Tricia and Cathy were excited but daunted when they found out they were pregnant with multiple babies. Then they found out they had twin-to-twin transfusion syndrome (TTTS)…

After a difficult time finding a clinic they were happy with, and choosing donor sperm, the couple were delighted when they found out Cathy was pregnant. “Two weeks after we got the positive Cathy started bleeding,” Tricia recalls, “they were great at the clinic - they got me straight in for a scan,” says Cathy.

“They told us there were twins and they thought they could see a third baby. Then Cathy had another big bleed, and we went back again. They scanned us again and said that there were triplets.”

Cathy was eight weeks pregnant. The clinic confirmed that the reason she had bled was because they had lost a fourth baby; she had actually been pregnant with identical quads - her one egg had split into four. And now there were three left.

With a 5-year-old son with undiagnosed Aspergers and an energetic one-year-old son, the news was daunting. “We were like ‘Woah! How are we going to deal with triplets?” says Tricia, “I think Cathy spent a week on the sofa crying.” “I’m not normally a tearful person but that got me!” Cathy remembers.

The pregnancy progressed. Sadly at the ten-week scan they found out that they had lost another baby. The triplet had passed away but had not miscarried.

“They did say that could cause a miscarriage and all sorts, but we were very much like, let’s take it one step at the time, you can’t control things, you’ve just gotta roll with it,” says Tricia.

From this point Cathy was monitored closely, with scans every two weeks. By this time they were no longer under the care of the clinic where they had done the IVF, but were with the NHS in Chichester. It was decided that they’d have their standard anomaly scan two weeks early, at eighteen weeks.

By this time the couple had named their babies; Jessica and Katy. “The lady was scanning, checking stuff saying, ‘yeah that’s right, that’s right, everything’s fine’ and then suddenly she went quiet,” says Cathy. “She was looking, and clicking, and looking, then she said, ‘I’m going to speak to someone.’ She came back and said ‘I think there’s a problem with your baby’s heart. You need to speak to the consultant. They couldn’t find the membrane sack either.” The couple found out later that this is a huge alarm bell for twin-to-twin transfusion syndrome (TTTS), however the consultant diagnosed a congenital heart problem, saying all of Jessica’s valves were on one side of her heart.

“They didn’t understand why, if it was congenital, Katy didn’t have it too,” Tricia recalls. They were told that for now the babies were safe inside Cathy, the problems would come after the birth.

The couple were referred as an emergency to the infant heart specialist hospital in Southampton and seen by a specialist who had seen them earlier in their pregnancy.

“He scanned, made a call, got a colleague in, carried on scanning. Half an hour on and they hadn’t said a word to us.” Says Tricia. “We were thinking, ‘come on…!’ We thought ‘maybe they’re making a plan.’ They kept saying these big words we couldn’t understand.”

Finally the specialist took them into his consulting room and told them it was TTTS - the twins were sharing blood, fluid and nutrients through the placenta – Katy was getting it all but passing it straight to Jessica who couldn’t pass it back.

“He drew us a diagram of Jessica in this great big sack, and Katy in the corner in the tightest little sack,” Tricia says. “He said, ‘Jessica is in heart failure - her heart is twice the size it should be, it’s got tears, holes and fluid all around it - Katy has got no fluid at all, is in renal failure, is probably starving of oxygen and may even be brain damaged. Your babies are extremely poorly and we advise you to terminate.’” “We said, ‘No - we just saw them moving on the scan.’ He said, ‘they shouldn’t be moving – that’s how poorly they are.’” says Cathy.

Tricia continues: “He said, ‘right, the other option is we could put a clip on twin one which would give twin two a chance of living, but she may still form a disability depending on how much oxygen she’s getting.’ We were like ‘No, we’re not doing that either – she’s still moving - we’re not giving up on her.’ He said, ‘right, the third option is I send you to TTTS experts at St George’s in London for a laser operation, but they might not do it because of how poorly the babies are.’”

The next day the couple went to London and spent the day having scans. “They were the loveliest people ever,” Tricia remembers. “They sat down with us and said, ‘yes, your babies are very poorly. If we do a laser operation there is a third of a chance they’ll both die. There is a third of a chance one of them will die. There is a third of a chance they’ll both live. But if we don’t do anything, they’re definitely going to die.’ So we were like ‘right let’s do this operation.’”

Cathy was checked in at 7am the next morning for an operation by worldwide specialist, Professor Baskey Thilaganathan. Amazingly, the procedure was done under local anaesthetic, with Cathy sedated but awake. Tricia explains: “They gave Cathy a local anaesthetic, then popped a probe with a camera and a laser in her side, into the womb. Then we watched on a screen - the inside of Cathy’s womb! That’s the first time we ever saw our babies.” “At 19 weeks, in the womb!” Cathy exclaims. “It definitely beat the 4D scan!” says Tricia.

“Professor Baskey knew exactly which veins were going wrong on the placenta and lasered through them to stop the girls from sharing,” says Tricia. “And then they released litres of amniotic fluid that Jessica had, to ease the pressure off her heart,” say Cathy.

Tricia continues: “Professor Baskey then took the time to show us Jessica’s face, her hands, her feet… then he swung around and showed us Katy. She was shrink-wrapped, like she was wrapped in cling-film. She was trying to move and couldn’t because she had no amniotic fluid and her sack was so tight. It was really upsetting.”

Cathy then had to wear a patch to prevent her uterus from contracting, which can happen because the uterus has been irritated. There was then an agonising six-hour wait to see if their babies had survived...

 

The story does ends happily, but the full story, with all its ups & downs, is continued in
We Are Family magazine issue 9 - out September 2015

 

For more information or support visit

TAMBA Twins & Multiple Births Association tamba.org.uk/TTTS
UK Twin to Twin Transfusion Syndrome Association Twin2twin.org or twin2twin.co.uk

More info on TTTS

Twin Transfusion Syndrome or TTTS… affects twins who share not only a placenta but also some of the same circulation, resulting in the transfusion of blood from one twin (the donor) to the other (the recipient) in the womb. In most cases the donor twin may become smaller and anaemic due to not having enough blood supply. The recipient twin has a higher blood volume, which can strain the foetus’s heart and lead to heart failure.

This article/list was printed in We Are Family magazine, issue 8, Summer 2015.

Details may have changed - please do not rely on this information solely when making decisions - do your own research, make your own checks and get legal or health advice as appropriate.

To buy a copy of issue 8 of We Are Family magazine click here