Twin girls with rare blood-sharing disorder in the womb are thriving – Daily Mail

California schoolteacher Brittany Bruley was elated when she discovered she was expecting her first child earlier this year – and shocked a few weeks later at Easter time when an ultrasound revealed she was carrying twins. 

Multiples don’t run in either her family or her husband’s, and the babies were conceived naturally.

She waited until she got home to surprise her husband, Mike, with an Easter-themed reveal.

‘I bought a golden egg, and I put all the candies that come in twos in it – then I put a little note in there when I gave it to him. I came home that day and said, ‘The best things come in twos. We’re having twins!’

Within weeks, however, that joy turned to worry. Brittany, 32, learned the pregnancy was affected by twin-to-twin transfusion syndrome, which can occur with identical twins or higher multiples who share placenta. 

Riley (left) and Sheah (right) Bruley were struck by twin to twin transfusion syndrome, meaning that their blood vessels in the womb were interconnected, delivering far more blood and nutrients to Shea than to Riley, who was born just over a third her sister's size

Riley (left) and Sheah (right) Bruley were struck by twin to twin transfusion syndrome, meaning that their blood vessels in the womb were interconnected, delivering far more blood and nutrients to Shea than to Riley, who was born just over a third her sister's size

Riley (left) and Sheah (right) Bruley were struck by twin to twin transfusion syndrome, meaning that their blood vessels in the womb were interconnected, delivering far more blood and nutrients to Shea than to Riley, who was born just over a third her sister’s size 

The shared placenta contains abnormal blood vessels which connect the umbilical cords, and blood and nutrients can be distributed unequally between the babies.

Often there is a donor twin and a recipient, leaving one twin with decreased blood volume and slower than normal growth. 

The recipient twin can also face challenges, receiving so much blood that it becomes overloaded and its heart can become strained. 

It may also be surrounded by too much amniotic fluid, a condition that can cause the fetus to shift to a dangerous position, develop abnormally and even prove fatal. 

Brittany was monitored carefully, twice a week. 

Her babies were indeed donor and recipient, with one significantly larger than the other. When she and Mike learned the TTTS diagnosis, they knew the risks and decided to name the babies with their uphill battle in mind. 

‘The little one, we wanted to give her a name that had special meaning – and Riley means courageous,’ she says. ‘So we picked that name for her, and then Shea, we just loved the name and it also has to do with fairies and castles … I love fairies and wishing and hoping.’ 

Shea (left) and Riley (right) are the best holiday gifts their parents could have asked for after a harrowing development in the same placenta and sharing a blood supply

Shea (left) and Riley (right) are the best holiday gifts their parents could have asked for after a harrowing development in the same placenta and sharing a blood supply

Shea (left) and Riley (right) are the best holiday gifts their parents could have asked for after a harrowing development in the same placenta and sharing a blood supply 

Without treatment, the twins' chances of survival may have dipped as low as 10% - but instead, they celebrated their first Christmas at home with their parents

Without treatment, the twins' chances of survival may have dipped as low as 10% - but instead, they celebrated their first Christmas at home with their parents

Without treatment, the twins’ chances of survival may have dipped as low as 10% – but instead, they celebrated their first Christmas at home with their parents 

They were clinging to that hope, and prayer, but monitoring soon revealed that the syndrome was becoming increasingly severe.

‘It was my last day of work, the last day of the school year, and I went in for my ultrasound and I went with my mom,’ Brittany tells DailyMail.com. 

‘They told me that, basically, the little baby…was being suffocated. The amniotic sac was just tight around her, kind of like cellophane – and she had no room to move, no room to get anything.’

There are four stages of TTTS; the Bruleys were originally told their case looked like stage two or three, and they should consult a specialist in Los Angeles who performs the rare fetal laser surgery to separate the babies and hopefully save them by redistribution of blood and nutrients.

Dr Ramen Chmait of the University of Southern California’s Keck School of Medicine agreed to see them the same day he received the request and did his own ultrasound and tests.

‘He deemed that it was stage four, and he said we had three options,’ Brittany recalls. 

