Christine Ward remembers the vague flutter of motherly instinct that warned her something might be amiss.
It was summer of 2006, just before the birth of her third child.
“My pregnancy was going fine and I wasn’t due for another month,” Ward said. “It was the Fourth of July weekend and I thought my water broke.”
She rushed to Spectrum Health Butterworth Hospital.
“They said I had to have her right away,” Ward said. “Over time, my water had seeped out. I had the feeling something wasn’t right, but there was no clear sign.”
Grace came into the world on July 3 with no major signs of distress.
“I didn’t have any indication that anything was seriously wrong,” she said.
Her mind flashed back to the birth of her second child, Nicholas.
“I had to have him a month early because of failure to thrive,” Ward said. “Nicholas is 19 now and he’s so tall we don’t even know where it came from. He’s 6-foot-3.”
Such progress with Grace was not meant to be. She consistently lagged behind on the growth chart.
“She was always sick when she was little,” Ward said. “She had all kinds of ear infections. She got tubes in her ears. She spoke, but we couldn’t understand her until second grade, after she had been in speech therapy for a couple years. It’s because she couldn’t hear.”
Each fall, Grace would walk into her new Northview Public Schools classroom, always the shortest kid in the class, not even hitting the lower rung of the growth chart.
Even Grace’s younger niece, Averie, towered above her.
“She’s exactly a year younger than Grace and has always been so much taller,” Ward said. “We kind of had somebody to compare Grace to.”
Dr. Keefe diagnosed Grace with Turner Syndrome, a disease in which a female is born lacking all or part of one of her X chromosomes. This condition can cause short stature, heart and kidney malformations, ear problems and, later, ovarian failure and lack of puberty.
“Turner Syndrome is considered one of the most common sex chromosome abnormalities,” Dr. Keefe said, adding that it affects 1 in 2,500 live female births.
Dr. Keefe said 1 to 2 percent of embryos have Turner Syndrome and 99 percent of these miscarry, usually in the first trimester.
“Because this diagnosis deals with your genes, there is no cure, per se,” the doctor said.
Ward feels fortunate the disease has not appeared to affect Grace’s heart or kidneys.
“Those are the main life-threatening conditions,” Ward said. “She just has short stature.”
Dr. Keefe put Grace on growth hormone shots. They’re working.
According to the height chart on Grace’s bedroom wall, she’s grown 8.5 inches since her diagnosis. She measures in at 4 feet, 6 inches tall these days.
“She feels fantastic about it,” Ward said. “I just want her to be happy and comfortable with where she’s at. She’s no longer the shortest girl in her class.”
Grace has been working with a speech therapist and wears hearing aids in both ears.
“She absolutely loves them,” Ward said. “Her ear doctor said he’s never seen anybody so happy to get hearing aids.”
Despite the difficulties, Grace has maintained her positivity.
“She’s always had a really great attitude,” Ward said. “Even taking the shots has never been a problem. Grace is a princess. She has a big heart.”
Grace loves art and attends art classes at Kendall College of Art and Design in downtown Grand Rapids.
“She’s into everything to do with drawing, sketching, painting,” Ward said. “She draws fashion.”
Grace has some difficulty picking up on social cues and suffers from a non-verbal learning disorder typical of people who have Turner Syndrome.
Still, the family feels fortunate.
“She struggles, but it could be a lot worse,” Ward said. “For having Turner Syndrome, she was very blessed and doesn’t suffer from a lot of the more serious aspects. A lot of people need heart surgery right when they’re born. Most end in miscarriage. Only 2 percent survive.”
Still, there’s one common Turner Syndrome complication that breaks the family’s heart. Because of her chromosome condition, Grace will likely be infertile. It’s something she’s thinking about, even now.
Even though most kids her age have packed them away, Grace still loves to play with her dolls. She wants to someday give birth to a little girl with blonde hair and blue eyes who looks just like her.
“That’s the heartbreaking part of it,” Ward said. “I can tell she’s struggling with it. Turner girls are usually born with no eggs. …I talked to her about other ways to have families.”
Grace visits Dr. Keefe’s office twice a year.
“Dr. Keefe set her up to get bone scans,” Ward said. “Grace will not go through puberty. She started a hormone patch to push her through puberty. …She’s not developing like girls her age. Her niece is a year younger and wears a bra and is starting to develop. She’s like, ‘What about me?’”
Still, Grace is encouraged by the new adventures her height brings.
“Every summer we’d go to the carnival and Averie would be able to go on all the rides because she met the height requirements,” Ward said. “Grace would look for her tallest shoes. They came out with flip-flops that were like platforms. Last summer she was able to go for the first time.”
Then, last spring, the family visited Disney World.
“That was great for her,” Ward said. “She was thrilled to be able to go on rides and not have anybody say, ‘You’re too short.’”
Dr. Keefe said she hopes the ride ahead is a smooth one for Grace.
“Grace is doing great,” she said. “She is responding well to growth hormone and we have been moving forward with hormonal therapy.”