Deep Vein Thrombosis: Luka’s Story
Patient Story Highlights
- A toddler’s persistent limping mystified his parents, as there was no obvious injury.
- The child was ultimately diagnosed with deep vein thrombosis (DVT) when an MRI showed a blood clot in the deep veins of his right leg.
- Because of the patient’s unique case, his parents’ quest for a higher level of subspecialty care led them to Neil Goldenberg, M.D, and to the Thrombosis program at Johns Hopkins All Children’s Hospital.
Luka’s limping didn’t make sense.
The 2-year-old kept favoring his right leg, and his mom and dad, Emanuelle and Ivica, were at a loss as to why.
The behavior first became apparent about two weeks after the family had returned from a trip to Brazil, where Emanuelle is from, to their home in Chicago.
Luka had no obvious injury. What could be the problem?
“As the days progressed, the limping persisted, and even got worse,” Emanuelle says. “We thought, ‘This is not normal.’”
His parents took him to his family doctor for an evaluation, but his doctor said everything seemed fine. Blood tests were ordered. They came back normal.
Could Luka have some sort of autoimmune condition — perhaps something such as juvenile arthritis? His parents wanted to leave no stone unturned. A rheumatologist examined the little boy and found no evidence of a joint condition.
Meanwhile, Luka’s leg pain was getting worse.
“We got to the point where Luka was not able to get out of bed anymore,” Emanuelle says. “He could not bear weight on it. He actually started crawling.”
It was frightening and confounding for Luka’s parents, both established physicians themselves, who were accustomed to navigating medical conundrums and finding solutions for their patients.
They would have to look deeper to find answers for their son.
Revealing Scan
Upon the recommendation of his doctor, Luka received an MRI scan, which yielded a surprising explanation for his limp: a blood clot in the deep veins of his right leg.
“No doctor we had seen thought it could be a blood clot, because kids usually don’t clot,” Emanuelle says, “especially if you don’t have an underlying medical condition.”
While thrombosis is less common among children than adults, pediatric cases are on the rise.
“We are diagnosing more and more children with blood clots in the deep veins, known as deep vein thrombosis or DVT,” says pediatric hematologist Neil Goldenberg, M.D., Ph.D., a thrombosis expert at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. “We have seen a 200% increase in the U.S. in the last two decades.”
Of all pediatric thrombosis cases, the vast majority of DVT are classified as “provoked,” meaning there is a clear cause for the clot, such as a recent surgery, hospitalization, or injury. Less than 5% of thrombosis cases in children are classified as “unprovoked,” meaning that no triggering factor or underlying illness was identified.
If a blood clot in the deep veins of the leg is left untreated, it can travel to the lungs — a life-threatening condition known as pulmonary embolism (PE).
After the MRI scan, Luka was admitted to a children’s hospital in his hometown to begin receiving “blood thinners” (more accurately known as anti-clotting medication or anticoagulants) to treat his thrombosis.
After a few days, Luka would go home, feeling better, but with a challenging treatment plan to prevent further clotting — one that included injections twice a day.
Days, weeks, months went by, with each parent dutifully taking turns giving their toddler the injections.
“Giving your child two shots a day is quite something,” Emanuelle says. “I get tears in my eyes thinking about it. It was heartbreaking. He was so small.”
With limited choices available for Luka, his parents began to seek a higher level of subspecialty care. They wanted deeper insight into their child’s thrombosis, as well as an opportunity to consider different treatment options.
Respected Thrombosis Program
The parents’ quest led them to Goldenberg, and to the Pediatric Thrombosis Program at Johns Hopkins All Children’s.
The team is composed of internationally recognized leaders in the prevention, diagnosis and treatment of pediatric thrombosis, with robust participation in research, including clinical trials, to advance the care of these children.
The hospital was recently designated a Venous Thromboembolism (VTE, meaning DVT and PE) Center of Excellence by the National Blood Clot Alliance (NBCA) — the very first children’s hospital in the nation to receive the distinction.
For Luka’s care, Goldenberg began collaborating with the family and the clinical team in Chicago, first with video calls and eventually, with in-person visits when the family was able to travel to the Johns Hopkins All Children’s in St. Petersburg.
Beyond the high standard of care, Goldenberg’s passion, knowledge and decades of experience specifically in Luka’s condition allowed for a more nuanced approach to their son’s treatment, with more options than they had experienced before.
“We appreciated not only his knowledge, but his open-mindedness to what our preferences might be,” says Ivica, “and for the understanding that there were many possibilities that could be applied to our unique situation.”
Goldenberg, also Perry Family Professor of Clinical and Translational Research and professor of Pediatrics and Medicine in Division of Hematology at the Johns Hopkins School of Medicine, provided an option to move Luka from the twice-daily injections to an oral medication and helped to shape a treatment plan to manage his thrombosis for now and into the future.
“It made all the difference,” Emanuelle says. “I remember he asked, ‘What does Luka like to do?’ No doctor had ever asked us what our child likes to do before.”
Luka’s Progress
Six years have passed since Luka’s thrombosis diagnosis.
As the child’s life and health have evolved, so has his treatment. Over time, Luka was able to move to a lower dose of anti-coagulant medication, and more recently, to come off the medication completely.
“Luka is doing extremely well,” Goldenberg says. “We had to carefully weigh the risks and benefits of staying on anti-clotting medication indefinitely with a boy who wants to engage in things like ice hockey. These are important decisions. Being on anti-clotting medication is not benign, as there is a risk of bleeding.”
Luka and his family make annual visits to the Thrombosis Clinic in St. Petersburg. He’ll continue to receive ultrasounds and will be monitored closely.
If he develops another DVT, he will need to resume the anti-clotting medication.
There is also a prevention plan for higher-risk situations: If he has a long flight planned, a severe infection, an injury, or surgical procedure that keeps him immobilized, he will resume low-dose anti-clotting medication briefly, until those risk factors for thrombosis are resolved or have elapsed.
Today, at age 8, Luka is playing ice hockey, thriving academically, and enjoying a busy life with his twin, Rafael, and his younger twin brothers, Marko and Daniel.
The best thrombosis care for an active child like Luka strikes just the right balance between keeping him safe from blood clots and enabling him to live his best life — and to shine.
Luka’s Thrombosis Expert:
Neil Goldenberg, MD PhD
- Associate Dean for Research, Johns Hopkins All Children's Hospital
Expertise: Pediatric Hematology Oncology
Primary Location: Johns Hopkins All Children's Outpatient Care, St. Petersburg, Saint Petersburg, FL
