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In the moments before he vanished through double doors leading to an operating room, Hoang Son Pham acted every bit his age. He played Nintendo games with another boy. He watched part of The Land Before Time. He held his stuffed dog, Bo.

Then, the 10-year-old boy turned to a Boston surgeon who would soon insert a tracheotomy tube into his throat, and asked a simple question with a complex answer: "Is it safe?"

From the beginning, Son Pham's shocking image has driven strangers to extraordinary acts of compassion. A small group of Canadians plucked him out of a Vietnamese orphanage, housed and cared for him in three cities and doggedly pursued treatment for the large vascular anomaly that has distorted his nose, mouth and neck. Donations totalling more than $230,000 have poured in from across the country, making treatment financially possible.

But his case - like so many others involving difficult health conditions - has also forced a dilemma upon the people who brought him here: How can you know for certain if you're doing more good than harm?

After months of medical assessments this summer, Toronto's Hospital for Sick Children decided that the best treatment course for Son Pham was to do nothing, and send him back to Vietnam.

Yet, without meeting Son Pham, doctors at Children's Hospital Boston studied his medical records shipped from Toronto and declared they would, and should, treat the boy. Two other U.S. medical centres - in New York and Cincinnati - also offered to help him.

The contrasting opinions highlight a tension that plays out in hospitals every day, said Ilona Frieden, professor of dermatology and pediatrics at the University of California at San Francisco, who specializes in the research and treatment of vascular anomalies.

"The people who are doing the procedures, in the end, have to make the call about whether they feel it's something they can do without causing undue harm by trying to help," she said.

"Everyone wants to help in a case like this, no question about it. You wouldn't be human if you didn't. But it's a question of weighing the risks and the benefits."

In a perfect world, blood would flow through Son Pham's face in an orderly sequence of vessels. Instead, enlarged and fragile veins have invaded the left half of his face, ballooning into a chaotic mound in a condition diagnosed as a venous malformation.

While numbers vary, approximately one in every 1,000 people have this type of vascular anomaly, which is present at birth and can appear anywhere in the body, Dr. Frieden said. But the size of Son Pham's soft growth makes his case rare. "It's certainly a very severe, large, bulky one," she said.

It was the dramatic size of Son Pham's malformation that snared the attention of Karla Hall, who for 12 years has advocated for patients and families as head of the National Organization of Vascular Anomalies, a charity she began after struggling to get a proper diagnosis for her daughter's hemangioma.

"I got chills when I read that statement that they were sending him back," Ms. Hall said. "There are very few things that get me that riled up, and this particular case did. I said, If he were mine, there would be a handful of places that he would go to get a second opinion."

The day after the Nov. 1 announcement from Sick Kids, Ms. Hall left phone and e-mail messages with Son Pham's devastated caretakers, urging them to look to the United States where several large centres specialize in conditions like his.

Venous malformations tend to grow proportionately as a child grows. But they can also suddenly and unexpectedly expand as the result of a clot, trauma or hormonal changes from pregnancy or puberty.

The biggest concern for Son Pham is that the malformation, which already fills half of his mouth, will grow into his airway. The growth could also strain his heart and affect his body's blood-clotting ability, because so much blood is concentrated in one area.

The social toll

According to his nanny in Vietnam, Son Pham had a near-death experience when he was eight: Part of his chin burst open, possibly from a fall. He bled profusely before doctors in Hanoi managed to stitch it up.

But the social toll of vascular anomalies - stares, isolation, taunts and giggles from child passengers on a flight from Vietnam to Ottawa - can also drive the need for treatment.

"We want him to feel good about himself," said Olwyn Walter, vice-president of the Ottawa-based charity the Children's Bridge Foundation, who helped bring Son Pham to North America. She will care for the boy in her Halifax home while he shuttles between hospital appointments.

With a thick Rolodex of U.S. specialists at her fingertips, Ms. Hall connected Ms. Walter to U.S. medical centres and patients who had experienced their care.

Several hospitals showed interest, but Ms. Hall advised Ms. Walter to consider two things when choosing one: their qualifications and location.

"Even with the best surgeon in the world there are complications that occur with a surgery like this. And being able to get back to where you need to be - which is the surgeon that's doing the work - has got to be easy," Ms. Hall said.

While Boston doctors have not laid out a treatment schedule, the general plan involves two phases, Ms. Walter said.

