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Short of funds for Boston, toddler Yujia may have surgery here

SINGAPORE — The initial plan was for three-year-old Xue Yujia, who was born without part of her oesophagus, to fly to the United States this year for two operations at a Boston hospital.

Three-year-old Yujia, who was born with oesophageal atresia and has to be fed through a tube, is seen swimming with her mother, Madam Jamie Chua, 31, on June 2, 2017. Photo: Esther Leong/TODAY

Three-year-old Yujia, who was born with oesophageal atresia and has to be fed through a tube, is seen swimming with her mother, Madam Jamie Chua, 31, on June 2, 2017. Photo: Esther Leong/TODAY

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SINGAPORE — The initial plan was for three-year-old Xue Yujia, who was born without part of her oesophagus, to fly to the United States this year for two operations at a Boston hospital.

However, after her parents managed to raise about S$1.2 million — out of the initial target of US$1.55 million (S$2.14 million) — through crowdfunding sites such as Indiegogo and Giveasia to send her there, the little girl may now be undergoing corrective surgery in Singapore instead, at KK Women’s and Children’s Hospital (KKH).

The final decision is not yet made, and the cost for undergoing the surgery here is still not known, but should there be any donation money left unused, it would go towards treating the girl’s other lifelong health conditions such as coloboma (an eye defect) and microcephaly (abnormal brain development), or to foot medical bills in future should there be complications, her family told TODAY.

Yujia was born with oesophageal atresia, a rare birth defect. Missing part of her oesophagus — the muscular pipe that connects the mouth to the stomach — she cannot swallow her saliva, drink water, or eat.
Her saliva has to be suctioned out every two to three hours, and she also has to be fed through the stomach.

Over two meetings in the past two months, KKH had proposed that she receive treatment here, suggesting that there is “existing expertise and capability” to correct the defect.

With that, Yujia’s parents, Mr Xie Wenlong, 41, an event organiser, and Madam Jamie Chua, 31, a housewife, committed to have KKH do a full examination of the toddler’s oesophagus, on the condition that a doctor from Boston Children’s Hospital would consult in the process, either in person or via teleconference.

The date for this is being scheduled, and the family will decide on the surgery plans after the examination report is out.

Madam Chua, who also has an eight-month-old daughter, told TODAY: “This examination will be helpful to assess what’s going on inside (the oesophagus), to help the doctors understand the best treatment plan for her ... Possibly, she does not have to go to Boston at all for this procedure.”

This would mean that Yujia — who also has long QT syndrome, a disorder of the heart’s electrical activity — will not have to endure a 20-hour flight to Boston. 

Her family would also be able to monitor her condition more closely over her four to six months of recovery, her mother said. “It’s a good step for us … We are taking one step at a time,” she added.

Donations from crowdfunding sites crossed the S$1.2 million mark in April last year but since then, contributions have slowed to a trickle.

The family still hopes to raise about S$900,000 more to cover all costs related to Yujia’s treatment. The US$1.55 million needed is pegged to an official quotation given to them last year by Boston Children’s Hospital.

Aware that she is handling a large sum of money donated by the public, Madam Chua posts updates on her daughter’s progress regularly on a Facebook page called Save Baby Yujia. 

“We will definitely be updating our supporters through social media once the surgery plans are confirmed.”

KKH has been monitoring Yujia’s case since she had complications as a baby, with periodic follow-up consultations. The suggestion to let her undergo surgery here was raised during a consultation.

Madam Chua had also been doing her own research online, and that was how she found the Boston hospital which, she said, is known for its expertise in this specialist field. She contacted the hospital and sent Yujia’s medical records via email for doctors to review them. The two parties have been corresponding by phone or email.

On KKH’s end, it still hopes that Madam Chua will reconsider bringing in an overseas consultant.

Associate Professor Low Yee, head and senior consultant of KKH’s department of paediatric surgery, told TODAY that “injecting a non-team-member who has no experience in and unaccustomed to KKH’s environment, even if he or she is accredited to practise in Singapore, does not add further value and may potentially compromise the success of the surgery”.

For now, Madam Chua is adamant that a Boston doctor be involved in the treatment. “Our stand as parents is that if we can get the experts, we will. In Boston, they deal with cases similar to Yujia’s almost every day … We feel more comfortable doing it at KKH with the Boston doctor’s assurance,” she said.

“If the procedure goes smoothly here, it’s okay. But if not, isn’t it better for someone to be there to advise? That’s why I want the Boston doctor to come (to Singapore).”

Her husband, Mr Xie, said: “Our thoughts are that Yujia has gone through too many surgeries. If she (has to do one) again, we want to engage the best doctor to take care of her.”

When his daughter was just two days old, doctors inserted a peg into her stomach so that she could be fed. Then, when she was five months old, she went under the knife again to join her oesophagus to her stomach. 

A complication developed during a dilatation procedure for the second surgery: Yujia’s lungs collapsed, and she had to be admitted to the intensive care unit for two months, and afterwards, she was in a high dependency ward for nearly a year.

“That’s why we find that the Boston Children’s Hospital is our best bet, hearing that the doctors there have a wealth of experience dealing with cases similar to hers,” he said.

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