Mum's heart-wrenching experience of twin-to-twin transfusion syndrome inspires book: 'Never let myself get excited'

Picture: Instagram
Picture: Instagram 

Diana Nicholls' twins may be three and-a-half years old, but the trauma of her difficult pregnancy and birth is still raw.

After discovering she was carrying twins at 10 weeks - having initially being told she was expecting just the one, the personal trainer had a few weeks of excitment before a crushing diagnosis. 

Her twins had twin-to-twin transfusion syndrome (TTTS), a rare condition which can affect multiples who share the same placenta, where there is an imbalance in the blood flow received. Meaning one twin receives too much, the other not enough. 

The condition can be fatal for one or both twins and can lead to pre-term labour. 

For Diana and the twins' dad Cam, what had been a longed for pregnancy quickly became a stressful and unpredictable experience. As she told Essential Baby, they very much lived day to day as she underwent regular scans to check on their growth.

"That meant went going in (to hospital) every two-three days to have an ultrasound. They were watching to see how it was progressing, in all those scans we were seeing one twin not growing, while the other one's heard was working so hard because it was receiving so much blood," she said.

Doctors decided she would have to undergo surgery on her placenta to try to even the flow, by using lasers to remove adjoining arteries. But it came with significant risks.

"It was such a high risk. I was told we could potentially lose the whole pregnancy. And if successful, we'd likely deliver 10 weeks later, so they wanted to delay it as long as possible to keep them in there as long as we could," Diana said.

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Although successful in helping her smaller twin to grow, it left the bigger twin needing two lifesaving blood transfusions.

"Originally the initial surgery was all about the smaller twin not growing," she said. "That was a success and we could see it was helping the smaller twin, the baby was moving a lot more which was a really good sign."

"But then the larger twin became anemic and had to have two blood transfusions through my uterus. I never even knew they could do that." 

What followed was an anxious wait until it was decided the twins would have a better chance outside the womb than in, with Diana clinging to a hope of making it to 30 weeks.

"I've never lived so day by day in my life, I was seriously ticking off days. I was always getting scans and holding my breath - will there be two heartbeats? It was the first thing i'd check."

"Before the surgery I knew the smaller twin could just die at any minute. I had great specialist care, but between those scans I'd always question 'What if something happens and no one is checking that day?'."

​"There was always that worry. I never knew at what point or when i'd deliver, how many I'd have (survive) and what state they'd be in."

​Diana made it to her goal, delivering both baby girls at 30 weeks, one day.

"I saw them for 30 seconds and they were prepped for life support, really, and taken straight to the NICU. I went into recovery and then an hour later I saw them. The birth felt like another day I had to tick off," she said.

"There was a moment of excitement, but it was always clouded by everything that was going on. The whole pregnancy I never really let myself get excited. I was so scared about how I would react seeing them. They were very, very tiny."

While the smaller twin, who she named Evie weight 788g, bigger sister Adrian weighed 1099g. 

On day two she was able to hold Adrian, by day four she managed a skin to skin hold with Evie. After 57 days, she was able to bring Adrian home, on day 83, Evie joined them. But even in the NICU there were never any assurances.

"We nearly lost Evie at about four-five weeks, she developed a serious stomach infection that premmies can get early on. We spent a week watching her so very sick, it was very touch and go."

"Even when we brought her home we discovered two hernias in her stomach, she had to have surgery and came home on oxygen for quite some time."

Thankfully, the girls have grown into boisterous preschoolers who Diana describes as 'hilarious and exhausting'. But the trauma still lingers. What's helped is writing, which Diana turned to as a distraction during the pregnancy, and which led to her publishing her book 30 weeks, 1 day.

​"It's really hard to talk about these things, so I thought I'm going to write about it. I wrote a lot when the girls came home. I was really depressed and it really saved me in terms of being my therapy, alongside seeing a pyschologist," she said.

"I wanted to turn it into a book to help other mums in a similar situation. Because there can be a lot of judgement. People can dismiss your feelings and tell you 'that was then, it's time to move on."

"It just doesn't work that way. Even if there are no (ongoing) issues, it still affects mothers. It's life changing. Three years on it's so much better, but it takes years just to have a conversation with someone."