Northampton mum speaks out about ‘surreal’ experience of twin transfusion syndrome to help raise awareness
“I want to raise awareness and show that the condition, whilst frightening, does not always lead to a bad outcome.”
A Northampton mum has shared her experience of twin transfusion syndrome to raise awareness and help other parents.
First-time mum Abbie Hofbauer, from Northampton, was stunned when at 17 weeks into her twin pregnancy she was told her girls faced an uncertain future due to the devastating condition.
Twin-to-twin transfusion syndrome (TTTS) is a rare but life-threatening condition that affects 10 to 15 percent of identical twins that share a placenta.
It means that the twins share an unequal amount of blood supply from the placenta, which can result in the twins growing at different rates.
Abbie said: “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.”
Today (December 7) marks World Twin to Twin Transfusion Syndrome Awareness Day, and Abbie hopes by sharing her journey she can help others.
She added: “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 losing 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.”
When Abbie found out about her babies’ condition, her consultant said getting to 21 weeks would be good, but 28 weeks would be even better.
She sought support from Twins Trust, an organisation that offers help and guidance for twin parents.
“Finding other twin parents who had been through similar emotions was a real comfort and I felt we were not alone. We had 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,” Abbie said.
“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 now the girls are about to start nursery a couple of mornings and will celebrate their second birthday in December.
Abbie added: “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.”