It wasn’t long after baby Kinley was born that her parents realized something was wrong – as the newborn’s neck suddenly swelled and turned purple as she cried.
Cristen Gluch had barely had the chance to hold her baby before doctors rushed her away to be examined.
‘I was in shock,’ she said. ‘One minute I had this beautiful healthy baby, and the next something was terribly wrong.’
Surprisingly, Kinley’s vital signs were normal and doctors had no immediate answers as to why her body reacted the way it did to her crying.
When Kinley was a month old, a pediatrician referred her to a dermatologist after noticing the swelling in her neck wasn’t resolving.
Concerned by what they saw, the dermatologist then sent the family to an interventional radiologist, who ordered tests that revealed the infant had extensive venous malformations – rare clusters of abnormally formed veins that can cause pain, blood clots, or tissue damage. Their incidence is about one to two per 10,000 people.
Most venous malformations are low-flow, with blood moving sluggishly through them. But Kinley’s was high-flow, meaning blood was racing through her neck vessels toward her jugular vein, making it far more dangerous.
This could place immense strain on her heart and blood vessels, increasing the risk of high-output cardiac failure, bleeding or rupture of the malformed vessel.
Moments after Kinley was born, her parents’ joy turned to fear when her neck suddenly swelled and turned purple as she cried for the first time
![Before her mother Cristen [pictured] could even hold her, Kinley was rushed away by doctors who knew something was wrong](https://i.dailymail.com/1s/2026/07/07/15/109778445-15941441-Before_her_mother_Cristen_pictured_could_even_hold_her_Kinley_wa-a-5_1783434937826.jpg)
Before her mother Cristen [pictured] could even hold her, Kinley was rushed away by doctors who knew something was wrong
At first, doctors believed they could manage Kinley’s condition with bleomycin sclerotherapy, a minimally invasive procedure that injects medication directly into abnormal blood vessels to shrink them.
But in 2019 during Kinley’s first treatment at just one year old, they realized they were dealing with something far more extensive than anyone had anticipated
‘I will never forget the interventional radiologist coming out of surgery looking so discouraged,’ Gluch, who lives in Utah, said. ‘He was astonished by how large and high-flowing her malformation was.’
The procedure was not the success they had hoped for. During the operation, doctors injected dye to map the malformation and what they saw stopped them in their tracks.
The growth in Kinley’s neck completely lit up and blood was flowing through it so rapidly that the medication would have traveled straight toward her heart and lungs.
The risks were too great to proceed. So doctors decided on the spot that they would treat only the smaller malformations they could safely reach, and leave the dangerous one in her neck to be monitored.
The family had no idea it was just the first in a line of nearly two dozen surgeries Kinley would endure before she turned eight.
At just one year old, Kinley underwent her first sclerotherapy procedure to treat her malformed blood vessels
During that first procedure, doctors discovered the malformation was high-flow and far more complex than anyone had realized
Two years later, when Kinley was three, she began developing blood clots inside the tangled, abnormally shaped veins that make up her venous malformation.
And because the abnormal veins were directly connected to her jugular vein and major blood vessels leading to her heart and lungs, doctors feared the consequences could be catastrophic.
A blood clot could travel to her lungs, or if the malformation were to burst, it could cause life-threatening internal bleeding.
To buy time, Kinley was placed on blood-thinning injections while her medical team consulted specialists across multiple disciplines.
Eventually, they decided the only option was an extraordinarily high-risk operation to surgically remove the large malformation from her neck.
‘The risk of her bleeding and it not being able to be stopped was significant,’ Gluch said. ‘These malformations can bleed a lot, and Kinley’s was so large and had such high-pressure blood flow running through it.’
Surgeons brought in a microvascular specialist to assist and even removed part of Kinley’s collarbone to gain access to the malformation.
‘During that eight-hour surgery, we genuinely thought we might lose her,’ Gluch said. ‘It was the most terrifying day of our lives.’
The operation was a success. Surgeons safely removed the malformation and Kinley survived with only one blood transfusion.
‘It was after that surgery that I knew our baby was going to be okay,’ Gluch said. ‘The worst was finally behind us.’
At age three, Kinley underwent an extraordinarily high-risk, eight-hour surgery to remove a large malformation from her neck. Her parents feared they might lose her
After that risky surgery, Kinley survived with only one blood transfusion—and her mother finally knew she was going to be okay
Kinley’s journey is not over, though. She continues to undergo bleomycin sclerotherapy treatments every few months to control the remaining venous malformations throughout her face, lip, neck, mouth and airway.
