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Twin to Twin Transfusion Syndrome: What one mom wishes she'd known

I remember feeling so lucky and excited when the ultrasound tech said “You know there’s two babies in there, right?” I couldn’t believe it, but we were expecting identical twin girls.

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Twin-To-Twin Transfusion Syndrome: Moms join together to raise awareness

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Twin-To-Twin Transfusion Syndrome: Moms join together to raise awareness

Play Video - 3:21

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The doctors explained that this was a high-risk pregnancy and that we would need to be monitored more closely, but that everything was looking good. They told us that our pregnancy was Monochorionic-diamniotic, which is where the babies share a placenta but have their own amniotic sacs.

Courtesy Jami Cavanagh
Jami Cavanagh, 30, with daughters Kaylee, 4, and Khloe, 1. Jami lost their twin sisters to Twin to Twin Transfusion Syndrome, a little understood pregnancy condition that can be fatal.

Three days after our 20-week scan showed two perfect baby girls, we lost Ella. I knew something was wrong when I hadn’t felt them move after eating a hefty breakfast and lunch, so I immediately went to the doctor.

Hearing the ultrasound tech say “I’m sorry, but Twin B has no heartbeat” shattered my entire existence.

Jami Cavanagh
This 20-week ultrasound shows Jami Cavanagh's twins, perfectly healthy and holding hands. Three days later, Twin To Twin Transfusion Syndrome claimed one twin's life and left the other in critical condition.

My husband held me and we cried together while we waited for the doctor to come review the results. The doctor explained that our twins had acute Twin to Twin Transfusion Syndrome, which is a sudden onset of a disease I’d never even heard of.

Twin to Twin Transfusion Syndrome (TTTS) happens when the blood flows unequally in the womb between twins that share a placenta, depriving one twin of blood. According to the Children’s Hospital of Philadelphia it happens in about 15 percent of monochorionic-diamniotic twin pregnancies.

Ella was the donor twin, meaning that she passed all of her blood and fluid to Stella, and she died during what doctors called the “event.” The doctor went onto explain that Stella, our recipient, was in heart failure and could have brain damage. The potential brain damage would only detectable by using an MRI, and we would have to wait 3-4 weeks to find out.

Courtesy Jami Cavanagh
Jami Cavanagh with her husband Chris and their two children; after losing twins to Twin to Twin Transfusion Syndrome, Jami is trying to educate other moms about the warning signs.

The next four weeks I entered into the greatest battle I have ever faced to save Stella’s life. It was me and her against the world. She fought so hard and I fought for her every step of the way. We were so hopeful, but then we received the results of the MRI. While Stella’s body fully recovered from the “event,” her brain did not. They told us that the MRI results were some of the worst they had seen, and that there was just too much damage for Stella to recover.

How could I lose her too? We were absolutely crushed. Again. At 24 weeks into my pregnancy I did the impossible and delivered both Ella and Stella. We got to see them, love them, talk to them and say our hellos… and then, too quickly, our goodbyes.

Courtesy Jami Cavanagh
Jami holds Ella and Stella, her twin daughters who died from Twin to Twin Transfusion Syndrome, in the funeral home.

Twin to Twin Transfusion Syndrome is an unpredictable disease that few pregnant women know about. It affects over 6,000 babies a year and if left untreated it has a 90 percent fatality rate. (By comparison, SIDS kills 2,500 babies a year.) With TTTS, time is of the essence – this disease can move very quickly.

Outside of detecting the disease in an ultrasound, the only physical symptom that a mom can experience is a sudden increase in abdominal size. It can happen overnight, or over a week. (When it happened to me, I just figured it was typical of a twin pregnancy – it wasn’t.) If this happens, it’s often accompanied by pain that doesn’t go away, shortness of breathing and trouble walking, and the mother should be seen immediately for an ultrasound.

I couldn’t save my babies and I wish with every bone in my body that things like this didn’t happen. No one case of Twin to Twin Transfusion Syndrome is alike and I strongly encourage anyone expecting twins that share a placenta to learn more about it. It’s been 6 weeks since I said goodbye to Ella and Stella, and I think of them every day. I hope sharing their story will help another mother avoid the heartbreak I’ve gone through.

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