How often have neglected lumps on breasts, or small septic cuts on fingers turned out to be life-threatening? Once the situation starts getting out of hand, we start regretting our decisions over neglecting initial cues that should have been examined then and there.
The main fuel behind this ignition is the lack of definitive diagnosis, where trusting one doctor may turn out to be wrong, and the next right. So at the end of the day, if the source of diagnosis is wrong and it is caught at a later stage, which medical center can we trust?
In a similar bout of a wrong diagnosis, one-month-old Scarlett had a small stye-like mark on her right eye. Her parents, Brooke Pierce and husband Ryan spoke exclusively to PEOPLE stating that they decided to let that mark slide thinking it would disappear in a day or two. The consequences that followed this decision as we as an overlayered neglected by their house pediatrician, will have you losing faith in our medical system.
Initiating the exclusive interview with People, Pierce began, “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, to their horror, they noticed this stye spreading out over her eye and immediately took her to their doctor. She recalled her conversation with the doctor, “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.” This consolation was not convincing enough to put baby Scarlett out of danger because soon the stye grew so big, that she couldn’t open her eyes.
“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,” reported Pierce to People.
After several appointments, they never gave up and decided to take another opinion. Brooke told People, that what they found out next shook their entire belief in the medical system. Baby Scarlett was diagnosed with deep tissue hemangioma — benign misformations of blood vessels that multiply more than they should, per Johns Hopkins —and that it required immediate treatment. Reacting to this earth-shattering news, Pierce continued, “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.’ ”
“It was heart-wrenching, but at the same time, it gave us peace,” Brooke said. “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.”
However, Scarlett’s diagnosis was treated before it was too late and a ‘miracle drug’ was given to shrink her hemangioma. Shedding light on the incident, Pierce continued to People, “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.”
Regardless of the diagnosis, the hemangioma had an innate effect on Scarlett’s vision, “It was basically telling her eye to shut off and essentially stunting its growth,” Brooke elucidates to People. “If we hadn’t done anything about it, by the age of 7, then she would have been fully blind in that eye.”
However, she shared with People that she found solace through social media because she could connect to other families facing the same 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 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.”
This is a wake-up call to all the parents out there to constantly get their babies checked through several opinions because a mother’s gut feeling precedes any medical claims.