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Patients of courage
When it comes to giving back, age is no boundary, as teenagers Jacob DeGroot and Morgan Glodowski are showing. Both have been through serious medical issues and now serve as inspiration for kids and adults alike.

By CATHY BREITENBUCHER

 November 2014

Facing a rare diagnosis

Morgan Glodowski, 18, is a college freshman thinking about a career in physical therapy, where she would work with young children.

That’s maybe not surprising, since Morgan spent much of her own childhood around hospitals and clinics.

Morgan was born with a large, tumor-like birthmark on her face known as a hemangioma, which comes from abnormalities of the blood vessels. A lifetime of surgeries and medications have cleared up her complexion.

The very year Morgan was born (1996), doctors around the world began to realize that such abnormalities were related to other malformations in the brain, heart and eyes. Morgan was diagnosed with a syndrome collectively now known by the acronym "PHACE."

The syndrome is rare, with just 12 to 20 children diagnosed in the U.S. each year. Its cause is unknown, so Morgan feels an obligation to help doctors understand it. She has participated in a nationwide study and genetic registry based at Children’s Hospital of Wisconsin and spoke last summer at the National PHACE Family Conference in Milwaukee.

None of Morgan’s four younger brothers has PHACE syndrome. However, the Glodowskis lost infant daughters to twin-to-twin transfusion syndrome, which also is related to blood vessel abnormalities.

Dr. Beth Ann Drolet, medical director of the Birthmarks and Vascular Anomalies Center based at Children’s, has been Morgan’s dermatologist for years.

"I’ve loved working with Dr. Drolet, and it’s awesome to see how much progress she’s making in PHACE," says Morgan. "I want to help them out because they’ve helped me so much."

Morgan’s mom and dad, Janet and David Glodowski, were anxious, first-time parents when their daughter was born. Everything seemed fine at first.

"The next morning, they came and said, ‘She’s going to have a birthmark like (Soviet President Mikhail) Gorbachev, and she has a heart murmur,’" recalls Janet. "It blew us away."

Morgan was seen by a dermatologist and heart specialist in addition to a pediatrician. "We’d have three or four appointments a week," says Janet.

A month later, Morgan underwent heart surgery to address a crimped area at the aorta. When she was 1 year old and again at age 2, she had operations on muscles in her eyes because the birthmark was pushing her eyes out of alignment.

"Back then, nobody had a clue what her path would be," says Janet. "We handed her over to fix her heart, and then she wasn’t seeing and wasn’t developing. It was pretty devastating."

The Glodowskis live in Amherst, near Stevens Point, and took Morgan to doctors in that area and in Madison before finding the specialists at Children’s Hospital.

"They would have kids with birthmarks and kids with heart problems but right at that time, they started to make the connections," says Janet. "As young parents, we had to trust that even though it wasn’t an exact science, we had to trust these guys. We knew we had to do something."

As a baby and toddler, Morgan’s bright red birthmark covered the left half of her forehead and left temple, and extended down her nose and upper lip, and her left arm and hand. Her parents refused to shield her from any attention.

"My mom took me out wherever she was going and faced the questions," says Morgan. "I just learned from her that people might look, but they’re not going to do anything unless I let it affect me."

Steroids and several laser surgeries halted the growth of the birthmark, and by the time Morgan started school it was far less noticeable.

"I’m from a really small school," notes Morgan, "and after the first couple years, the questions disappeared because everybody knew."

Some PHACE patients have brain abnormalities or suffer strokes, but that is not the case with Morgan. She was delayed in learning to crawl and walk, and is legally blind in her left eye. As the years passed, though, she became very active in sports, including swimming, running and soccer, and learned to play the piano and drive.

"I raised her like there was nothing wrong with her. We never stressed that she was different," remembers Janet. "Kids would be curious, and as she got older she would say ‘birthmark’ and she’d be done with the conversation. To us, she was just Morgan."

Now a student at UW-La Crosse, Morgan anticipates only every-other-year checkups of her eyes and heart. She takes no medications and needs no special care for her skin.

"They haven’t noticed any changes," says Morgan. "They will keep me in the study, but their predictions are I’ll have a healthy life."

Speaking at the PHACE conference was a way for Morgan to provide hope to families dealing with their own children’s diagnoses, Janet says with pride.

"I tell her, ‘you have been such an example for the community without even realizing what you have done,’" she adds. "It’s because of how she turned out, her personality, that she makes everybody feel comfortable and welcomed."

