Parents of twins with rare condition: We can’t hold our babies
Twins have rare condition affecting 1 in 1,600 pregnancies
Every time she hears her two-week old twins cry, she feels guilty and also cries.
Gabriel and Raphael were born three months premature and Madam Caroline Tio, 28, blames herself for not being able to carry them to full term.
She was diagnosed with twin-to-twin transfusion syndrome (TTTS), a relatively rare complication that affects one in 1,600 pregnancies.
The condition happens in identical twins when there is transfusion of blood from one twin to the other through connecting blood vessels in the placenta, which they share.
The recipient twin, who is usually born larger, may have too much blood and may develop heart failure.
The donor twin may have too little blood to develop healthily in the womb.
As a result, Gabriel and Raphael were born on May 20 with medical problems, including weak lungs.
Since their births, the twins have been in the neonatal intensive care unit at the National University Hospital (NUH).
Parenthood, meant to be an exciting journey for first-time parents Madam Tio and her husband Michael Wahjudi, has become a combination of lingering guilt and sadness instead.
Mr Wahjudi, 30, a building consultant, said: "When we take public transport and see another mother carry her baby, we are a bit jealous.
"When I'm in the ward, I see the other mothers already holding and breastfeeding their babies.
"But for us, we have two babies, but we can't do any of those things."
The twins' condition was discovered close to 26 weeks into Madam Tio's pregnancy.
A routine ultrasound scan showed that the smaller foetus did not have a bladder - a sign of TTTS.
To prolong the pregnancy, Madam Tio went for a laser procedure on May 10 - four days after the diagnosis - to allow the twins to develop independently.
This cuts off all connecting blood vessels between the twins, which stops one twin from getting more blood than the other.
When the smaller twin still did not develop well, Madam Tio was admitted to NUH.
She went for an amnioreduction procedure a week later to drain out excess amniotic fluid surrounding the bigger foetus.
"This reduces the amniotic pressure, which cuts down the risk of preterm labour.
Barely 1½ days later, Madam Tio's water bag ruptured with a 4cm cervix dilation - a sign of labour. She delivered the babies through caesarean section, a safer option as compared with natural delivery.
Gabriel, the bigger twin, weighed 1.33kg at birth. Raphael, born a minute later, weighed a mere 860g.
CRY
Madam Tio said: "I heard my boys cry a lot and I cried too.
"Doctors asked if I was feeling pain from the c-section.
"But I said no, it's because I felt very guilty that I couldn't keep them longer in my womb."
Doctors are now using medication to help develop their lungs, said Mr Wahjudi.
Both babies are also on ventilators.
Raphael, especially, has "loose" lungs, which means air can leak from them, he added.
The smaller twin is also battling an infection - a critical condition due to his underdeveloped immune system.
Both babies are now undergoing intensive care for their lung problems, said an NUH spokesman.
The couple say words of support from friends and family help them stay positive, but the uncertain prognosis for the twins still leaves them fretting.
Madam Tio, an administrative executive, said: "Even now, I'm still wondering why this is happening to me."
Bills are also a huge concern for the Indonesian couple, who are permanent residents here.
They have set up two online fund-raising campaigns. (See report on facing page.)
Madam Tio said she now lives day to day, praying she does not receive any emergency calls.
"Now, I just try to think positive... If I can pass each day without any emergency call, I will be really relieved," she said.
As for Mr Wahjudi, his wish is simple "I don't need them to be smart kids or the best students in school.
"I just want them to enjoy a normal life...
"I want to see them graduate from school, have a family and also help other people," he said.
Couple goes online to raise funds
With Gabriel and Raphael expected to be in the neonatal intensive care unit (NICU) for at least another three months, Mr Michael Wahjudi, 30, and his wife Caroline Tio, 28,admitted that they are feeling stressed over the medical bills.
As of June 1, they have paid $24,000. The National University Hospital (NUH) will be able to provide an estimated bill size only when the twins' conditions have stabilised.
Mr Wahjudi said he cannot ask for money from his father, who exhausted his savings raising him and two other siblings alone. The couple are also supporting Madam Tio's father, who was recently hospitalised in Indonesia.
As the couple's savings are dwindling, Mr Wahjudi decided to set up two online fund-raising campaigns.
So far, the couple have raised more than $1,000 from both campaigns.
A spokesman for NUH said: "The patients are receiving a government subsidy for their care and our medical social worker is also in touch with the family to provide assistance, where required."
DONATIONS
The couple intend to raise whatever they can, then pass the excess donations on to other needy parents.
"We have already received so much kindness from people, we should pay it forward," said Madam Tio.
Mr Wahjudi added that he plans to volunteer at the NICU after his twins' conditions are stable.
"I see the mix of desperation and hope on the faces of some of the parents there and I want to help them because I know how it feels," he said.
What is TTTS?
Twin-to-twin transfusion syndrome (TTTS) is a condition where there is an imbalance of blood flow across blood vessels.
This means one twin will have more blood, causing it to grow bigger and have more amniotic fluid around it.
The other twin will receive less blood, causing it to be smaller and have less fluid.
The recipient twin may receive too much blood for its heart to handle, while the donor twin may receive too little blood to enable proper growth in the womb.
If left untreated, up to 90 per cent of twins with TTTS may not survive, said Associate Professor Mahesh Choolani, senior consultant at the National University Hospital (NUH) Women's Centre.
He called TTTS, which occurs in one in 1,600 pregnancies, a relatively rare pregnancy complication.
It affects about 15 per cent of monochorionic diamniotic (MCDA) twins - identical twins where the foetuses share a placenta, but have their own amniotic sacs.
MCDA twins make up two-thirds of all identical twins.
TTTS can be detected during ultrasound scans.
Dr Wee Horng Yen, an obstetrician and gynaecologist at O & G Care Clinic, said twin pregnancies are scanned in the first trimester to determine if the foetuses share a placenta (also known as monochorionic).
In monochorionic twin cases, the mother will have to go for frequent scans to detect if there is a possible onset of TTTS, he said.
The prenatal condition can be treated with laser photocoagulation, which blocks the blood vessels that communicate between the two foetuses.
This stops the blood flow between the twins - much like separating the placenta - allowing each twin to develop independently.
NUH started using laser photocoagulation last year to treat TTTS, a method that Prof Choolani said raises the survival rate of affected twins.
"With laser treatment, up to 85 per cent of at least one of the twins can survive. In the five cases we have treated (with laser) so far, eight out of the 10 babies were born alive," he said.
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