Seventeen-month-old identical twins Emma and Clarita Maglaya were never expected to leave hospital when they were born with a genetic condition so rare they are the only known cases in Australia.

But the toddlers' parents Emily and Fred, both in their 40s, have finally been able to bring them home to Zillmere, on Brisbane's northside, just in time for their second Christmas.

The Maglayas have had little time for setting up a Christmas tree or shopping for presents since the twins left the Queensland Children's Hospital earlier this month, but they have already received the most precious of gifts with their little girls' homecoming - hope.

"Initially they had told us that they might not be able to make it," Fred said.

Seventeen-month-old twins Clarita and Emma Maglaya have only just left hospital after being born with a rare genetic condition.
Seventeen-month-old twins Clarita and Emma Maglaya have only just left hospital after being born with a rare genetic condition.

"It feels like our first Christmas together with them. Last year we couldn't take them home because they were so medically compromised."

Emma and Clarita were born on June 25, 2019, with a condition known as TTC7A mutation, which causes severe immune deficiency and extreme inflammatory bowel disease. They cannot eat or drink.

The girls require weekly infusions of immunoglobulin, a blood product, to protect them from common infections; they are fed intravenously and because of bowel blockages and scarring, they wear stoma bags, which require regular emptying.

They spend 17 hours a day hooked up to medical equipment.

Queensland Children's Hospital general paediatrician David Levitt said the girls' medical issues were so serious, he doubted for almost their first year of life they would ever be able to leave hospital.

Of the few dozen other cases documented internationally, he said only "a handful" had ever been able to go home.

"Essentially, the girls can't have anything by mouth, no water, medications, food of any description," Dr Levitt said.

"Their treatments are just such a high burden of care. For parents to look after twins made it almost impossible to consider getting them home. The actual therapies themselves, individually, would have made it very hard. There was great trepidation for all of us. We didn't think we'd get to this point."

Parents Fred and Emily Maglaya with their 17-month-old twins Emma and Clarita. The twins have only just left hospital in time for their second Christmas.
Parents Fred and Emily Maglaya with their 17-month-old twins Emma and Clarita. The twins have only just left hospital in time for their second Christmas.

Emily, 47, and Fred, 49, both from Manila in the Philippines, married in 2015. They tried for three years through in-vitro fertilisation to start a family before Emily finally fell pregnant with the twins.

"We just wanted to start a family," she said. "We'd been waiting for a long time. When we had them it was a dream come true. It was a big blessing for us."

But Emily said a feeling of hopelessness crept in before the girls' first birthday as the enormity of their health issues became overwhelming.

"I got emotional thinking: 'Oh goodness, is this our life? Coming to the hospital every day and there's no hope of going home. I'm weary already'," she recalled.

Dr Levitt said getting such medically complex children home would have been impossible when he started medicine more than three decades ago.

"I'm just blown away by the progress that has been made," he said.

As the girls grew and their condition stabilised, Queensland Children's Hospital nurse navigator Maria Ronan began working with the Maglayas to get their little girls home with assistance through the QCH hospital-in-the-home program.

On December 10, after months of planning, Fred and Emily finally left hospital with the twins.

Mrs Ronan, who helped the Maglayas organise a christening for Emma and Clarita last Christmas, said seeing them finally leave hospital a year later was "pure joy".

"The twins were really well in hospital despite their medical complexity and this is a credit to the excellent standard of care from all involved, including Emily and Fred. They've been unbelievable parents and these are adored, much wanted children," she said.

"Years ago, I don't know if I would have been crying and saying: 'This is so good,' but now, I just feel so happy for the parents, I just feel joy.

"Getting children home and seeing a family get together, sometimes even if it's just a few hours at home … it makes a significant impact to that family to be able to build memories. I think we all want them at home. It's not right to be in hospital for life."

Dr Levitt said "exceptional, gold standard" nursing care had kept the girls free from major infection during their hospital stay and allied health workers had ensured they were stimulated, allowing them to develop as normally as possible.

"They are delightful young girls now and they've developed beautifully despite what they've been through," he said.

"They just are amazing."

Life since the girls have been home has been hectic and exhausting as the Maglayas adjust to family life outside of hospital.

Toddling around with lines attached means the girls can easily get tangled up together.

But the twins, who "love the Wiggles", have both put on weight since leaving hospital.

"They're so happy," Emily said with a smile. "They felt so at home even on the first day we brought them. They were just roaming around, so excited.

"It's the best thing that's happened this year - being a family at home. It gives us hope.

"As a Mum, I don't understand why they have this condition but I always believe everything has a purpose.

"They keep on teaching us to fight against all odds, to hold on to hope and miracles. Bringing them home is already a miracle."

To donate to Children's Hospital Foundation: childrens.org.au

 

 

 

 

 

 

Originally published as Twins home from hospital after 17 months



Daily Catch-Up: March 3, 2021

Premium Content Daily Catch-Up: March 3, 2021

Today's local weather, funeral, and other notices in one place.

GREAT DEAL: $1 for the best local news, great rewards

Premium Content GREAT DEAL: $1 for the best local news, great rewards

Your support for local journalism is vital in our community