My Baby’s Rare Disorder Makes Every Breath a Battle and Leaves Her Choking

Soon after baby Kinley entered the world, her parents sensed that something was seriously wrong. Whenever the newborn cried, her neck would suddenly swell and take on a purple hue.

Her mother, Cristen Gluch, had only just begun to hold her daughter when doctors quickly took the baby away for an urgent examination.

‘I was in shock,’ she said. ‘One minute I had this beautiful healthy baby, and the next something was terribly wrong.’

What made the situation even more unsettling was that Kinley’s vital signs appeared normal. At first, doctors could not explain why crying triggered such a dramatic reaction in her body.

By the time Kinley was a month old, the swelling in her neck still had not gone away. Her pediatrician, concerned that it was not improving, referred the family to a dermatologist.

The dermatologist was troubled by what they observed and directed the family to an interventional radiologist. Further testing revealed that Kinley had extensive venous malformations — rare clusters of abnormally developed veins that can lead to pain, blood clots or tissue damage. The condition affects an estimated one to two in every 10,000 people.

Many venous malformations are considered low-flow, meaning blood moves through them slowly. Kinley’s case, however, was high-flow, with blood rushing through vessels in her neck toward her jugular vein — a far more dangerous situation.

Doctors warned that the condition could put severe pressure on her heart and blood vessels, raising the risk of high-output cardiac failure, bleeding or even rupture of the malformed vessel.

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.

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.’

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.

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. 

‘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.

‘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.’