Doctors told Brittany and Mike that the smaller baby, Riley (pictured), would have only a 50 percent chance of survival if Brittany underwent surgery to separate the babies' blood supply

Doctors told Brittany and Mike that the smaller baby, Riley (pictured), would have only a 50 percent chance of survival if Brittany underwent surgery to separate the babies' blood supply

Doctors told Brittany and Mike that the smaller baby, Riley (pictured), would have only a 50 percent chance of survival if Brittany underwent surgery to separate the babies’ blood supply

‘He said: ‘You can terminate the pregnancy entirely, you can cut off the small one, but I don’t do that.”

‘So he was never going to offer us that, he would just tell us a place we could go. Or we could have the surgery, but know that it was not a guarantee, that was going to be, he thought, about 90 percent for the big one and 50 percent for the small one. 

‘And then he did say…because they are identical twins, there is always the chance that he if missed a blood vessel, they could both die.’

But foregoing surgery would mean the twins would have even lower chances of survival – as low as 10 to 15 percent.  

‘It was really demoralizing and awful, however we always only ever had one option in our heads, so the other choices weren’t really considered by us,’ Brittany says.   

‘We were determined to keep the two. I mean, a 50 percent chance, it’s like a flip of a coin. It could happen, and it did end up happening.’

The Bruleys met with Dr Chmait on a Friday and he operated the following Monday.

Brittany (pictured), Mike and their medical team were determined to do everything they could to give both twins the best shot at survival they could

Brittany (pictured), Mike and their medical team were determined to do everything they could to give both twins the best shot at survival they could

Mike (pictured) and Brittany decided to go ahead with the surgery, and doctors successfully separated the blood supply shared by Riley (left) and Shea (right)

Mike (pictured) and Brittany decided to go ahead with the surgery, and doctors successfully separated the blood supply shared by Riley (left) and Shea (right)

Brittany (left), Mike (right) and their medical team were determined to do everything they could to give both twins the best shot at survival they could. They decided to go ahead with the surgery, and doctors successfully separated the blood supply shared by Riley (pictured right of left picture and left of right) and Shea 

‘I remember going in for the surgery that day was super stressful, sad, everyone was crying,’ Brittany says. 

‘My parents were crying, Mike was crying.

‘And I just remember when I got into the surgery room. I wasn’t put out. I was awake. And he brought like this TV over so I could actually see him doing the procedure. And just hearing him in the operating room, I felt so confident in him because of his confidence.

‘He was amazing and he was not screwing around. He was so precise and so direct. I could hear him saying, “OK, I’ve got check it” and he was checking again and again. He was checking that he got every single vessel he could see. I remember him saying: “I’m 99 percent positive that I got them all.”‘ 

After surgery to treat TTTS, the medical team watches for the fetuses to hit a series of milestones. 

First, the team had to make sure the babies survived 24 hours after the trauma of surgery and the delicate detachment of their shared blood vessels.  

‘So for that whole night, it was just terrifying and awful and worrisome. They come in with the ultrasound, and you’re just hoping to God that they see two heartbeats. It’s like the worst, scariest feeling in the world,’ Brittany recalls.  

When the twins were first delivered, Brittany says she heard Shea's cry loud and clear - but it took a moment before Riley (pictured) made her first tiny sounds

When the twins were first delivered, Brittany says she heard Shea's cry loud and clear - but it took a moment before Riley (pictured) made her first tiny sounds

When the twins were first delivered, Brittany says she heard Shea’s cry loud and clear – but it took a moment before Riley (pictured) made her first tiny sounds 

Both babies were whisked quickly to the NICU, but Riley had to stay there much longer, with a total hospital stay of 72 days

Both babies were whisked quickly to the NICU, but Riley had to stay there much longer, with a total hospital stay of 72 days

Both babies were whisked quickly to the NICU, but Riley had to stay there much longer, with a total hospital stay of 72 days 

‘The nurse who had checked it said the fluid was better than it had been already, and normally that takes a long time – so they thought that was a really good sign.’ 

Brittany was sent home on bed rest, but had to resume her twice-a-week monitoring schedule.   

‘They were doing all kinds of tests every time; they were checking blood flow to the placenta, blood flow to the brain, what type of heart rates they had, all of that.

‘Every time I went, it was this fear of: Is she alive or not? Are they both alive or not? Because it could change, even though they survived that first night. 

‘It was a week by week basis. It was pretty terrible; I don’t think anybody really will ever understand it.’

As Brittany spent the summer on bedrest – lazing in the backyard and naming hummingbirds out of boredom and worry – twice-weekly tests would prove that the babies were far from out of the woods yet. 

