My daughter's ear and lip fell off as a baby. I adore her face because it's uniquely hers, and I'm teaching her to do the same.

• Hillary Orton's daughter Gracie was born with vascular birthmarks that caused ulcers.
• Her ears and lip fell off when she was an infant, and she was left with lots of scar tissue.

This as-told-to essay is based on a conversation with Hillary Orton, Gracie's mom. It has been edited for length and clarity.

When my daughter Gracie was born, I noticed a little red spot on her face. I thought it might be a birth injury and didn't think much of it. We took newborn photos of Gracie's perfect face, and we had no idea that it would soon change drastically.

Before we left the hospital, we noticed more spots, including one on her ear and one on her lip. Doctors said they might just be birthmarks, but we knew it was more serious when Gracie's spots changed into ulcers or open wounds.

At nine days old, Gracie developed a terrible cough. My son had croup as a baby, so I thought it was that, but I called my own mother and asked her to listen. She told me to hang up and call the pediatric nurse. When the nurse heard Gracie, she said to call 911 immediately.

We learned that a wound was covering a third of Gracie's airway

I was home alone with my kids when an ambulance arrived at the house to whisk Gracie to the hospital. That's where we first heard Gracie's diagnosis: hemangioma. Hemangiomas are a common type of birthmark caused by too many blood vessels in the skin. They're why some babies have strawberry marks.

But Gracie's case was much more serious than a strawberry mark. She had segmental hemangioma, which impacts different areas of the face and body. These types of hemangiomas are more likely to become open wounds and destroy tissue. We learned that's what was causing Gracie's terrible cough: she had an ulcerated hemangioma covering 30% of her airway, and it was making it hard for her to breathe.

Doctors started Gracie on an adult blood pressure medication that happens to help with hemangiomas. But things were going to get worse before they got better.

A few days later, Gracie's ear fell off in my hand

My baby started breathing easier, but the wounds on her face got worse. When Gracie was two weeks old, her ear fell off. It was surreal to be holding my child's ear in my hand, wondering what I should do.

A few weeks later, my mom was giving Gracie a bottle when I looked over and cried, "Where's her lip?" Her bottom lip was just gone. Now, at least, we knew what to do: return to the ER.

We spent the entire month of December in the hospital, where I cried and cried by Gracie's bedside. Her ulcerations were just so bad. She was being fed through a tube. I hated to see her in pain, and I was barely hanging in there myself. I lost so much weight that a nurse was concerned I'd have to stop nursing.

While the medication helped Gracie, the first 18 months of her life were full of trauma for both of us. Hemangiomas generally grow most during the first years of life, which, for Gracie, meant more ulcers, wounds, and scar tissue. But finally, as she became a toddler, she began to stabilize.

A chance encounter connected me with resources

Eventually, fate stepped in. I was in Goodwill one day, pushing Gracie in a cart. A woman asked if Gracie had a hemangioma and explained her niece had the same condition. I met the niece and her mother at a local park. Through them, I learned about the Vascular Birthmarks Association and Milton Waner, a pediatric facial plastic surgeon and hemangioma expert.

I emailed Dr. Waner pictures of Gracie and was surprised when he called me back on the phone. I was already fighting with insurance over the medication that Gracie needed, but they wouldn't cover. Dr. Waner explained Gracie needed surgery, or her scar tissue would impact her development. Without a lip, she'd been left with a tiny mouth that made it difficult to speak, eat, or brush her teeth.

I wanted Gracie to get the surgery but had no idea how we'd get from our home in Oregon to New York City, let alone pay for the surgery. Our lives changed when I found the Little Baby Face Foundation, which provides surgery for kids like Gracie with facial deformities.

I love Gracie's face because it makes her who she is

Little Baby Face Foundation has flown us to the Big Apple seven times for seven different surgeries. After the first surgery to widen Gracie's mouth, she was able to do things every toddler wants to do: eat a lollipop and blow bubbles. She could also eat with a fork and properly brush her teeth for the first time.

Today, Gracie is 7. She's still growing, so her treatment will evolve as her head and face reach their adult size. Eventually, doctors hope to 3D print ears for Gracie. She'll need many more surgeries along the way, including one planned to help reconstruct her lower lip.

Looking at Gracie's face, you can tell she's dealing with something. But I don't focus on her scars, ulcers, or discolorations when I look at her. I just see the face that makes Gracie my strong, unique little girl who can take on the world.

She can handle anything, and that makes her beautiful.