Goodbye, Baby Auni

This photo (above), taken last Christmas, is one of the last taken of Baby Auni before she died.

Last September, The New Paper reported on little Auni Syahira, then just eight months old, who was diagnosed with a rare condition called biliary atresia.

This is a condition where someone is born without bile ducts. Their body is therefore unable to transport bile to the intestines, causing the bile to accumulate in the blood instead.

Long-term build-up of bile can damage the liver.

Urgently needing a new liver due to her condition, Baby Auni was fighting for her life.

But on Sunday morning, just four days after her first birthday on Jan 4, she died peacefully in the Intensive Care Unit (ICU) of the National University Hospital.

Her mother, Madam Suriani Senin, 31, said she died of a pulmonary haemorrhage.

What was most painful for Madam Suriani were the near-misses of possible donor matches whocould have saved her daughter.

Madam Suriani's niece, Eman Medina, 2, was a good match, as she had an O-positive blood type and was healthy.

"But if Eman donated her liver to Auni, she herself wouldn't have survived," explained Madam Suriani.

"It would be unfair if Eman were to sacrifice herself for my daughter," she added.

Final glimmer of hope dashed

Baby Auni's grandmother, Madam Zalehar Yusope, 63, was also a suitable candidate, but was rejected as she had diabetes.

There was another man, whose identity Madam Suriani declined to reveal, who was a perfect match, and all ready to donate.

But she said he became uncontactable before the medical clearances were completed.

Then, two days before Baby Auni died, the family received a final glimmer of hope.

A patient, who was declared brain dead, appeared to be a suitable donor with compatible blood type.

But it was another disappointment, as the patient had low blood pressure and her liver was deemed
unhealthy.

On Sunday morning, Baby Auni's condition deteriorated.

At about 1am, her blood pressure plummeted and she was rushed to the ICU and puton life support.

Doctors told Madam Suriani that they were left with one option - to put Baby Aunion a medical ventilator.

But the little girl responded badly, bleeding profusely through her nose and mouth, until medical staff had to cover her face with gauze.

The difficult decision

Then, Madam Suriani had to make the difficult decision - allow doctors to perform CPR (cardio pulmonary resuscitation)on Baby Auni until it was impossible to revive her, or remove all supporting apparatuses and let her slowly slip away.

After agonising over her choices, Madam Suriani chose the latter, as she didn't want to risk breaking her baby's tiny rib cage.

She also wanted to be able to hold her child in her arms one last time.

Baby Auni didn't cry or struggle.

She lay there looking at her mother and grandmother, then she was gone.

If it is any consolation, at least she lived to see her first birthday on Jan 4.

Her brothers, Ahmad Syahir, 5, and Ahmad Syirhan, 2, don't really know what happened to their sister, said Madam Suriani.

She said: "I told the elder one, 'Little sister is very tired, she needs to rest in heaven'. So when relatives ask him 'Where's Auni?', he will answer, 'In Heaven'."

Madam Suriani added: "I'm happy she's in a better place. When she was with us, it was painful to see her being poked all over her body with needles every day."

Finding a liver donor

The liver is a vital organ in the human body.

It performs three main functions – taking toxins out of the blood stream, making glucose to be converted to energy later on, and producing bile, which digests fats.

Dr Tay Khoon Hean, director of Tay Khoon Hean Surgery at Gleneagles Medical Centre, explained that there are two main types of liver transplants – cadaveric and living donor transplants.

In cadaveric transplant, the whole liver is taken from a recently deceased person and put into the recipient’s body.

Dr Tay said that every year, there are only 15 to 20 donors who fall in this category, despite the Human Organs Transplant Act (HOTA) trying to raise the numbers.

For living donor transplants, the patient receives part of a liver from a living person, usually a relative or a close friend.

For an adult-to-adult transplant, half of the liver is taken, but certain conditions must be met.

First, the blood type between donors and recipients has to match.

Then, CT scans, MRIs and blood vessel assessments are conducted on the potential donor.

Such tests are necessary as everyone’s liver structure is unique, and it has to be ensured that the hepatic arteries, portal vein, and bile duct are compatible with the recipient’s body.

Dr Tay said that in an adult-to-child transplant, only one-third of the donor’s liver is taken.

This is usually done for babies or children who have bile duct problems, such as in Auni’s case.

fabkoh@sph.com.sg

This article was first published in The New Paper.