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Saving lives, supporting families

Our Experience of TTTS

3rd December 2018

Adorable baby twins Poppy and Jessica are looking forward to their first visit from Santa.

The girls arrived home after spending seven weeks in hospital having been born prematurely when mum was diagnosed with the life-threatening TTTS (Twin to Twin Transfusion Syndrome).

Being home for Christmas is the best present for mum and dad Lauren and Philip Jennions from Havant, Portsmouth who wanted to share their remarkable story as part of World TTTS Awareness Day on Friday December 7th.

They also want to encourage people to donate to Tamba’s Research Rocks campaign which funds medical research into preventing prematurity, discovering better treatments for conditions such as TTTS and saving babies’ lives.

Lauren, who has a twin brother, always wanted twins but was shocked when she discovered she was expecting identical babies as there are no genetics involved in this.

“I had never heard of TTTS before, but we were warned about it at the first scan when we were told they were identical,” said Lauren.

Then came the news they dreaded – at the 18-week scan the couple were told there was a slight fluid difference in the amniotic sacks and were immediately referred to St George’s hospital in London.

No action was taken but just four days later Lauren’s tummy had grown significantly bigger and she put on 2kg overnight!

They rushed to their local hospital in Chichester which revealed Stage 2 TTTS. One twin was ‘stuck’ with no visible bladder and had barely any fluid, whereas the other twin had lots of fluid.

Lauren and Philip dropped everything and rushed back to St. George’s that night for laser surgery which was carried out under local anaesthetic. Although frightening, the couple were heartened to be able to watch one of their babies wave to them from inside the womb!

Around 800ml of fluid was drained from twin 2 and once the laser surgery was done the couple faced an agonising wait to see if everything had worked and the twins had survived.

Fortunately, the surgery was a success, but the twins decided to arrive 10 weeks early the day after Lauren had started her maternity leave.

“I was out having a meal to celebrate finishing work and my waters broke in the restaurant,” said Lauren.

“We rushed to hospital and just an hour later I had given birth naturally to Poppy. Four minutes later Jessica arrived looking redder and bigger, which may have been because of the TTTS, we will never know. It could also have been the surgery that caused premature labour, but again we don’t know, which is why research into TTTS is so important by charities like Tamba.”

The girls were taken straight to the neonatal units at Queen Alexandra hospital in Portsmouth, and after ten days were transferred to the Jennions’ local hospital St Richards where they stayed for 40 days.

Lauren said: “After seven stressful weeks we were finally allowed to take them home, but with oxygen because of their immature lungs. This was very scary, and I felt unprepared.

“But once we were at home it quickly becomes normal. It just takes longer to get them ready to go out as you must make sure you have the portable oxygen tanks. 

“We hope now that they will be fully off oxygen by Christmas as they are doing amazingly and now, even though they are three months old, look like newborns.

“They will be behind on numerous development milestones for a year or so because of their prematurity, but all that really matters is our girls our healthy and developing well.

“Through all the stress of the operation and the thought we could have lost them, to spending 50 days in hospital, we have stayed strong and positive for our girls.

“We now have a happy outlook for our future and look forward to many years of double trouble!”  

Related blogs: 

Eve's TTTS Story

Lynsey's TTTS Story

Tracey's Story

Mum's blue light campaign to remember her baby

Photos taken inside the womb show twins in details





 

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