Stanford Medicine Newsletter Updates For the Local Community

 

Expert support for early arrivals

Information and resources help prepare worried parents

Cynthya Cano, whose baby, Maximus, arrived 10 weeks early, was among the first parents to receive helpful materials from the March of Dimes NICU Family Support Program at Lucile Packard Children's Hospital Stanford.

   

When Heather Keller's twins arrived 14 weeks early, not only was she unprepared for their birth, but she quickly became 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 thoroughly explained each new health problem or symptom as it arose, but searches on the Internet for additional details often left Keller and her husband with more questions and sometimes 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 11-year-olds who just started sixth grade.

Today Keller works as parent leader of the Family Centered Care Program, helping guide and assist parents whose children are patients at Lucile Packard Children's Hospital Stanford. She said she would have found great comfort had she had access to the new March of Dimes NICU Family Support Program, which was launched at the hospital in August.

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

"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 for families. It's accurate and written in language that's easy to understand but not condescending."

Every year, 1,500 babies are admitted to the specialized 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 newborns involves the entire family, said Christopher Dawes, president and chief executive officer of Lucile Packard Children's Hospital Stanford and Stanford Children's Health.

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

The program also offers iPads to NICU families, allowing them easy access to the March of Dimes materials and website without having to leave their baby's bedside.

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 long-standing collaboration 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. 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," said Jennifer Howse, PhD, the March of Dimes president.

Cynthya Cano, whose baby, Maximus, spent six weeks at the hospital after he arrived 10 weeks early in July, was one of the first parents to receive materials from the new program.

"There was a lot of information, and it was very helpful," said Cano, who brought Maximus 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."

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