Hannah’s Haven at Fort Worth hospital honors baby who died of rare condition

Little Hannah Cook wasn’t supposed to live nine months, but she had a knack for defying the odds.

Hannah was born on March, 19, 2014, with Trisomy 18, a chromosomal genetic condition that affects growth and development. Many cases result in stillbirths, and most infants born with Hannah’s condition do not survive the first year, statistics show.

Hannah, who weighed 4 pounds, 1 ounce at birth, went straight to the neonatal intensive care unit at Texas Health Harris Methodist Hospital Southwest Fort Worth.

Described by her mother, Kristen Cook, as “nothing but sweetness and love,” Hannah persevered through an onslaught of challenges and three surgeries before dying on New Year’s Day.

Along the way, she touched the hearts of the many nurses and doctors who treated her.

On Thursday, hospital staff and the Cook family celebrated Hannah’s birthday with the unveiling of a newly renovated lactation room called “Hannah’s Haven.”

Kristen Cook said Hannah was fed her breastmilk exclusively for three months and then relied on donations from a friend and the Mother’s Milk Bank of North Texas.

“Having this room in her honor and her name means her memory will live on,” Kristen Cook said.

Trisomy 18 is a rare condition that can cause a number of developmental challenges, including gastrointestinal issues that make feeding and digestion difficult for some infants. The Cooks said breast milk was “essential” to Hannah’s health.

Hannah’s Haven features two pumping stations, comfortable seats and a sink. Breastfeeding literature is nearby to help educate mothers about resources. The room is available to hospital staff and visitors.

“It provides a space for employees to go while they are working in order to protect their breast milk,” said Teri Wheat, a registered nurse who is also a board certified lactation consultant.

Before hospital staff met the Cook family, efforts were underway to build a mother-friendly atmosphere, said Jamie Underhill, manager of labor and delivery and neonatal intensive care. Underhill said Texas Health works with the Healthy Tarrant County Collaboration, a partnership of hospitals, public health entities and universities, to create more mother-friendly spaces or lactation rooms at hospitals and universities in Tarrant County.

The local efforts come as more companies across the nation are complying with the Patient Protection and Affordable Care Act, which requires employers to provide “reasonable break time for an employee to express milk” for a nursing child. Employers are also required to provide a place, other than a bathroom, in which employees can express milk privately, according to the U.S. Department of Labor.

The special room will allow Hannah’s family and others she touched to remember the short time she had.

“Thank you for cherishing Hannah with us,” Jason Cook told hospital staff Thursday. “Thank you for all the love and the care that each of you gave to Hannah that helped us bring her home with us. We were able to enjoy her bright beautiful eyes — smiling eyes — for more than nine months.”

This story was originally published March 19, 2015 at 4:47 PM with the headline "Hannah’s Haven at Fort Worth hospital honors baby who died of rare condition."