Hayley and Jamie Marek’s journey with twin-to-twin transfusion syndrome began in December 2006 when Hayley found out she was pregnant. This news came at a transitional time in their lives, as they were in the midst of planning a move to a new city and starting new jobs. At that time Hayley was working as a labor and delivery nurse at Evergreen Hospital Medical Center in Kirkland, WA. Working at Evergreen had given Hayley some exposure to TTTS.  She had seen some of the heartbreaking outcomes that can come from TTTS. 

On her last night of work, she ran into her doctor who happened to be at the hospital.  Hayley gave her the news that she was pregnant and would be moving in a couple of days.  Hayley’s doctor offered to give her an ultrasound in her office that night to just check on things and, in her words, “make sure there was only one in there.”  It was exciting to see the baby on ultrasound.  “Things were starting to finally feel real; like we were having a baby.”  Just as the doctor was about to finish the ultrasound, another yolk sac appeared on the screen, followed by another baby…twins!  “This is a moment I will never forget.”  As both a mother and a nurse, Hayley had a flood of emotions.  But with those emotions came some concern.  She knew the risk that a twin pregnancy could carry, and that her and her husband potentially had a difficult journey ahead.

After their move they established prenatal care with two fabulous perinatologists, Dr. Winkler and Dr. Coleman.  They learned they were having identical girls who were sharing the same placenta but were in their own sacs.  At 23-weeks gestation, at a routine appointment, the doctors noticed a slight difference in the fluid levels of the babies.  It was not enough difference to clearly diagnose TTTS, but it definitely put us on alert.  It was decided that Hayley should come back within the next week for a repeat ultrasound. 

Hayley was increasingly more uncomfortable during that week.  It was her first pregnancy, so I didn’t know how much discomfort was normal, especially with two babies.  “I remember getting off of work the day of my follow up doctors appointment and just soaking in the bathtub because of the discomfort in my abdomen and back,” says Hayley. 

That morning at her appointment it was discovered that it was definitely TTTS.  Within the six days since Hayley’s previous appointment, one baby had an abundance of fluid and the other baby had no amniotic fluid and her bladder was no longer visible.  Hayley was scheduled for laser ablation surgery for the following day.   She went back to Evergreen, her former place of employment, for the surgery.  “It was comforting to be in an environment that I was familiar with and surrounded by people I knew were competent and caring.” 

The talented Dr. Martin Walker preformed the laser ablation surgery at 23.6-weeks gestation.  During the surgery, Dr. Walker lasered multiple vessels that the babies had been sharing on the placenta, and drained almost 2 liters of fluid from the recipient baby.  “My abdomen looked like it had deflated after the fluid was removed and the discomfort that I had been experiencing was gone.  I remember the relief I felt when we saw two heartbeats on ultrasound the following morning,” remembers Hayley.  Hayley knew they still had a ways to go, but they had crossed a major hurdle. 

Hayley went home and spent the next week on bed rest, trying to concentrate on growing two healthy babies.  She was briefly able to return to work until she started contracting at about 27-weeks.  The Dr.’s were able to keep the contractions under control with medication.  A couple of weeks later, both babies developed low amniotic fluid levels.  Hayley continued to go in for frequent ultrasounds, only to find the fluid levels just barely hanging on. 

It was decided at 35-weeks gestation that they had made it far enough and the risk of their daughters having such low fluid in utero was not a risk worth taking, especially after everything they had been through.

On July 18, 2007 Jadlyn Claire entered this world at 8:09am, followed by Layla Yvonne. “July 18th held special meaning and hope to our family because the girls would share a birthday with my grandpa who had passed earlier that year,” says Hayley.
 
The girls are now thriving three year olds who just started preschool.  “I am extremely appreciative for the wonderful medical care we received, and the early detection and treatment of TTTS.  We were lucky our story has a happy ending, but as a nurse I have been a part of some family’s journeys that did not experience such outcomes.  I am so grateful for the Fetal Hope Foundation and their efforts to raise awareness, hope and support to those families who are experiencing a fetal syndrome.