NICU family support program launched at children's hospital

When Heather Keller’s twins arrived 14 weeks early, she was not only unprepared for their birth, but also overwhelmed by all the medical issues that followed. Brain cysts. Pneumonia. Infections. The problems started at the top of their heads and ended at their toes, she said.

Doctors and nurses patiently and thoroughly explained each new health problem or symptom, but searches on the Internet for additional and detailed information often left Heather and her husband with more questions — and sometimes pretty confused.

“I would try to make sense of what I had been told, but what I would find would make less sense and was written in medical jargon,” said Keller, whose twins are now robust, healthy sixth-graders.

Today, Keller works as parent leader for the Family Centered Care Program at Lucile Packard Children’s Hospital Stanford, which is part of Stanford Medicine, helping guide and assist parents whose children are patients. She said she would have found great comfort while her babies were still in the hospital had she had access to the new March of Dimes NICU Family Support Program, which was launched at the hospital last year.

Caring for the whole family

Every year, 1,500 babies are admitted to the neonatal intensive care unit at Lucile Packard Children’s Hospital Stanford because they have been born too soon or with a medical condition that requires intensive care. Caring for these babies involves the entire family, said Christopher Dawes, the hospital’s president and chief executive officer.

“We work very hard to take care of the whole family and not just the baby,” Dawes said in announcing the new partnership with the March of Dimes. “This program increases parents’ confidence and gives NICU staff the tools they need to support families and babies.”

Through the partnership, families of children in the NICU have access to sensitive and appropriate educational materials in print and online, in both English and Spanish. The program helps parents better understand the often complex issues their babies face and the treatments they will receive. The program also provides NICU nurses and staff with additional support for the many questions families may have about a premature birth.

Like learning a new language

“When you have a premature baby, you have to learn a whole new language. You are so inundated with terms, it’s easy to get mixed up,” said Keller. “The March of Dimes website and written materials are a great reference that families can use throughout their journey. It’s accurate and written in a language that’s easy for families to understand, but is not complicated or condescending.”

You are so inundated with terms, it’s easy to get mixed up.

In addition to the materials, the program offers iPads to NICU families, providing them with easy access to the March of Dimes materials and website without having to leave their babies’ bedsides.

The March of Dimes NICU Family Support Program is available in hospitals across the country and serves 90,000 families each year. At Lucile Packard Children’s Hospital Stanford, it’s part of a longstanding collaboration with the nonprofit to improve the health of both babies and mothers.

“For many families, a baby’s NICU stay is like a roller coaster ride, with ups and downs, triumphs and setbacks,” said Jennifer Howse, PhD, the March of Dimes president. “The March of Dimes developed the NICU Family Support Program to support families during their baby’s time in the NICU and help them be involved in their baby’s care,”

Cynthya Cano, whose baby, Maximus, spent six weeks at Lucile Packard Children’s Hospital Stanford after he arrived 10 weeks early last summer, was one of the first parents to receive materials from the new program.

“There’s a lot of information, and it was very helpful,’’ said Cano, who brought her baby home in late August. “I had lots of questions and concerns taking him home, but I feel really blessed for all the care we received.”