonderful addition to our family and I’m constantly amazed at the little miracle that she is.

I think she is perfect.

  

Of course, perfect is kind of a subjective thing, isn’t it? As perfect as I think she is, she has what many would say are some alarming flaws. You see those red marks on her head? They are called Port Wine Stains, or hemangioma. They are a capillary malformation, a genetic mutation that occurred while she was still in utero. Doctors know a little bit about what causes them – they occur in one out of every 300 children – and many people have successfully undergone laser surgery to have them lightened or removed completely. But the larger concern is regarding their depth. One out of every 20,000 babies develops Sturge-Weber syndrome where the hemangioma cause increased pressure on the eyes and brain, leading to glaucoma, seizures, developmental issues, and neurological disorders.

What we initially thought were bruises turned out to be these hemangioma, and as we prepared to leave the hospital with her we were told that she would need to see pediatric ophthalmologists and neurologists. It was a scary and not fun time for all of us as we looked up all of the worst-case scenarios and played them out in our minds.

Our first visit was to the ophthalmologist. She did some simple tests and concluded that the hemangioma did not cause any increased pressure or irritation of the nerves and vessels of the eyes. That was great news, but only half of the answers we were looking for. Our next visit was to the neurologist and unfortunately there were no simple tests that time. He recommended an MRI, MRA, and MRV (all types of imaging) to determine just how deep the hemangioma went and whether it posed any problems to the brain. So he sent off the request for the testing and we waited some more until the medical center called us to schedule.

We had our visit to Hershey Medical Center yesterday. We arrived at 9:30 and she wasn’t taken back for the imaging until shortly after noon. The procedure lasted about two hours and then they monitored her condition until 5 p.m. We finally got home around 6:30…it was a long and stressful day. Our little one received general anesthesia and contrast, and required a breathing tube during the testing. She was a “rock star” patient and hardly fussed for the doctors.

  

Now we wait a couple days before finding out the results and determining what our course of action is. We are hoping for the best, that she has no risk of neurological issues, but even if that is the case I am sure that she will be monitored over the next few years at least to make sure that nothing changes. And if she does show some indication of Sturge-Weber we will undoubtedly have to take more steps to mitigate the risk of seizures and developmental disorders.

But, like I said, she is still perfect to me. She is our little super hero, always wearing her mask, and she has a happy and spunky personality that I do not think will ever be changed by any health condition she may have. I can’t imagine her being different, not even a little bit.

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