Promoting skier safety

Jacob DeGroot, 16, likes his English classes at Kaukauna High School and absolutely loves playing volleyball. He doesn’t take everyday activities such as school and sports for granted. He lives with the results of a traumatic brain injury he sustained in a downhill skiing accident 2½ years ago.

Both Jacob and his mom hope that no family has to go through what they did. He stars in a three-minute safety video that has gone out to ski resorts nationally, and he speaks to local ski clubs. The message is simple: Wear a helmet.

"This is Jacob’s opportunity to give back to the community," says his mom, Patti.

The winter of 2012 was a mild one, leading to icy conditions on many Wisconsin ski hills. When Jacob’s school ski club headed for Nordic Mountain in Waushara County on Jan. 12, a couple inches of fresh snow covered the slopes. Late in the afternoon on Nordy’s Narrows – a black diamond run – a group of kids ahead of Jacob fell. When he swerved to avoid them, he tumbled over a ravine into a wooded area, flipped, and struck a tree head-first.

The ski patrol on the hill responded immediately. When the first responder saw blood coming from inside Jacob’s ear, he suspected a brain injury and called for a helicopter evacuation. Initially, Jacob was lucid and able to tell the ski patrol his name. But then he lost consciousness.

By the time Jacob had been moved to the bottom of the hill, an ambulance was waiting and he was put on life support during the short drive to the helipad. Every minute counted.

"One of the chaperones called me and said he’d been in an accident," Patti recalls. Then a flight nurse asked about any allergies or other conditions Jacob might have, and quickly added, "We have to go."

Patti arrived at Theda Clark Medical Center in Neenah a few minutes before the helicopter. Once there, Jacob underwent a CT scan, which confirmed bleeding in the brain. Dr. Karl Greene, a neurosurgeon, determined that Jacob’s brain was swelling quickly. The best way to relieve the swelling would be to temporarily remove about one-third of his skull.

"He said, ‘look, your son is in critical condition. If I don’t get in there right now and perform brain surgery, he’s going to die,’" Patti recalls. "I just grabbed his hands and said, ‘God bless your hands. Go save my son.’"

The operation lasted 2 1/2 hours, leaving an incision that began at the top of Jacob’s head, stretching down the back and over to above his left ear. Jacob was flown to Children’s Hospital of Wisconsin for further treatment. He spent seven days in the pediatric ICU, including five days on life support, and seven more in the neuro rehabilitation unit. "That’s the place of miracles for me," says Patti.

Jacob remembers very little about the accident and the care he received at Children’s – what stands out to him is how the staff interacted with him. "All the nurses were really, really nice to me. They didn’t talk about (the injury) too much," he says. "They treated me like a kid, and I kind of liked that."

Within hours of Jacob’s accident, Patti was texting friends to urge the use of helmets for skiing. She even texted the frightening photos of Jacob in his hospital bed with his head shaved and stitched up. "I wasn’t trying to exploit my son, it was trying to get the message out there about the importance of wearing a helmet," says Patti. "Once I did it, we had this outpouring of responses of thankfulness."

The use of helmets for skiers and snowboarders has almost tripled over the past 10 years, but only about two-thirds of kids under 14 wear a helmet for downhill skiing, according to national industry studies. (Nordic Mountain now includes free helmets with its ski rentals.)

Experts have told the DeGroots that even if Jacob had been wearing a helmet that day, his injuries still would have been serious. "I never knew what a traumatic brain injury was until Jacob went through it," says Patti.

Months of therapy followed after Jacob’s discharge from Children’s Hospital. About 10 weeks after the accident, the skull section that had been removed was put back into place. He has attended medical conferences with Greene where other doctors could learn about the life-saving care he received.

Jacob has been released from speech therapy at school and instead uses an app on his phone to practice his word-recall skills. His grades are good – in fact, he’s set his sights on a 3.0 GPA so his car insurance will cost less. He’s thinking about college in a couple years, hoping to follow in the footsteps of his four older siblings.

He used to enjoy wrestling and playing football, but the days of contact sports are behind him. He has, however, been medically cleared to play competitive volleyball.

"Jacob is living proof of what can happen if you don’t wear your helmet. I want to get that message out there, and that you shouldn’t take life for granted," says Patti. "For us, sharing the story is therapeutic."







 


This story ran in the November 2014 issue of: