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Saving My Babies: Our twin-to-twin transfusion syndrome story

Felix and Jack TheilWhen I first learned that I was pregnant with identical twins, I was six weeks into the pregnancy. My husband and I were informed shortly afterwards about the potential risks of developing twin-to-twin transfusion syndrome (TTTS). Our doctor told us approximately 10 to 15 percent of twins who share the same placenta develop TTTS. The risk was always there in the back of our minds, but we didn’t dwell on what might happen.

We were referred to the University of Michigan Maternal Fetal Medicine team for high-risk pregnancies. I just figured we were going to receive top-notch prenatal care! Then, at my 16-week check up, the doctor saw signs that TTTS may be developing and immediately sent us for a more in-depth ultrasound.

After some explaining, it was clear that one of the twins was getting larger and was surrounded by more amniotic fluid than the other twin. Essentially, one twin was becoming the donor and one the recipient of vital nutrients and blood-flow. It was my understanding that once the signs of TTTS are present it is very unlikely that the situation will reverse.

Laura Theil & familyFor the next four weeks, I went for ultrasounds one to two times a week to monitor the progression. When I was in my 20th week, the team at University of Michigan’s Fetal Diagnosis and Treatment Center decided it was time to take action. It was an extremely stressful and scary time, and while the U-M doctors didn’t sugar coat the situation, they made sure we understood what was happening and explained to us our options and possible outcomes.

The smaller baby, Jack, was sending more blood to his brother, Felix. If left untreated, we knew it was highly likely that both boys would not survive. The thought was unbearable.

So, at 20 weeks to the day, I had in-utero surgery. Through a tiny incision near my belly button, entering the uterus on the side of the larger twin, Dr. Treadwell and Dr. Mychaliska used a fetoscope with a tiny camera to map the blood vessels on the placenta. Dr. Treadwell, Dr. Mychaliska, and the team of doctors used a laser to ablate the incorrectly formed placental blood vessels. The goal was to even out the blood flow so both babies would receive sufficient blood flow and nutrients needed to sustain growth. Following the ablation step, Dr. Treadwell then removed two liters of amniotic fluid that had pooled around Felix. She informed me after the surgery that 37 connections were ablated, which was more than she had ever seen during this type of procedure.

Felix and Jack TheilAfter the surgery, there was another ultrasound of each baby’s heart and surrounding amniotic fluid sacs. Things were looking very positive and I was able to go home the day after surgery. We were closely monitored for the rest of my pregnancy with weekly ultrasound appointments. It was a very stressful time, but we knew we were in the best of hands with our medical team. I refrained from my regular activities and my job for the next month, but soon I was feeling really well and begged my doctors to let me return to work for a while to take my mind off things. I’m a nurse in the endoscopy unit at a local hospital and was able to go back to work for a couple of months before the boys were born.

Every week that passed following the successful surgery seemed like a huge milestone. Jack remained small throughout and slower to grow then Felix, and Felix progressed much like a singleton would have. At nearly 33 weeks, the doctors decided that due to the position of the twins and Jack’s slow growth, it was time for the boys to be born.

Felix and Jack TheilI had a c-section at 34 weeks. Their birthday was filled with so much anticipation and joy. Jack was born weighing 3 lbs. 12 oz. and Felix was 5 lbs. 3 oz. Although they were delivered early, they were healthy and we were so relieved. After they were both able to maintain their body temperature and steadily gain weight, we were able to bring them home. Felix came home after two weeks, and Jack came home a week later.

At nearly six-months-old, Jack is still the smaller of the two by three to four pounds, but they both appear to be healthy with no developmental delays. Jack is feisty and determined, which just might be due to his place in the womb. Felix tends to be more relaxed. They indeed have their own personalities. It’s truly a joy to watch their connection and how they interact together. Jack is quickly calmed when he’s near Felix.

The entire experience was stressful and uncertain.  My husband Michael and I are so grateful that we live close enough to Ann Arbor.  We had a team of experts treating us throughout my pregnancy and then caring for the babies after they were born. Everyday with Jack and Felix is a gift. Their smiles and giggles are worth everything.

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Laura Theil RNLaura Thiel is a registered nurse, wife and mother to twins Felix and Jack. She and her family live in Grosse Pointe, Michigan.

 

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” in 2014, and among the 10 best children’s hospitals in the nation by Parents Magazine.

 

 

university of michigan women's hospitalUniversity of Michigan Von Voigtlander Women’s Hospital opened in December 2011, offering women a state-of-the-art place to welcome their babies to the world in the most caring and comfortable way possible.  From private rooms to birthing tubs, each feature was designed around mom and baby’s every need.  Learn more at www.UofMhealth.org/birthcenter.