3 December 2021

First time mum Abbie Hofbauer was stunned when at 17 weeks into her twin pregnancy she was told her girls faced an uncertain future because of the devastating condition twin-to-twin transfusion syndrome (TTTS).

“I had two shocks in a matter of weeks,” said Abbie from Northampton, “first was that I was expecting identical twins, then the fact that I could lose them because of TTTS.

“It was not a planned pregnancy as I had just started my dream job, and I was very sick early on so it was thought I might be having an ectopic pregnancy.

“At 13 weeks, during a private scan I was told I was expecting twins. I couldn’t believe it! My partner Davey was unable to attend, so it was such a lot to take in.

Then when I was 17 weeks pregnant, we found out our twins were suffering from TTTS.

TTTS is a rare but serious condition that can occur in 10-15% of twins that share a placenta.

Abbie said: “I will never forget my consultant stating, rather blatantly in fact that basically “your twins will either survive, you will lose one, have to choose between saving one, or lose both of them. That's how serious this condition is.”

“Those first weeks were quite surreal, from the surprise pregnancy, to twins then for us to face the prospect of losing them to a condition we’d never heard of was really difficult to take in.

“My partner and family were so amazing and so supportive, but I still found it all a bit too much to deal with and my mental health suffered as a result.”

Abbie was attending on her own when she was told about TTTS and what could happen. Her consultant drew a picture trying to explain the condition and said getting to 21 weeks would be good, but 28 weeks would be even better.

She found Twins Trust by googling and found all the information she needed to get through pregnancy and birth and information on TTTS.

“Finding other twin parents who had been through similar emotions was a real comfort and I felt we were not alone. We’d found a community of support.”

 

Abbie continued: “My care during pregnancy was good as I had scans every week. One twin was definitely smaller and they were concerned about me going into early labour. I was put on medication to try to stop this and given steroids for the girls’ lungs.

“Week by week I was waiting for the scan result poised for something to happen. But I managed to pass the 28-week mark and at 32 weeks I was told Sofia was much smaller and had actually stopped growing.

“A decision was made at 34 weeks to deliver by emergency c-section which I was happy about as I’d been worrying ever since the news that she wasn’t growing.”

Sofia weighed 3lb 6 and Freya 4lb 5. Sofia was taken straight to the neonatal ward where she spent the first few days before being reunited with her sister.

I felt so guilty that we weren’t together those first days, Sofia had been robbed of being part of our family.

“But I am thankful that it was only a week until we brought the girls home together, in time for Christmas”

Both flourished when they were at home and Abbie started to look forward to going to baby groups and twins clubs at the start of 2020 – but the first lockdown meant that didn’t happen.

“Like many new mums at that time, it was hard. My partner had to work, and our house was under renovation, so I moved in with my parents.”

Now the girls are about to start at nursery a couple of mornings and will celebrate their second birthday in December.

“They are our bundles of joy. I can see their development is slightly delayed but I think this is more to do with them being premature rather than TTTS and we expect them to catch up with other children in no time.

“I want to raise awareness of TTTS and show that the condition, whilst frightening, does not always lead to a bad outcome. We feel so lucky and blessed to have our two gorgeous girls.

“Research needs to continue into the condition, and I am glad to support Twins Trust in their bid to fund this. We have taken part in the annual walk for TTTS twice now and will continue to do so.