Jane Ferns and her husband with their twins in newborn intensive care unit. Image Credit: Supplied

Jane Ferns’ pregnancy was so unexpected that her doctor warned her it could be a false positive. The 34-year-old had just undergone a surgery for endometriosis, and conceiving months later seemed too good to be true. However, a few weeks into the pregnancy, Ferns went back for a scan and the pregnancy was confirmed.

“When she saw the scan, she found one heartbeat, and she said, ‘Okay, perfect, there is a heartbeat’, and we were all happy. And just when the scan was about to come to an end, she discovered there was another heartbeat. She said, ‘you are having twins’,” the Indian expat recalls.

What is endometriosis?
Endometriosis is a condition where the tissue that constitutes the uterine lining grows outside the uterus. This ailment may cause infertility – or at least difficulty in conception. According to the global news platform, this condition affects an estimated 1 in 10 women during their reproductive years (i.e. usually between the ages of 15 to 49), which is approximately 176 million women in the world.

It was a surreal moment. “I said it's impossible because I don't have twins in my family. We don’t have twins in his [husband’s] family,” she says. But, then the doctor explained that having identical twins is not contingent on genes – they can happen to anybody. UK-based National Health Service says everyone has the same chance of having identical twins: about 1 in 250.

Leaving NCIU
When the infants reached 1.8kg about 50 days on, they were ready to be discharged

High risk pregnancy

Even as they digested the news, their doctor sat them down for some hard truths. “I think in the first meeting itself, my doctor explained to me the complications that come with identical twins because they share either the sack or they share the placenta. It was too soon for us to understand what they were going to share. But we later came to know after a couple of weeks that they are sharing a placenta,” she says.

Because of the nature of the pregnancy – twins – it was termed high risk; Ferns would now have to have scans every two weeks unlike mums-to-be with low risk terms who have scans every month or two.

“The rest of the pregnancy was very, very smooth. I had no issues,” she says.

In time they found out they were having girls. “Identical twins will always be the same gender because the DNA is almost the same,” she explains.

Before and after twins
Ferns pregnant with her babies just ahead of their birth (left) and with the healthy 28-week-old twins.

That is until the 28th week scan. “That was a sad day. It was the day of my normal scan. That's when I went and the doctor discovered that I've already reached [stage two] of twin to twin transfusion syndrome (TTTS), which only happens when you're having identical twins, because they're sharing the placenta.”

What is twin to twin transfusion syndrome?
The American Pregnancy Association explains TTTS as a disorder that occurs when identical twins and higher-order multiples share a placenta. The association explains on its website: “This results in one baby (this twin is referred to as the recipient) receiving more blood flow, while the other baby (this twin is referred to as the donor) receives too little. Twin to twin transfusion syndrome is also referred to as chronic inter-twin transfusion syndrome. TTTS occurs about 15 per cent of the time among identical twins.”

The news brought a cloud of gloom: “Usually, TTTS happens between 16 to 26 weeks and when after 26 weeks went by and I showed no signs, we were actually very happy because we thought we had crossed that mark.

“I thought I only had to focus on taking my pregnancy all the way to 36 weeks – that was my goal.”

Sudden operation

The blindsided mum was also concerned because of the nature of the pregnancy; if you lose one, it's a matter of time, you could lose the other, she explains.

Instead of heading home, her doctor decided to admit her into hospital. “So even if things go well, the first approach was to do amino reduction surgery where they would correct the fluids in the two sacks … the doctor said, ‘we will do it the following day’. So the whole night I was monitored; the babies’ heartbeats were monitored, my contractions were monitored.

“The next morning, when the doctor came to do the scan, I had reached stage three TTTS.”

“Now stage three is a danger zone because what happened is one of my twins, her heart flow started reversing because she was the recipient … there was so much fluid around her that she was suffocating. Her heart flow started to reverse, which is a dangerous sign - the doctor said we may lose her soon,” she recalls.

“So, the doctor says, ‘Jane, the first thing we need to do is an emergency C-section’. And I was just not prepared. Because you know, I was like the delivery is happening in June and this was April… but there was nothing for it. I had the operation, the babies came out.”

Baby shoot
The babies three weeks after being discharged from NICU.

As big as a palm

One weighed a kilo; the other 900grams. That’s not much bigger than the palm of your hand, says the mum of two.

“In those last 24 hours they lost a lot of weight because of all the stress that was going on. They did not show me the babies because they had to be given the oxygen support immediately. After the C-section, they whisked the babies away to the newborn intensive care unit (NICU) unit in the hospital,” she recalls. She wouldn’t see her children for three days. “It was only after three days that I could physically go and see them in the NICU,” she says.

“And that's when it hit me, because I just could not see them. They had 10,000 wires all over them. So you know, I had people calling me Jane who do they look like? Is it you? Is it your husband? And I was interested to tell him all these responses. But when I went there, I was aghast because I just couldn't see their faces. They were tiny, of course, and they had 10,000 wires all over their body, from their head to their feet, to their stomach, to the throat, the nose, everything. And I think that is what gave me a shock. And this is something that I was definitely not mentally ready for.”

But her Facebook friends helped: “Somebody recommended this Facebook support group called micro preemie group, which is only for all the micro preemies in the world. That means all babies who are born at a gestation period of 28 weeks of below.

“That's when I joined this group, I realised that all the terminologies that the doctors use whatever they go through with the different machines they use for oxygen support.”

Reading about others who had gone through the same thing and come out the other side was reassuring.

In and out of hospital

The next 50-odd days were a blur of hospital visits. “I think for the next 50 days we would go together and see the babies. Yeah. That period was tough because they had some complications when they were in NICU, there was a bit of a scare.”

Feeding times were also bittersweet. “They had to tube fed, so there was a wire that was connected straight to their stomach. So I would pump; I would express milk. And then we would take it to the hospital and they would put the milk in small little syringes, which was connected to a wire and then the wire would go down all the way to the stomach,” she says.

All the while, the parents were on auto-pilot. “The only thing for me was the hope to see them grow. I was scared even after I joined this group because I’ve also seen it, babies who are in a NICU have also passed away because of the complications that happen to them.

“I mean, there are so many issues that could crop up, right from brain bleeds to an intestinal disorder to respiratory issue. So there are so many issues where the baby just can't fight the battle. And, you know, and the life is gone. So for me, it was all about the whole focus on them; what's happening, their weight gain….”

The doctors meanwhile were concerned with building immunity. Each day, all the caretakers saw these brave little ones fighting for their lives and growing up. “When it went from 28 to 32 to 34 weeks, different milestones of gestation, you could see different development. Then there was a point where the baby was able to breastfeed directly, start breathing on their own - it was a very, very different experience than anyone I knew had gone through,” she says.

Support groups for parents of twins
Dubai-based Small and Mighty
Micro preemie group

Ready to go home

When the infants reached 1.8kg about 50 days on, they were ready to be discharged. “It's beautiful to watch them grow. And I think we've been so thankful and grateful that they fought the battle, they fought the battle for us,” she says.

“They both have very different personalities. So one requires attention all the time. And the other is, the other one is a bit quiet … they really balance each other out.”

As for their current age, it requires a little math to figure that out. “So what happens is because they premature twins, at least for the first one-and-a-half years of life, there will be two kinds of ages. So actual age is six-and-a-half months. But their corrected age is four months.”

What this means in everyday parlance is that for the first year-and-a-half, their milestones must be mapped according to their corrected age.

Ferns isn’t worried – the kids are home, happy and safe. Life has returned to normal – sleepless nights and crying babies, check. She wouldn’t have it any other way.

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