Remembering Aqilah (Singapore)
A family turns pain into purpose to spotlight the importance of family medical history
The Salleh family has been living under the shadow of blood clots for years.
The Singaporean family is comprised of nine adult children, and seven of them have had blood clots, including deep vein thrombosis (DVT) or pulmonary embolism (PE).
Patemah Salleh was the first of the siblings to be diagnosed with a DVT in 1994 and subsequently with a PE in 1999. Over the last 25 years, six of her siblings, including her brother Haji, have all had blood clots in the leg (DVT), with hallmark symptoms including leg pain and swelling.
Despite extensive genetic testing, including for Factor V Leiden and prothrombin mutations, no genetic predisposition has been identified in the family.
Most of the siblings have continued to live a healthy life despite their diagnosis due to daily anticoagulants and regular care with a hematologist.
However, in December 2021, the family’s blood clot story took a devastating and emotional turn. Haji, who is one of the nine siblings, experienced a tremendous loss when his daughter died unexpectedly from a pulmonary embolism at just 24 years old.
This is her story.
A young life and a promising future
His daughter’s name is Nurul Aqilah Binte Haji Roslan, but to her family she was Aqilah.
There are many adjectives to describe Aqilah—bubbly, brave, lighthearted. At the young age of 24, she was on the path to an exciting and successful future.
She was strong, active and tough, according to her loved ones, and she enjoyed vigorous activities. In high school, Aqilah joined the National Police Cadet Corps that conducted survival training and intense outdoor activities, as well as provided community support.
She was also an expert in traditional Malay martial arts called Silat. A dedicated athlete, she was even selected to participate in exclusive Silat performances and competitions.
“She was the braver and tougher one between the two of us,” said her sister Nurul Nabilah, who is four years younger.
Aqilah and Nurul Nabilah, along with their parents Haji and Azizah, have always been an extremely tight-knit family. They lived together and Aqilah was completing her Diploma in Nursing.
“Aqilah was someone who would inspire others to try something new,” Nurul Nabilah said. “She was always in good shape. She was passionate about exercising and her Silat training.”
A routine surgery with devastating consequences
It was during her exercise training that Aqilah suffered an anterior cruciate ligament (ACL) tear on her left knee. She had two choices: she could have surgery or wait and let it heal on its own.
She considered the options, and Aqilah ultimately decided to move forward with surgery in order to heal faster and get back to her training routine—which she loved.
In November 2021, Aqilah underwent a routine ACL orthopedic surgery at the hospital. She recovered at home under the care of her family. Haji, her father, was retired and was happy to help care for his daughter during this time.
One month after the surgery, her recovery seemed to be going smoothly for the most part. Aqilah was up and moving around with assistance from a walker and had even recently joined a family wedding gathering.
And yet, Aqilah had also been expressing that she felt pain at the surgical site on her knee. Her mother Azizah, who works as a nurse, is well aware of how a classical DVT forms if an individual’s leg looks dark and shiny. However, Aqilah did not show any of those symptoms.
She was concerned but encouraged Aqilah to continue to ice and compress the area. They did not see any swelling, so the family thought that any pain was due to routine after-effects from surgery.
“It all happened in the blink of an eye”
On the morning of December 7, 2021, approximately one month after the surgery, the family was awake early.
Nurul Nabilah remembers that Aqilah was acting normal that morning. She did morning prayers with the family and later she was talking and joking as usual.
Aqilah went to her room to lay down in the bed and rest. Nurul Nabilah laid down in the bed next to her.
“I’m lying in the bed next to my sister, and suddenly I hear a thud on the floor. I see that she has rolled off the bed,” Nurul Nabilah said. “I turned her over and she was having difficulty breathing. I called in my mother and we immediately called an ambulance.”
Aqilah was rushed to the hospital. Despite efforts to resuscitate her, Aqilah died on the way to the hospital.
“It all happened in the blink of an eye. She was acting normal, and then in the next few minutes…we lost her. It was a shock to all of us,” Nurul Nabilah said.
The family would soon learn that Aqilah’s death was the result of a devastating blood clot that had travelled from her leg to her lungs, a condition known as venous thromboembolism (VTE).
The silent threat of a blood clot
After Aqilah’s death, the family began to consider how their family history may have affected Aqilah’s risk for getting a blood clot following her orthopedic surgery.
“It was a very hard time,” shared Azizah, wiping a tear from her cheek. “There are a lot of regrets. The family history did not cross our minds. I wish we had considered it.”
Due to COVID-19 pandemic restrictions, there were limits to how many people could attend Aqilah’s memorial service. Azizah recalled that, nonetheless, hundreds of people in the community shared with the family how much Aqilah meant to them.
In the wake of Aqilah’s death, the family have become advocates for raising awareness about the risks of blood clots and the importance of learning about and sharing family health history with healthcare providers.
Despite her young age, Aqilah had many of the primary risk factors for getting a blood clot: hospitalization, surgery and family history.
Research shows that 60% of VTE cases occurring during or after hospitalization. Patients are more likely to develop blood clots if they have decreased mobility due to bedrest or recovery. Being confined to a bed for an extended period after surgery or any serious illness increases a person’s susceptibility for blood clots. When legs are in the sitting position for long periods, the flow of venous blood slows and blood can pool in the legs.
The family highlights how important it is to share your medical and family history with your healthcare professional, even if you do not think it is significant.
“Don’t assume that your doctor knows your family history,” said Aqilah’s father Haji. “Always tell your doctor or nurse about any history of blood clots in your family. It could save your life or the life of someone you love.”
Lai Heng Lee, M.D., is a physician in Singapore and member of the World Thrombosis Day Steering Committee. She is the treating physician for the family, including Haji and his sister Patemah.
“If her family history had been mentioned, the surgeon would have likely called me or another hematologist to inquire about the family history and thromboprophylaxis,” shared Lee. “Even if you have no family history, people need to be aware of the risk. Talk to your doctor about it. It is about empowering our patients to be more proactive about their health.”
A catalyst for change
Today, Aqilah’s family remains committed to spreading awareness about the dangers of blood clots and the importance of proactive health communication. They hope that by sharing their story, they can prevent other families from experiencing the same heartbreak.
“Our family history did not cross our mind when our daughter had surgery,” Haji said. “It was not brought up because we did not highlight it. Our hope is that Aqilah’s story is a catalyst for change.”
The family’s message is clear: always be aware of your health history and never underestimate the silent threat of blood clots.
Through their efforts, they hope to save lives and honor Aqilah’s memory.
“We miss her so much. If she was with us today, she would want to help others,” Haji said. “Aqilah was a leader. She would want others to know about this and share information. If we can help just one person by sharing what we’ve learned, then her death will not have been in vain.”
Click here to download a list of questions to ask your doctor about blood clot risks. To learn more about blood clots and advocating for your health, visit www.worldthrombosisday.org.
