You expect the arrival of a newborn to be a precious time. For too many mothers the anticipation is shattered by unexpected preterm birth.
"I wasn't prepared at all to have a premature baby," said Leslie Tuomisto who recalled the birth of her son Rysen.
Baby Rysen was born eight weeks early, and rushed to neonatal intensive care.
"I had no idea what a NICU stay entailed or the complications that can really happen," Tuomisto said.
Even though Rysen weighed four pounds 14 ounces at birth, his parents would wait six weeks to bring their baby home from the University of Washington Medical Center's NICU.
"He had to be able to hold his body temperature. He had to be able to eat. He needed to be able to not have any decelerations in his heart, or his breathing patterns," recalled Tuomisto.
In a major initiative, Seattle Children's researchers are asking women's help as they search for answers that may explain and ultimately prevent preterm delivery.
"Why do one out of every eight women have a preterm baby? And why do 25,000 women experience a stillborn baby every year in the United States?" asked pediatrician Dr. Craig Rubens, explaining the urgency of the initiative.
Dr. Rubens is Executive Director of the Global Alliance to Prevent Prematurity and Stillbirth, or GAPPS. He said better nutrition, prenatal care, and limiting infections can make a difference. But there is much more to learn.
His research team believes the GAPPS repository of tissue samples they are collecting from pregnant women will yield clues.
Rysen is now two and a half. His mom volunteered to donate to the repository when she became pregnant a second time.
"All they do is take some tissue samples and extra blood, things that we were already doing anyway, and filling out some questionnaires," she said explaining how simple the process was for her.
Eventually samples from around the globe will be stored at the repository.
"So that scientists can come up with key scientific questions, use the samples and the data from the questionnaires they provide to actually help their scientific projects," said Dr. Rubens.
Answers from those future studies are crucial. According to GAPPS each year, more newborns die as a result of preterm birth than from any other cause. Emerging science shows preemies may develop health problems all through life.
"Disorders long term, like cardiovascular disease, lots of premature babies are at risk for hypertension, and maybe also at risk for other chronic diseases such as diabetes and even cancer," said Dr. Rubens.
When Rysen's baby sister Haylen arrived in November, she was born nearly full term. Leslie Tuomisto credited extra prenatal care that included progesterone shots, ultrasounds, early leave from her job, and more.
"We got intervention early on, saw specialists early on. And we did everything they said," she recalled.
The GAPPS website lists several tips to maintain a healthy pregnancy. The steps can decrease the risk of prematurity or stillbirth. They include getting early good prenatal care, quitting smoking, learning to manage stress, and getting immediate treatment for urinary tract infections and sexually transmitted infections. Also women should talk to their providers about any drug they are taking.
If a pregnant woman feels early contractions, or just feels something is wrong with the pregnancy, she should talk to her provider right away. Women undergoing in vitro fertilization, should talk to their physicians about transferring only one embryo to avoid multiple fetuses. And unless it's medically necessary, pregnant women should not schedule an elective delivery prior to 39 weeks gestation.