Brooke Pearce’s daughter, Scarlett.Photo:Brooke Pearce Photo
Brooke Pearce Photo
Brooke Pearceand her husband Bryan first noticed a mark on daughter Scarlett’s eye when she was “about a month old.”
“We originally thought it was just astye, so we just kind of left it hoping that it would go away on its own,” she tells PEOPLE. “We were actually at a friend’s wedding — and I have had some pretty crazy health anxiety since having our daughter because she was early — and I said to my husband, ‘I don’t know if I’m overreacting, or if this is getting bigger?’ "
After two days, he was able to confirm the mark on their infant’s eye was “definitely getting bigger,” prompting them to have their family doctor check it out.
“He told us it was the exact same as thebirthmarkon her leg and that it was totally fine. You see kids with them on their face and their body and they just go away as they grow up,” she recalls,
The couple decided to get a second opinion and made an appointment with a pediatric dermatologist.
“We wanted more answers and weren’t really concerned with the visual appearance of it or what people might think. It was more that she would get upset or frustrated at times, and as it got bigger, she wasn’t able to open her eye all the way.”
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Brooke and her husband asked doctors if Scarlett was able to see. “Hers seemed to be growing overnight. It was getting so large that she would wake up in the morning and her eyelid would be fully closed. She couldn’t see out of it and whatever she could see wasn’t as prominent. Her eye wouldn’t travel, it didn’t seem as though she was using it as much.”
“It was almost like she had a patch over her eye,” Brooke shares.
At their next appointment, they determined Scarlett had a deep tissue hemangioma — benign misformations of blood vessels that multiply more than they should, perJohns Hopkins—and that it required immediate treatment.
“It made me feel as though my trust in our family doctor was completely gone. They said everything was totally fine and then we followed up on the referral and they explained to us that this was actually causing her to go blind.”
“They had us in for an emergency ophthalmology appointment because we didn’t already have one that day. They were able to get us in and honestly, all my faith in our healthcare system close to home diminished because I was just like, ‘If one person can tell me she’s okay and I can go elsewhere and they tell me she’s going blind, who do I even trust anymore.’ "
Once they learned her diagnosis, Scarlett was placed on a “miracle drug,” that helped shrink the hemangioma.
“They found it when they were dealing with children with heart issues and they just happened to have hemangiomas as well. When they were given this medication, it was shrinking the hemangiomas. So they tried it on children with deep tissue hemangiomas that were causing issues with breathing or eyesight. We gave her that medication once in the morning and once at bedtime.”
Scarlett’s hemangioma.Brooke Pearce Photo
The couple had to track Scarlett’s bodily functions and monitor her body temperature while on the medication.
“It was a lot of tracking and keeping an eye on her breathing, her sugars, herblood pressure, things like that. Thankfully, we recently went to our very last dermatology appointment and got to discontinue that medication, so we’re no longer on daily medication.”
Scarlett does still face some challenges with her eyes after the hemangioma began to clear and she was discovered to have astigmatism in each eye.
“It doesn’t look as though the one with the hemangioma was any worse, but they do want to follow up and put drops in her eyes to dilate them. They’ll be able to look further into her eye and decide whether we need glasses or not.”
Scarlett with hemangioma.Brooke Pearce Photo
Regardless, the hemangioma has had an impact on Scarlett’s vision.
Brooke and her family have leaned on each other and their village as they’ve navigated this and share their appreciation for those who have helped along the way.
As the family moves on from the situation, they feel the desire to spread their story and help other families see there can be a “light at the end” of a scary situation.
“It feels good and I feel like reaching out to other parents has helped us, just because when we embarked on this,I had no idea what a hemangioma was. My mother-in-law has one and didn’t even know what it was called. It’s nice being on the other side and being able to show parents that there is a light at the end of the tunnel, even if the hemangioma is big oraffecting their visionor causing people to stare. It’s manageable and there is treatment out there. It’s something we can talk about and share so we can educate each other.”
source: people.com