First, Son Pham will travel to Boston every four to six weeks for a treatment known as sclerotherapy. Injections of an irritating solution will help shrink the abnormal veins, hence blood flow to his face, reducing the chance of him bleeding badly during Phase 2: surgery.

Doctors will carefully slice away portions of the mass during a long and difficult operation. "The idea is to help - not cure him, because that's not really possible - but shrink it dramatically and try to make his life as normal as possible," Dr. Frieden said.

Throughout the process, which could last a year or more, the biggest concerns will be maintaining airflow, stopping massive blood flow and managing pain.

"He's going to be uncomfortable for a while," Ms. Hall said.

The process requires a multidisciplinary team that will be led by John Mulliken, a veteran plastic surgeon who has devoted his career to the treatment and research of vascular anomalies. He co-directs Boston Children's vascular anomalies centre, which over the past 20 years has grown to include 26 doctors representing 17 specialties who, according to the hospital website, assess 1,200 cases a year.

Sick Kids Hospital has refused several Globe and Mail requests for interviews with doctors involved in Son Pham's initial medical assessment. However, spokeswoman Lisa Lipkin said this week that their difficult decision hinged heavily on social and psychological reasons.

Toronto's treatment plan, which spanned several years, "would take its toll on any child, but especially for Son Pham, who would be separated from those he considers family," she said. She declined to elaborate, citing patient confidentiality.

'ARE YOU SCARED?'

Ms. Walter says she's certain Son Pham is in the right place.

Everything about this first week in Boston felt good, she said, from the doctors who gently solicited the boy's questions and are donating their time, to the woman at the hospital's International Centre who offered him a free room in her home. A $150,000 (U.S.) chunk of the hospital costs will be paid by a Boston foundation, and Children's Bridge must raise the rest of the approximately $300,000 cost.

She and other Children's Bridge staff have weighed each tough decision as if Son Pham were their own child, she said. But they've largely taken their cues from Son Pham.

He's never wavered in his desire to have his face fixed, Ms. Walter said. Although sometimes she worries that he may not fully comprehend the difficult road ahead.

Yesterday, more than 24 hours after undergoing an operation to insert his tracheotomy tube, Son Pham awoke groggy and thirsty in intensive care, his caretakers hovering nearby.

Perhaps the boy's true feelings showed after a full day of doctor's appointments on Tuesday, when he was asked how he felt about the future.

"Are you scared?" asked Tan Ngo, a Children's Bridge program manager who accompanied the boy from Vietnam to Canada.

Son Pham nodded.

"Are you happy?" Mr. Ngo asked.

Son Pham nodded again, smiling.

VENOUS MALFORMATION

What is it?

A venous malformation is a bluish lesion on the skin, mucous membrane or in any organ system. It is composed of abnormally formed, dilated veins. The walls of these channels are unusually thin because of a relative lack of smooth muscle cells.

What are the causes?

The deficiency of smooth muscle lining cells may be critical. DNA studies from families with multiple VMs have shown mutations in genes responsible for the formation of and communication between the endothelial lining cells (the cells lining the blood vessels, heart and lymphatic vessels) and the smooth muscle cells in the walls. No known food, medication or activity during pregnancy can cause a VM.

When do they occur?

VMs are usually present at birth, but not always seen. They can show up at any time during the individual's lifespan.

Where do they occur?

Most common in the skin, they can be present in other tissues, such as muscle or bone, or in any organ, such as the bowel, liver or spleen.

What do they look like?

They are dark blue and usually soft, although they can become firm if a clot forms. Their appearance ranges from small dots to large lesions involving skin and muscle. They can be single or multiple.

What are possible

complications?

VMs tend to grow proportionately - that is, they grow at the same rate as the child. They also can suddenly expand as the result of clot formation within the VM. They also can enlarge as the result of injury or during puberty and pregnancy. Large VMs can be associated with a clotting abnormality. A VM within the brain or gastrointestinal tract can suddenly bleed.

How are they treated?

Very small VMs can be treated with a laser. The two main treatment strategies are sclerotherapy, where an irritating solution is injected to shrink the abnormal veins; and total or partial surgical removal.

What research is being done?

Mutations in several genes that cause VMs have been discovered by DNA analysis of families that have multiple lesions. These discoveries will enable investigators to better understand how VMs occur and may lead to the development of new treatments.

Source: Children's Hospital Boston