By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.
Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.
The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.
Finding another treatment alternative, finding hope
Living in Indiana, Erin Pitt, Alexis’ mother, had faithfully driven Alexis one hour every few weeks to the closest children’s hospital for sclerotherapy. The results of the therapy were not progressing well, and at one point, Alexis even developed a hole in her cheek from the chemical injections.
Alexis’ case of venous malformations was so severe that her airway was being compressed which caused her to have a chronic cough, as well as trouble breathing, eating and drinking. Alexis often choked on her food and had to drink through a straw. The malformation in her right cheek was putting pressure on her teeth and making them grow at an angle, further complicating her ability to eat and swallow. Alexis needed another answer aside from the sclerotherapy that was not working and further irritating the issue.
Searching for alternatives and hope, Pitt’s aunt shared a Facebook post about a glue embolization procedure that was being pioneered by Dr. Jonathan Perkins, clinical chief of vascular anomalies at Seattle Children’s Hospital. In the procedure, Perkins injects a medical-grade super glue into the veins that are targeted for removal. With the aid of a low-dose CT scan, a 3-D image of the malformation is made and reviewed by the surgical team prior to operating.
“Due to the complexity of Alexis’ malformations, this is a case we wouldn’t have attempted without the glue embolization technique,” Perkins said.
Pitt immediately researched Seattle Children’s as an option despite the fact the hospital was on the other side of the country.
“I read up as much as I could about Dr. Perkins and I was impressed,” Pitt said. “I was very nervous, but also excited to have another option, to have hope.”
Reaching out with hope for a cure
Pitt contacted Seattle Children’s and sent six years of medical records to Perkins. Perkins carefully reviewed the complex case and determined his glue embolization technique may be able to help Alexis and provide a permanent solution to her problem.
A hopeful Pitt and her daughter boarded a flight for Seattle in April of 2017. Alexis was excited just to be on an airplane for the first time.
“She wasn’t scared or nervous,” Pitt said. “She was smiling right up until the surgery. The people at Seattle Children’s were so nice, they made Alexis feel at ease.”
Pitt was not as calm as her daughter.
“It had taken me a long time to be cautiously optimistic because of her history,” she said. “But I was excited about the procedure and the possibility that it may be the answer.”
A new life for Alexis
The surgery took Perkins,and their team more than 10 hours and they successfully removed the malformations in Alexis’s throat using the glue embolization technique.
Remarkably, only 2 1/2 weeks after the surgery, Alexis was able to swim the entire length of her pool back home in Indiana. It was a feat that was unimaginable just weeks earlier.
“Did you see me?” she kept asking her mother.
“I have a hard time not tearing up talking about it,” said Pitt.
Alexis has gone from a girl who never went more than four weeks without a sclerotherapy procedure to an energetic and active young lady who can sleep without snoring, eat without choking and drink from a cup without a straw. She will need one more procedure on her lip, tongue and cheek which Perkins plans to do in about six months. After that, Alexis will likely need no additional surgeries for the vascular anomalies.
When asked about how she feels about the situation, Pitt says, “I can’t think of a word to describe it. It’s the best thing to ever happen to me and Alexis in her life. I will be forever grateful for the Seattle Children’s surgical team.”
Alexis proudly shows off the scar on her throat. She likes pointing it out to people. Pitt taught her never to be self conscious of it, especially as she returned to school.
The new normal
“As a mom, you always want the best for your kids, and we found the best,” said Pitt. “Alexis grew up with her normal being a trip to the hospital every few weeks for the first seven years of her life. She didn’t know anything different. For her not to have to go through that anymore is something I’ve always dreamed of.”
When asked how they made it through those difficult years, Pitt simply said, “I never gave up hope that a treatment would come along that could help Alexis. She’s a fighter that has endured a lot at her age and we’ve been blessed with the support of many friends and family.”
She found that treatment 2,200 miles from home, all because of a Facebook message and a strong sense of optimism that her daughter could be helped.
“Above all, it’s important to remember that no matter how challenging things may seem, don’t ever give up hope,” Pitt said.
- Vascular Anomalies