When faced with a sick child, every parent in the world wants the same thing—the best care possible. Often, all it takes is a quick visit with the local health care provider. Occasionally, it means a trip to the local hospital or short stay at an academic medical center. In rare cases, obtaining the best care requires an extraordinary effort.
A mother finds herself researching the world’s best pediatric neurosurgeons. An uncle turns to YouTube to learn more about brain tumors. Physicians on opposite corners of the globe find ways to communicate and collaborate. And a family boards an air ambulance, embarking on a 7,000-mile journey, anticipating a marathon neurosurgery for their child and hoping for the best.
In December 2013, Mohammad and Hend Al Ansari, from Dubai, United Arab Emirates, found themselves in that rare group of parents.
In late October, the Al Ansari’s noticed that their healthy four-year-old son started routinely vomiting in the mornings before school. Other worrisome symptoms also appeared. Khalid lost some mobility on the right side of his body. He complained of headaches and feeling tired.
Doctors prescribed anti-nausea medicine, which didn’t work, yet Khalid’s blood work appeared normal. However, when a doctor asked Khalid to perform basic neurological tasks, he realized the boy might have a neurological condition and referred the family to another hospital for a CT scan.
“After the scan, they told us about the tumor on the back of his head. We were shocked,” says Mohammad.
The tumor measured 6 cm, which was very large, but the size doesn’t fully capture the problem, says Alan Cohen, MD, a neurosurgeon in the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and neurosurgeon-in-chief at Boston Children’s Hospital. The life-threatening tumor was shoehorned into a very small location—the posterior fossa of the skull—and caused an enormous amount of intracranial pressure and hydrocephalus (backup of water on the brain).
Khalid required a very risky surgery to remove the tumor. “Doctors in Dubai told us he might not be able to walk, see or talk after surgery,” recalls Mohammad.
When the Al Ansari’s asked the local surgeon how many similar procedures he had he had performed and found out his experience was limited to three patients, they decided to search for a physician with more expertise.
Hospital staff and the United Arab Emirates Embassy Health Section, which arranged for the surgery, recommended a few academic medical centers.
The family researched both options. “Boston Children’s website was more user-friendly in terms of brain tumor cases. The links to YouTube helped us understand what would happen. We felt much more comfortable choosing Boston Children’s,” says Hamad Almarzouqi, Khalid’s uncle.
The Boston Children’s International Health Services staff, Cohen and the Dubai medical team worked together to coordinate Khalid’s care. Doctors in Dubai shared Khalid’s pre-surgical MRI and CT images with Cohen, and the entire group of physicians discussed the case by phone and email to make sure the boy could travel safely. That meant weaning him from the cortisone that was needed to reduce the swelling in his brain and replacing the medication with a ventricular shunt for the flight.
On December 10, the family boarded an air ambulance. As the Al Ansari’s flew from Dubai to Germany to Iceland to Boston, hospital staff prepped for Khalid.
“We’re very pleased by the slightest gestures from the hospital, like the note on Khalid’s door asking male visitors to knock because there is a covered woman inside. The activities for kids—using pictures to show the surgery—are so helpful,” says Hamad.
Cohen completed the surgery in Boston Children’s intraoperative MRI, a state-of-the-art operating room equipped with an MRI scanner. “It takes some of the guesswork out of surgery by letting us distinguish tumor from brain tissue and showing any tiny bits of tumor hidden around corners in the brain,” explains Cohen. Intraoperative imaging also allowed him to confirm complete resection of the tumor during surgery.
Khalid bounced back from the seven-hour procedure, resorting to the antics of a healthy four-year-old. Within two days of the marathon surgery, he had commandeered his parents’ iPad, smiling as he played his favorite games and Skyped with family in Dubai.
A few days later, Cohen shared Khalid’s pathology results with Mohammad and Hend. Khalid’s tumor, as expected, was a benign juvenile pilocytic astrocytoma. “It’s great news. Khalid won’t require chemotherapy or radiation treatment,” says Cohen.
The neurosurgeon predicts a complete recovery for Khalid and is delighted that Khalid can complete his follow-up care in Dubai. Cohen will stay in touch by phone and email with the Dubai-based medical team, providing expertise and a second review of Khalid’s follow-up MRI exams as needed.
“We knew he was in good hands,” says Mohammad.