TTTS Signs and Symptoms: Stephanie's Journey

TTTS Signs and Symptoms

Finding out that you’re pregnant with twins can be overwhelming. It’s hard to know what to expect or even what questions to ask your doctor. The two most important things you can do are ask if your twins share a placenta and what TTTS signs.

While Twin to Twin Transfusion Syndrome is rare, it’s always important to be educated. Asking about TTTS signs will not cause you to have the syndrome. However, it may just save your babies’ lives.

Today, I’m honored to share Stephanie’s journey with TTTS. I met Stephanie through a support group. She also supports the Twin to Twin Transfusion Syndrome Foundation and does many fundraisers.

After you read about Stephanie and her beautiful daughters, I will share some TTTS signs and symptoms that every women pregnant with twins (that share a placenta) should know about.

Please meet Alexis and Destiny, as told by their amazing mom Stephanie.

1.Tell us about your twins.

My TTTS survivors were born on April 22, 2013, at 36 weeks 4 days by c section. Baby A, my recipient baby, (Alexis Lee) was born weighing 5 pounds 5 ounces and 17 inches long. Baby B, my donor twin, (Destiny Sky) was born weighing 4 pounds 13 ounces and 17 inches long. They were sent to the NICU for what ended up being a 24 hour watch. Alexis’s blood sugar was high so she had IV. Otherwise both girls were happy, healthy babies. They came home 3 days later with me after I was released from West Penn Hospital.

2.When did you find out you were having twins?

I had found out I was pregnant on September 11, 2012 while vacationing in the poconos for my anniversary. I went for my first sonogram at 8 weeks, and at first, they didn’t see both babies. After a long time of doing my sonogram, they saw them both. They were both in the same position, just facing each other, so one was looking up and the other was looking down.

When did you get your TTTS diagnosis?

Everything was seemingly normal up until my sonogram to find out the sex of my babies (around 18 weeks), on January 3, 2013. I went in for my monthly sonogram to find out that baby A had too much fluid, and baby B didn’t have any fluid. My obgyn I was seeing at the time suggested I see a specialist, but they suggested a genetic specialist, not the high risk doctor I actually needed.

I went later that week to see the genetic specialist, but was given a sonogram before I was to see him at West Penn Hospital. My sonogram technician, Valerie, knew immediately what was wrong and told me that I needed to see the high risk doctor who was normally off that day, but happened to be there by some twist of fate.

3.Tell us about your pregnancy.

I saw Dr. Caine who diagnosed me with TTTS, and he wanted me to see a specialist at Magee Women’s Hospital of Pittsburgh. I got an appointment for 2 days later with Dr. Stephen Emery at Magee.

He diagnosed me with Stage 3 (D) TTTS and gave me my options. Laser ablation was the last option (and in my opinion the ONLY option I had) to try and save my girls. I was scheduled to have surgery on January 10, 2013. They also did an amnio reduction on me for baby A, where they took 6 pounds of fluid.

I stayed in the hospital overnight and was given another sonogram in the morning. Baby B went from having no fluid at all and a collapsed bladder to starting to make her own fluid again. I was put on partial bed rest at this point until I had my girls. I was told at least 4 hours of laying down a day on top of what I was sleeping.

From that point on, I made weekly trips back and forth from home to the hospital to have in depth sonograms done to check on my girls. Thankfully, it wasn’t that far of a drive, about an hour each way.

The Delivery

Everything was going well up until February 14, 2013, where it seemed as though the fluid levels had swapped. My doctor at West Penn called my surgeon and was advised to have me come back in a week and do a recheck. Little did I know my doctor was thinking of delivering my girls right then and there!! I’m so glad he called my surgeon first!!

The next week when I went back, the fluid had somehow normalized.

I was scheduled to be induced on April 19, 2013. I went for my sonogram the day before I was to be admitted to the hospital, and both of my babies were breech. The doctors told me there was a 2% chance if I delivered vaginally that I would kill baby b. I wasn’t willing to take that chance after fighting SO hard for them both to be here with us. So, I was scheduled for a c section on April 22, 2013.

5. What advice would you give to a newly pregnant mother of multiples?

If I could give some advice to any parents who find out they are pregnant with twins or more, no matter how good or how experienced you feel your Obgyn is, PLEASE go see a specialist! So many doctors don’t know about TTTS or miss signs for it.

Up until I was diagnosed I had NO idea what TTTS was, so I didn’t know the signs to be looking for.

According to my obgyn, my girls were fraternal because they were in separate sacs. Had I know what the signs of TTTS were before I was diagnosed, I could have probably been diagnosed 2 months prior to when I was. I was showing all the signs of TTTS, but when I told my obgyn he told me those were normal complaints of all pregnant women. Who was I to know any different? This was my first pregnancy, so I didn’t have anything to compare it to.

I am beyond thankful that I have 2 happy and healthy now 5 and a half year old little girls.