Parents Thank Hospital 'miracle workers' after Surgery on Unborn Twins

A family who were told they could lose one or both of their identical twin girls celebrated an extra special Christmas thanks to 'miracle workers' at two hospitals.


A family who were told they could lose one or both of their identical twin girls celebrated an extra special Christmas thanks to 'miracle workers' at two hospitals.

Sarah and Chris Rick were hoping for a sibling to their daughter Jessica, five, when they were told they were pregnant with not one, but two babies, back in January.

But their surprise and delight soon turned to worry when consultants at Lincoln County Hospital diagnosed the girls with TTTS (twin to twin transfusion syndrome). Within 24 hours the family were at Birmingham Women's Hospital, miles from home, awaiting specialist surgery on their unborn twins.

As part of TTTS Awareness Month, which runs throughout December, the family have spoken about their ordeal to thank the wonderful medical staff and give their support to the Twins and Multiple Births Association's TTTS Registry.

Sarah said: "We realise just how lucky we are to have brought both our daughters home from hospital – so many other TTTS families don't get to do that.

"It's a condition we hadn't ever heard of before so it was frightening when we were told what it was and that one or both our babies might die.

"Our daughters' information is now on the TTTS Registry – which doctors hope will teach them more about the condition. We're so proud to be part of something which will help save twin, triplet and other multiples' lives in future."

Sarah, who now lives near Tuxford but was living in Newark at the time, was told she was expecting twins in January this year. But at her 20 week scan doctors diagnosed her identical twin daughters with TTTS.

The rare and often devastating condition of TTTS occurs in about 10-15% of monochorionic (identical) twin pregnancies. It also affects higher multiple pregnancies which include monochorionic twins. If left untreated, 90% of these babies  will die. Even with treatment, there is only up to a 70% chance of both babies surviving. Of those that do survive, there is a chance they will suffer from a disability or health condition.

The condition occurs when blood passes from one twin (the donor) to the other baby  (the recipient). In most cases the donor twin becomes smaller and anaemic. They also usually have a reduced amount of amniotic fluid and can become 'stuck' to the side of the uterus. The recipient baby becomes bigger and the higher blood volume puts a strain on their heart.

On Tuesday, April 26, Sarah was told twin 1 (Ellie) had excessive amniotic fluid and was "affectively drowning in too much liquid" while twin 2 (Lucy) had hardly any amniotic fluid. She was told a specialist surgery called laser ablation would have to be performed on the twins' placenta. Doctors would insert a camera and a laser into Sarah's womb and a laser beam would seal off some of the blood vessels in the placenta, so both babies receive a more equal supply of blood.

"I asked when the surgery would be, thinking it would be in a few weeks, but they told me I'd have to get to Birmingham Women's Hospital tomorrow," said Sarah.

On Wednesday, April 27, the family made the 80-mile trip from Newark to Birmingham and on Thursday, April 28 (dad Chris' birthday), the twins underwent their surgery. Two litres of amniotic fluid was also drained. After an intense wait, Sarah was scanned and doctors detected two healthy heartbeats and assured her the twins were doing well after the surgery.

"Professor Kilby at Birmingham put us at ease so much," said Sarah. "All the team were absolutely fantastic – they were so kind and comforting, we instantly felt looked after."

Sarah then returned home where she had weekly and then fortnightly scans at Lincoln County Hospital.

Uncomplicated twin pregnancies should be delivered at 37 weeks. But on 2 July at just 29+6 weeks, Sarah started to bleed and was taken into Lincoln County Hospital.

Ellie (the recipient twin) was born at 11.54pm on 3 July weighing 3lb 2oz while sister Lucy (the donor twin) was born at 12.03am the following day weighing 3lbs 0.5oz. Not one to miss out, older sister Jessica was given a "Nurse Jessica" badge by staff at Lincoln to help out on the NICU ward where her little siblings stayed for six weeks.

On 15 July, Sarah's 30th birthday, she was able to hold both twins for the first time together and on 14 August they were finally allowed home.

Sarah said: "Staff at both hospitals were absolutely amazing and we feel incredibly lucky as a family. We've had a few health  hiccups since their birth, but considering what they've been through they're doing amazingly well. I'm so happy we can have a family Christmas together now everyone is healthy and at home."

A total of nine fetal medicine  centres are part of Tamba's TTTS Registry, including Birmingham Women's Hospital. The first of its kind in the UK, the Registry will gather information on TTTS families so they can do further research and analysis into the condition.

Consultant in fetal medicine at Birmingham Women's Hospital Professor Mark Kilby, who performed Sarah's laser ablation, said: "TTTS is one of those conditions that we are constantly learning new things about. We will be interested to see what the data can tell us – we will use it as a learning tool so we can see what the best protocols are for different circumstances.

"Whenever we receive a new TTTS mother we always explain to her the role of the Registry before we enter her data into it. Patients  are very supportive and more than happy to take part. They know they're helping future families diagnosed with TTTS.

"A lot of the families I have performed laser ablation on will return when their babies are born to show me how they're getting on. The best part of the job is seeing a mother return with her healthy babies."

Tamba (Twins and Multiple Births Association) is also keen to expand the project and see the Registry rolled out to other hospitals which perform maternity and neonatal services.

Keith Reed, Tamba's CEO, said: "Although we've had a great first year and we are really pleased with the number of fetal medicine centres using the Registry, we are still only skimming the surface in terms of the data we could potentially be collecting.

"In order to build the best possible picture of TTTS cases in the UK, and help see which treatments offer the best possible outcomes, we need more hospitals with fetal medicine departments to sign up."

The Registry includes details such as the gestational age at diagnosis and the weight of the babies and their outcomes, so doctors can see what the best practices are and why. It can also be used by doctors to compare cases, so they can see how other twins in similar situations were treated and what happened to them.

But the Registry needs funds in order to continue, which is where your audience and readers can help. To support it visit www.justgiving.com/fundraising/tttsappeal


Source: LincolnshireLive



Parents Thank Hospital 'miracle workers' after Surgery on Unborn Twins

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