Thursday, September 25, 2008

What a Difference a Year Makes

One year ago this week, Bryan, Evan and I were in New York for Evan's surgery to have his hemangioma--a vascular birthmark--removed. Evan was almost seven months old and the time leading up to the surgery had been frustrating and upsetting. Hemangiomas are a type of vascular tumor that resemble a ball of twine that keeps getting larger and larger. The network of blood vessels just keeps growing in some babies, stops growing in others and could eventually go away on its own over the course of several years depending on its size.

Evan, like most babies, wasn't born with the hemangioma. It appeared when he was just a few days old on his left cheek and was hardly visible. They don't know what causes them, but they think it may have something to do with a placenta problem, which is why they are more common in premature babies.

This picture was taken on March 23 (Evan was two weeks old) and you can barely see the dot under his ear lobe.


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I asked the pediatrician about it, and she told us it was a hemangioma, but acted like it was no big deal. I did a little research and it confirmed most of what she said. Unfortunately it was all wrong. We watched for three months as the hemangioma grew and grew, each day Bryan and I were becoming more upset, asking more questions of the doctor, feeling helpless and fielding the sometimes rude comments from adults and children alike who would ask, "What is that thing on his face?"


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Photo Sharing - Video Sharing - Photo Printing - Photo Books



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We finally found the Vascular Birthmark Foundation, http://www.birthmark.org/, and learned all the information we had up to that point was outdated and some of it was completely wrong. We eventually made our way to the Vascular Birthmark Institute at Beth Israel Hospital in New York and met with the world-famous surgeon, Dr. Milton Waner. We also met dozens of other families who were in our same situation. A huge weight was lifted. We finally found someone who took the hemangioma seriously and who could help us.


Had we found Dr. Waner earlier, he could have removed Evan's hemangioma with a laser, but by the time Evan was three months old, the hemangioma had already grown too large. We decided to wait until Evan was six months old to remove the hemangioma so his little body could handle the anesthesia better. The hemangioma continued to grow, eventually pushing up against Evan's ear, which could have become deformed had we not removed the tumor.

We headed to New York the day before the surgery...I tried to keep the mood light, but I know Bryan and I were both a ball of nerves. (The helmet Evan is wearing was to help round out his head, which developed a flat spot--nothing to do with the hemangioma).


I held Evan in the operating room as they put him to sleep. I was nervous, but I also had an incredible sense of calm because I knew we had found the best surgeon and the best hospital to care for Evan. This was the last picture we took of the hemangioma.


The surgery took about an hour and a half--apparently "unhooking" those blood vessles is pretty time consuming. Bryan and I were with Evan when he woke up, and he looked at us like, "I know something just happened, but I'm not quite sure what it was." They had given Evan a good dose of morphine before he woke up, so we decided, with the doctor's approval, to head for home after snapping this quick picture with Dr. Waner (who is absolutely amazing).


Now, a year later, Evan's scar is barely visible. We spent the "one-year anniversary" of the surgery having fun at a nearby farm.

I'm so happy we had the hemangioma removed. Hemangiomas aren't completely harmless, they can rupture and bleed, the can put a strain on the heart from all the extra blood they require and they are disfiguring. Dr. Waner confirmed it was growing up until it was removed, so who knows how large it could have gotten. If any of you know someone whose child has a hemangioma, please refer them to the Vascular Birthmark Foundation.

2 comments:

Maquel said...

I remember Clark telling me that you went through something pretty scary with Evan last year, but had no idea what it was exactly. How scary! Even if it is a supposedly commen thing, anything that happens to little ones is always bad. I'm glad that everything with the surgery was a success.

I didn't know Evan had a helmet. Stockton did too.

Sandy said...

I had forgotten about his hemangioma, I guess it goes to show how well his surgery went and how well he healed.