She also suffers from severe obstructive sleep apnea caused by malformations in her airway and wears a CPAP machine every night while she sleeps to deliver a steady stream of pressurized air.
The venous malformations that cover parts of Kinley’s face and neck are frequently mistaken for bruises, making her a target for curious stares.
Gluch acknowledged that Kinley draws a lot of attention because of them. Yet she rarely grows frustrated and simply explains to people that she has extra blood vessels.
Despite everything she has endured, Kinley, now eight, refuses to let her condition define her.
‘She doesn’t like the extra attention and just wants to get back to being a normal kid,’ Gluch said.
‘I’ve had kids ask her about her venous malformations and then tell her they think it’s her superpower. Just like everything else she has faced, it’s no big deal to her.’
Today, Kinley plays on a soccer team and dances on a dance team.
‘She might miss a practice because of surgery, but you can usually count on seeing her right back there the next day,’ her mother added.
Despite years of procedures, Kinley refuses to let her condition hold her back. She tells people she has ‘extra blood vessels’
Every night, Kinley sleeps with a CPAP machine to manage severe obstructive sleep apnoea caused by malformations in her airway. She rarely complains
The family’s attention has now shifted to a pioneering clinic in Italy, where a treatment called bleomycin electrosclerotherapy (BEST) is being offered.
While traditional bleomycin sclerotherapy has managed to shrink Kinley’s malformations and keep them in check, it’s never been able to make them disappear entirely.
Doctors have cautioned that the abnormal vessels can continue to expand over time and could worsen during puberty or other hormonal shifts. Without a better alternative, Kinley is looking at ongoing procedures for the foreseeable future.
On top of that, the bleomycin she receives has a lifetime cap. Too much exposure over the years can pose health risks. If she keeps needing treatment every few months, she’ll eventually hit that limit.
At that Italian clinic, doctors are combining the standard medication, bleomycin, with electrical pulses, a technique known as electroporation.
This process temporarily opens microscopic pores in the cell membranes of the malformed blood vessels, allowing the drug to penetrate hundreds, and potentially thousands, of times more effectively than traditional sclerotherapy alone.
BEST takes Kinley’s standard bleomycin sclerotherapy and supercharges it with electrical pulses, allowing it to reach deeper into the tangled vessels.
This enhanced absorption means doctors can achieve better results with fewer treatment sessions and lower doses of bleomycin.
Kinley’s family is heading to Italy soon for the procedure, as the Italian physician there decided that Kinley is a strong candidate.
Doctors will not guarantee a cure, but to Gluch, it’s the closest thing she’s seen for children with vascular malformations.
Kinley loves soccer, dance, and just being a kid. She’s always asking to return to practice almost immediately after procedures
Now eight, Kinley is a dedicated member of a dance team, proving that despite everything she’s been through, she’s unstoppable
‘Our biggest hope is that the malformations can be eliminated,’ Gluch said. ‘No more worries about her airway, no more blood clots, no more surgeries and anesthesia every few months, and no more bleomycin treatments.
‘We hope she can just be a normal kid and not have to worry about an upcoming surgery or someone asking why she looks bruised.’
But with that hope also comes a great deal of uncertainty.
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‘Our biggest fear is the unknown,’ Gluch said. ‘Taking a leap like this is scary. Going outside our country for medical treatment is very overwhelming.’
And the emotional and financial strain on the family has been enormous.
‘It has been a rollercoaster,’ the mother added. ‘We’ve had the highest of highs celebrating successful surgeries and milestones, and the lowest of lows wondering if Kinley was going to survive. It’s exhausting.
‘You’re constantly battling insurance, constantly getting bills in the mail, constantly going to appointments and surgeries, and constantly carrying the weight of hoping everything will work out and that you’re doing enough to get your daughter the best care possible.’
The family has health insurance, but Kinley’s care is so costly that they max out their annual limit by February.
The treatment in Italy isn’t covered, so they are facing roughly $60,000 for the surgery and hospital stay alone, in addition to airfare, housing and several weeks of recovery in Italy.
They have launched a GoFundMe to help get them there.
‘There’s a promising potential cure across the world. Of course we’re going to get her there,’ Gluch said.
If there is one person equipped to take on whatever comes next, Gluch is certain it’s her daughter.
‘She is brave, resilient, inspiring, tough and loving,’ she said. ‘She’s the strongest little girl I know.’
