Twin To Twin Transfusion Syndrome (TTTS) Survivor

My name is Nancy Reyes. I have beautiful 5 year old twin girls who survived twin to twin transfusion syndrome (TTTS). I was 20 when my doctor called me letting me know there was something wrong with my pregnancy. I was around three months and had blood drawn and an ultrasound showed only one baby. The results from the blood were so high that I went to see a specialist.

I remember as if it was yesterday being told I was going to have a baby with down syndrome (they didn’t know I was carrying twins) and having counseling that day.  Our options were to keep the baby with its special needs or to have an abortion.

It was such a hard time for my husband and me, we already had a three-year old boy. We were taken that day for another ultrasound to get an actual look to see what was wrong to our baby. Soon enough the blood results changed.  We were carrying twin girls. Everything was suddenly so different. From being told we had a down syndrome baby to having twins! Shocking! that is all I can say. We learned that our twins had TTTS.  Being young and Hispanic, I didn’t really realize what twin to twin syndrome meant. I just knew that I had two precious babies inside me and they needed me to be strong. I had to take care of myself and them.

At four months I stopped working to be on complete bed rest. My doctor and nurses were wonderful. They explained a lot to me but it was so hard to understand at that time and to be honest, almost six years later I am realizing how lucky I am to have my girls by my side. Not everything was all beautiful. My pregnancy was very difficult. I had excess amnio fluid removed twice from the receiver, making the possibility of a miscarriage even higher. Their heartbeats at times would be real great, but there was the possibility of having them early. I thank God for letting me carry them for nine months.

I was really lucky. My girls were due on January 1st, but they were born December 24, 2000, Ruby 5lbs11oz and Melissa 4lbs2oz, Ruby’s heartbeat was dropping so my delivery was induced, all the pain and suffering was worth it. I can honestly say I would do it again to have my girls with me like I do now.

Weeks after birth their birth they contracted RSV virus, not once but twice. It has been a rough journey, but I am enjoying every single day. I never realized how lucky I was, especially not knowing what TTTS was and how severely the girls had it. I thank God and I am so glad we are survivors of this disease. I wish the best to everyone who is carrying this disease, take it easy and pray that everything should be okay.

Nancy, Ruby & Melissa

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