Molly's Kids: Ever heard of TTTS? A syndrome that affects twins? - | WBTV Charlotte

Molly's Kids: Ever heard of TTTS? A syndrome that affects twins? We hadn't either

CHARLOTTE, NC (WBTV) -

"Better late than never."

That's my thought on writing this now.  I should've posted it a week ago.  December 7th was World TTTS Awareness Day.  Once you read about this disease, you'll understand why I think getting something out about it -- even if a week late -- is important. 

This post started when Tara Gemmell from Huntersville reached out asking if I'd heard of "TTTS." 

I didn't.

It's twin-to-twin transfusion syndrome. Tara had twin girls. You see them here on the left. TTTS can affect identical twin pregnancies.  

"We have a 7-month-old baby girl and her identical twin we refer to as our 'Angel Baby'," Tara said. "I am sending you this note on their behalf."

TTTS means the shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins. The events in pregnancy that lead to TTTS are all random. TTTS is not hereditary. TTTS kills more babies each year than SIDS.

TTTS is what killed one of Tara's baby girls. 

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Tara says she and her husband found out they were pregnant with twins in December of 2014. The doctor informed them about TTTS and Tara started weekly ultrasounds. 

In March, they were told the TTTS had progressed to Stage 3; Tara went into surgery the next morning to correct the disease.  Laser ablation surgery was intended to separate the placenta so each baby could have their own "piece" and no longer share a blood supply. 

Only, it didn't get fully separated and two weeks later, an ultrasound determined the recipient twin was showing signs of heart failure. She held on until 25 weeks at which point the doctor scheduled an emergency c-section to try to save the donor twin.  This was necessary.  With the girls still sharing a placenta, if one would have passed the other would have too.

Both girls were born on April 28th, 2015. The picture you see here of the two of them is the only one Tara has with both alive.

"We had 48 glorious minutes with Kensington before she received her angel wings," Tara wrote. "Kylie Grace spent the next 91 days at Levine Children's Hospital fighting for her life. We are blessed to now have Kylie home and thriving -- you can see how far she has come -- but we will forever be changed by the loss of our daughter. Kensington is truly our guardian angel."

Oddly enough, Tara says three months before her girls were born, her neighbor in Huntersville was expecting triplets and also underwent laser ablation surgery to correct TTTS.  She delivered all three babies at 26 weeks gestation.  One died a day later, the remaining twins are at home doing well.

"It's a blessing to have someone so close who can understand the pain caused by this horrendous disease and who understands the worries of having a micro preemie," Tara said. "We support each other."

But, Tara said, they still don't feel like people know about TTTS. 

They asked if I'd write about it.

Of course.

Done.

Sorry it's a week late, Tara. Hopefully it still helps.

For more information, go to www.tttsfoundation.org.

#MollysKids

**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**

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