Texas Children’s Fetal Center staff saves Louisiana twins with TTTS

May 20, 2014

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Eva and Jay Heintz were enjoying a blissfully uneventful twin pregnancy in Hammond, LA, when their world was turned upside down at Eva’s 19-week check-up.

Her MFM specialist detected polyhydramnios in one twin’s sac and oligohydramnios in the other twin’s sac and quickly made the diagnosis of Twin-Twin Transfusion Syndrome (TTTS). From there, the bad news kept coming. Even though Eva’s ultrasound had been normal just two weeks earlier, the disease had progressed rapidly to an advanced stage of TTTS, (Stage 3) which involved cardiac Doppler abnormalities with selective intrauterine growth restriction. Action needed to be taken quickly if there was any hope of saving Eva’s twins.

Her MFM called Texas Children’s Fetal Center with a referral, and by the time she arrived home from her doctor’s appointment, Jayme Molohon, the nurse coordinator at Texas Children’s Fetal Center who received Eva’s case, had already started to make arrangements for Eva to be seen in Texas the next day.

“The nurses simply could not have been more warm and comforting as I prepared for my surgery,” said Eva.

“Once a referral comes through the Fetal Center, we try to get these patients in as quickly as possible due to the nature of the disease,” said Molohon. My relationship with the family starts with the first phone call I make to introduce myself. You can almost feel their anxiety and fear through the phone because you know they just want someone to help their child. My job is to make these families and patients as comfortable as possible and see that they understand their reasoning for coming all the way to Houston.”

But her role as a nurse coordinator extends far beyond that first call. Prepping for surgery involves a comprehensive initial evaluation. Patients like Eva start with an initial anatomy ultrasound, fetal echocardiogram, genetic counseling MFM consultation and fetal intervention consultation. The entire team on the fourth floor of the Pavilion for Women is a part of the patient’s evaluation. If babies meet criteria for surgery, the patient will meet with pre-anesthesia testing and possibly neonatology, if of viable gestational age. The nurse coordinator is then in charge of scheduling all appointments, verifying insurance authorization and also assisting in housing, if the patient has limited means. She also reviews all prenatal records and obtains any additional records depending on maternal conditions. And according to Molohon, one of her most important roles is to offer the family hope and the knowledge that the Fetal Center staff will fight for them.

“I am with the patient and their family every step of the way,” she said. “I develop relationships with patients that go beyond the fetal surgery. All my patients touch my heart in some shape or form. We experience a bond that can never be shared with anyone else. You may not be related to them by blood, but they will never forget how much of an impact you made in their lives and their children’s lives.

Eva underwent laser ablation surgery led by Dr. Alireza Shamshirsaz – a procedure that is still rare in other hospitals, but has become routine at Texas Children’s where the Fetal Center sees TTTS cases every week. Eva’s surgery was a success, but she still wasn’t in the clear.

“The families that go through fetal intervention always understand there is a risk that their children may not make it after surgery,” said Molohon.

After the procedure, doctors explained that the next important step would be surviving the night after surgery. At 6 a.m. the next morning, a team of doctors entered Eva’s room for the important evaluation – and looks of joy were exchanged as they found two heartbeats.

“When I found out that both babies were alive and made it through surgery, I said a prayer,” said Molohon. “Life is so precious and you always want the best possible outcome for these patients. Eva was such an amazing patient and wanted to do everything right to make sure her babies were okay. To see pictures of her twins now and how beautiful they are makes you appreciate all the hard work and dedication that we do every day in the Fetal Center.”

Eva’s story is a prime example of the high level of care that goes into TTTS cases at Texas Children’s Fetal Center.

“I saw and felt what it is like to have doctors invest themselves in, not only your outcome, but in your future and the future of your family, said Eva. “It felt so personal and special, and I will never forget that feeling. Through all the exhaustion and ultimately joy that this experience has brought me, I often reflect of my time at Texas Children’s Hospital.”