18, is a college freshman thinking about a career in physical therapy,
where she would work with young children.
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.
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
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."
and dad, Janet and David Glodowski, were anxious, first-time parents
when their daughter was born. Everything seemed fine at first.
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
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."
live in Amherst, near Stevens Point, and took Morgan to doctors in
that area and in Madison before finding the specialists at Children’s
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
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
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."
several laser surgeries halted the growth of the birthmark, and by the
time Morgan started school it was far less noticeable.
a really small school," notes Morgan, "and after the first
couple years, the questions disappeared because everybody knew."
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.
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
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.
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."
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
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.
Jacob’s opportunity to give back to the community," says his
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
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.
‘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.’"
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.
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.)
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,"
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
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
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