Willow the Warrior

Willow’s parents had been trying to get pregnant for a very long time and when it finally happened, they were delighted. Their delight was tempered a bit when, at 20 weeks, mom Alysha went in for an anatomy scan and it was discovered that Willow might have craniosynostosis. Alysha’s doctor performed monthly ultrasounds and then an MRI, and it looked like Willow was fine…for a while.

After thirty hours of labor, things stopped progressing and Alysha had an emergency c-section. Baby Willow was taken into another room immediately and the nurses gestured for her dad to follow them. When he returned, Alysha asked him, “Does she have it?” He replied, “Yes,” and they knew.

On Willow’s second day, she had a CT scan in a hospital in Toledo (where the family lives). The doctors there noted that her eyes were set far apart, she had an indent in her nose, and the back of her head was very flat. It was recommended that they see a geneticist and they were connected with Dr. Bartholomew, a Nationwide Children’s Hospital-based doctor who occasionally saw patients in Toledo. Alysha says, “Dr. Bartholomew is the puzzle piece for everything having to do with our daughter! He whittled it down to three possible things, one being craniofrontonasal dysplasia (a very rare disorder characterized by facial and body asymmetry), and after ordering blood work he suggested that we go to Nationwide Children’s for a low-dose CT scan. He seemed so confident about her diagnosis and we trust him so much.”

Two weeks later the family was in Columbus, and it was discovered that her cranial sutures (bones in the skull) were closed. Dr. Pearson (Director of the Center for Complex Craniofacial Disorders at Nationwide Children’s) recommended distraction surgery, which involves opening up the sutures and placing little plates on either side, set with pins that stick out of the head and need to be turned by the parents daily. Willow’s mom makes it sound easy: “We had to turn the pins four times in 23 days. It was amazing, the difference. She was only nine months old at surgery and had pins removed right before her first birthday. This past August she had cranial vault reconstruction (reshaping of the cranial bones) to give her brain even more space to grow.”

While Alysha thinks the worst part was the swelling because Willow looked so uncomfortable, she was clearly on the road to recovery. “Dr. Pearson felt comfortable with us communicating on the phone and via email with pictures, so we only had to go back to Columbus once, and we appreciated that so much. As long as there’s no concern for intracranial pressure and her brain keeps growing, they’ll be happy…and so will we!”

Willow’s parents are thankful for the experience they had at Nationwide Children’s. “It felt like we had been so misunderstood until we arrived in Columbus. We were so happy to get answers and the doctors were great about explaining everything. They’re honest but tender, erring on the side of ‘positive honesty.’ Everyone was wonderful, from the doctors to the nurses to the people who cleaned our room. They always asked how we were doing, and I know they were being genuine. Everyone at Nationwide Children’s understands every individual parents’ needs and communicates so well to help everything go as well as possible. I felt heard and seen.

Willow turned two in November, and she is making waves! Her mom says, “She is so spunky and hilarious. I don’t know how someone so little can have such a big personality. She puts a smile on everyone’s face and is the light of our lives.” Willow loves dancing, making music, drawing, and painting. And unicorns. And cows. Alysha adds, laughing, “But she really loves pizza!”

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Willow’s parents had been trying to get pregnant for a very long time and when it finally happened, they were delighted. Their delight was tempered a bit when, at 20 weeks, mom Alysha went in for an anatomy scan and it was discovered that Willow might have craniosynostosis. Alysha’s doctor performed monthly ultrasounds and then an MRI, and it looked like Willow was fine…for a while.

After thirty hours of labor, things stopped progressing and Alysha had an emergency c-section. Baby Willow was taken into another room immediately and the nurses gestured for her dad to follow them. When he returned, Alysha asked him, “Does she have it?” He replied, “Yes,” and they knew.

On Willow’s second day, she had a CT scan in a hospital in Toledo (where the family lives). The doctors there noted that her eyes were set far apart, she had an indent in her nose, and the back of her head was very flat. It was recommended that they see a geneticist and they were connected with Dr. Bartholomew, a Nationwide Children’s Hospital-based doctor who occasionally saw patients in Toledo. Alysha says, “Dr. Bartholomew is the puzzle piece for everything having to do with our daughter! He whittled it down to three possible things, one being craniofrontonasal dysplasia (a very rare disorder characterized by facial and body asymmetry), and after ordering blood work he suggested that we go to Nationwide Children’s for a low-dose CT scan. He seemed so confident about her diagnosis and we trust him so much.”

Two weeks later the family was in Columbus, and it was discovered that her cranial sutures (bones in the skull) were closed. Dr. Pearson (Director of the Center for Complex Craniofacial Disorders at Nationwide Children’s) recommended distraction surgery, which involves opening up the sutures and placing little plates on either side, set with pins that stick out of the head and need to be turned by the parents daily. Willow’s mom makes it sound easy: “We had to turn the pins four times in 23 days. It was amazing, the difference. She was only nine months old at surgery and had pins removed right before her first birthday. This past August she had cranial vault reconstruction (reshaping of the cranial bones) to give her brain even more space to grow.”

While Alysha thinks the worst part was the swelling because Willow looked so uncomfortable, she was clearly on the road to recovery. “Dr. Pearson felt comfortable with us communicating on the phone and via email with pictures, so we only had to go back to Columbus once, and we appreciated that so much. As long as there’s no concern for intracranial pressure and her brain keeps growing, they’ll be happy…and so will we!”

Willow’s parents are thankful for the experience they had at Nationwide Children’s. “It felt like we had been so misunderstood until we arrived in Columbus. We were so happy to get answers and the doctors were great about explaining everything. They’re honest but tender, erring on the side of ‘positive honesty.’ Everyone was wonderful, from the doctors to the nurses to the people who cleaned our room. They always asked how we were doing, and I know they were being genuine. Everyone at Nationwide Children’s understands every individual parents’ needs and communicates so well to help everything go as well as possible. I felt heard and seen.

Willow turned two in November, and she is making waves! Her mom says, “She is so spunky and hilarious. I don’t know how someone so little can have such a big personality. She puts a smile on everyone’s face and is the light of our lives.” Willow loves dancing, making music, drawing, and painting. And unicorns. And cows. Alysha adds, laughing, “But she really loves pizza!”

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