The laser surgery had revealed she also had intra uterine growth restriction, a condition that meant Riley was only receiving 20 percent of nutrients to Shea’s 80.

‘Most people don’t have both at the same time,’ Brittany says. 

‘[Dr Chmait] explained how it just meant that where the baby implanted herself in me was beyond anybody’s control. 

‘It’s just where she latched inside me, where her cord was. She just did not have much real estate, is how he described it. The big one was right nice in the middle of the placenta – prime real estate, and she’s getting everything and has all this room. 

‘And little girl does not have much room in her little sac and not much nutrients.’

Despite the odds and additional complications she faced, Riley started gaining strength

Despite the odds and additional complications she faced, Riley started gaining strength

Soon, she was catching up to her sister Shea's (pictured) size, though she's still smaller today

Soon, she was catching up to her sister Shea's (pictured) size, though she's still smaller today

Despite the odds and additional complications she faced, Riley (left) started gaining strength. Soon, she was catching up to her sister Shea’s (right) size, though she’s still smaller today

On top of that worry, at 25 weeks the Bruleys were told that Riley suffered from hydrops, a life-threatening condition of fluid buildup around the organs. She was only 400g at the time. 

Hydrops was once a common complications of other fetal diseases, but these days it’s relatively rare, affecting about one in every 1,000 births. 

But it’s no less dangerous. Only about half of unborn babies that develop hydrops survive.  

‘We were told that because she had reverse blood flow and because she had hydrops, basically she was going to die within 10 days, was their estimate. So basically I spent the week waiting for her death,’ Brittany says. 

‘Every time when I was waiting to see if she was there, I could feel this tiny little kick. She had a very different kick than her sister. Her sister was super strong; you could see her moving around like crazy. And I loved that, and I would sing to them and I would talk to them. 

‘But when I would get worried that the little one wasn’t there anymore, she would always give me this tiny little…I’d feel this little flutter.

‘I would rub my belly on that side where I felt it and I’d say: ‘I’m here, I feel you.’

Now, four months after their birth at 31 weeks, both Riley (left) and Shea (right) are thriving

Now, four months after their birth at 31 weeks, both Riley (left) and Shea (right) are thriving

Now, four months after their birth at 31 weeks, both Riley (left) and Shea (right) are thriving 

With the myriad complications in the pregnancy, doctors offered Brittany and Miker the option to deliver at 25 weeks, in the hopes that this would improve Shea’s survival odds and, to a lesser extent, Riley’s. 

But the Bruley’s wanted to give both girls as long as possible to develop in utero.  

Brittany made it to 31 weeks and 4 days. The babies were born September 8.

‘Shea was the big one; she came first, because she was lower and we did hear her crying pretty immediately – so that was a relief,’ Brittany says. 

When Riley was delivered, however: ‘It was silent for a long time. We’re crying behind the screens, because we can’t see anything and we can’t hear anything – and then we just hear this itty, bitty little squeak of a cry.’

Both babies were whisked away to the NICU; Shea weighed 4.1 pounds while Riley was only 1.5. Riley ended up spending 72 days in the hospital while Shea was out after 32.

It’s been a long and difficult road since the babies were born; both girls now are home and undergoing physical therapy and treatment, but despite all odds, Riley is growing and thriving and looking gorgeous in family Christmas photos.  

Brittany’s pregnancy was not only harrowing but costly. The Bruley’s are grateful to have their babies home and friends have started a GoFundMe to help the family cover the expenses of saving the twins’ lives.  

The girls are growing and thriving. Shea is now 10.6 pounds and 21 inches long; Riley is 6.6 pounds and 17.5 inches long.

She credits the doctors and their conscientious monitoring and commitment for saving her babies with TTTS, which she wasn’t even unaware of and which most people don’t understand, Brittany says – especially the severity of the condition.

‘The more people know about it, at least you could advocate for yourself. If you didn’t have a specialist, at that point if you had twins, if you just had a regular OB, they might not be as conscious about it.

‘So if you’re educated about knowing, yeah, I have identical twins, I could potentially get this, then you can self-advocate,’ she says. 

‘Say, hey, I want to be monitored more, checked more because of this – and then they can catch it early. And if they catch it early, then they can intervene and you can have that surgery.’

As for her own little family, Brittany says: ‘I have a really hard time sometimes when I’m holding them. I just cry, because I didn’t think I was going to get them.’

 

 

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