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Survivor Stories
 
Jodi's TTTS Journey 

Jody had a unique situation. She works at SSM Cardinal Glennon Children’s Medical Center, and also became a patient in the St. Louis Fetal Care Institute. When she was 20 weeks pregnant with her twin boys, Jodi found out they were suffering from Twin to Twin Transfusion Syndrome (TTTS). With a two-year-old little girl at home in O’Fallon, IL., Jodi and her husband Marc struggled with the loss of one of their sons, and the blessing of a healthy little boy.

How did you find out about the TTTS diagnosis?

We were expecting twins and had to go to St. Mary's for our in depth 20-week ultrasound.

What was your first reaction when you found out?

We were both pretty scared and had a lot of questions. It was a whirlwind because neither of us expected anything to be wrong.

How did you end up working with the team at the St. Louis Fetal Care Institute?

It was determined at the 20-week ultrasound that I had Twin to Twin Transfusion Syndrome (TTTS) and needed to be watched closely. They also informed us we would possibly have fetal laser surgery to correct this problem. The ultrasound technician made a phone call right away to the nurse coordinator and from there I was followed by The Fetal Care Institute.

What was your course of treatment?

On my first visit to The Fetal Care Institute the team decided that I needed to have the fetal laser surgery right away, so shortly thereafter I had the surgery to divide the blood flow between the twins. I had fetal echocardiograms on the babies before and after surgery.

After surgery, I continued to have weekly ultrasounds. I also had two fetal MRIs during the course of the pregnancy.

Tell us about your pregnancy.
My pregnancy was a bit of a roller coaster. It all started with the very exciting and shocking news that we were expecting twins! When I went for my 20-week ultrasound, I had been pretty uncomfortable the few weeks prior due to increased amniotic fluid, which was caused by the TTTS.

With the diagnosis, and then surgery right after, it was turning out to be a much bigger ordeal than originally anticipated. The surgery went well, and the TTTS seemed to be gone, but four weeks after my surgery, we found out that one of the babies had passed. This was absolutely devastating. Our whole world had been planned around bringing these two beautiful boys into our lives; we had worked so hard and gone through so much to make that happen. We even had a whole team working on it.

After that news, we continued to make weekly visits to The Fetal Care Institute for ultrasounds and watched Samuel very closely. On top of everything else, I ended up being diagnosed with gestational diabetes. At 33 weeks, my water broke and I was admitted to the hospital. Samuel was born three days later.

Tell us about the birth of your babies.

I was hospitalized at 33 weeks 2 days. The doctors put me on a continuous Magnesium Sulfate infusion and gave me a medication to help Sam's lungs mature. After three days, the infusion was stopped in the late afternoon. I started having strong contractions around 7 p.m. that evening. I eventually ended up in labor and delivery and was soon transported to the operating room where I had Samuel at 9:29 p.m. and Elijah at 9:31 p.m. The deliveries were very fast and peaceful.

Everyone treated us with respect and dignity during this very bittersweet moment. Samuel was very strong and did not require any ventilator support; he weighed in at 5 lbs. 3oz. He had a 10-day stay in the NICU for growth and nutrition.

We were able to see Elijah with Dr. Vlastos, who took time to explain his anatomy and show us everything about our baby boy.

How did you explain the situation to your young daughter?

Our daughter, Paige, was just two years old when I was pregnant and we had just started telling her that mommy had two babies in her belly. On Christmas Eve, when I was in the hospital for my surgery, we explained to her that I needed to be in the hospital to take care of her brothers.

After Elijah passed away, we told her that he became an angel and was watching over us in heaven. The biggest challenge was and still is now trying to explain a very difficult concept on "kid terms" without scaring her. It is hard to not show emotions with your children, so she knew every time I was sad and I would explain that I missed Elijah. She is actually a huge part of helping me cope and heal.

Tell us about little Samuel.

Samuel is 2 years old now and is developing such a personality! One would never know that he started out in the NICU as a preemie. He is a great eater and very happy most of the time. Sam blows kisses and likes music a lot.

What did you find most helpful through your journey?

Marc and I both felt the constant support of the The Fetal Care Institute staff and consistency of the caregivers was exceptional---like none other. Phone calls from the nurse coordinator, Katie, and the Footprints staff provided much needed comfort and definitely put our minds at ease. Dr. Vlastos was always very patient and understanding. He made everything we had gone through bearable and made us feel like we were never alone on this journey.

What did you learn from this experience?

There are so many things I learned from this whole experience. I learned to take one day at a time and cherish every moment with my family. In the end, they are all that matter. Dr. Vlastos taught me to breathe every day and take in life's journey--to ride the "waves of life".

Most importantly, I learned that our hospital's mission is evident and alive in the works of the St. Louis Fetal Care Institute. They all took care of me and my family in ways that no one could ever do. All of them: physicians, nurses, clerical staff and sonographers remain part of our "family" and we can never thank them enough for everything they did for us.


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