Mom Told Baby's Stye Isn't Dangerous. Then She Finds Out Her Daughter Is Losing Her Sight (Exclusive)

Brooke Pearce tells PEOPLE what it was like advocating for her infant daughter

<p>Brooke Pearce Photo</p> Brooke Pearce

Brooke Pearce Photo

Brooke Pearce's daughter, Scarlett

Two parents who followed their gut instincts and advocated for their baby are now sharing the importance of doing just that.

Brooke Pearce and 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 a stye, 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 the birthmark on 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."

"Initially, they kept telling us nothing was wrong. We were told that it would go away, but we did research on our own that noted they generally tend to stop growing by 8 months and don't need intervention unless they're growing rapidly."

"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, per Johns 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."

<p>Brooke Pearce Photo</p>

Brooke Pearce Photo

"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.' "

"It was heart-wrenching, but at the same time, it gave us peace," Brooke admits. "We did trust our gut. We knew that something was wrong with our baby and we were able to fight for the care that she needed and ultimately get that care."

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."

<p>Brooke Pearce Photo</p> Scarlett's hemangioma

Brooke Pearce Photo

Scarlett's hemangioma

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, her blood 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."

<p>Brooke Pearce Photo</p> Scarlett with hemangioma

Brooke Pearce Photo

Scarlett with hemangioma

Regardless, the hemangioma has had an impact on Scarlett's vision.

"It was basically telling her eye to shut off and essentially stunting its growth," Brooke explains. "If we hadn't done anything about it, by the age of 7, then she would have been fully blind in that eye."

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.

"It was difficult because we had just spent two weeks in the NICU and I had been in the hospital before that with the birth of our daughter, so having my son away from me at home, it sucked. We missed him and he missed us," she shares. "We were super fortunate that we have our in-laws nearby and my parents actually live with us, and they've all been an amazing support system. They were able to take my son and hang out with him and make him feel as normal as possible while we fought for Scarlett's care."

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's been crazy to connect with families on TikTok. I had never met another baby or parent who had a journey like this until I posted my video on TikTok. I was blown out of the water by how many babies have the identical mark Scarlett did on her eye and are trying to figure out what they're going to do for treatment. It's been cool connecting with them and chatting with them, letting them know what we've gone through and what they might experience."

"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 or affecting their vision or 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."

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