Friday, August 12, 2011

Healthy babies

Wouldn't it be great if all parents expecting a special needs child had access to a program like this? What a great idea. We had so many questions and this would have been a blessing. Hopefully more programs like this will develop in other areas if they are not already in place.

Sutter offers program for pregnant women expecting special needs delivery

By Lynn La

lla@sacbee.com

Published: Wednesday, Aug. 10, 2011 - 12:00 am | Page 3B

Last Modified: Wednesday, Aug. 10, 2011 - 8:34 am

The Sutter Special Start Program launched Tuesday to give free medical, social and emotional support to pregnant mothers who are expecting a special needs delivery.

The program at Sutter Medical Center in Sacramento will help parents whose fetuses have been diagnosed with conditions such as cystic fibrosis, cleft lip or palate, neural tube defects, congenital heart defects and abdominal wall defects.

"When a woman is pregnant with a child with a particular condition, that could be very scary, isolating and overwhelming," said the program's coordinator, Jacqueline Masullo. "This is a place where they can open up with their feelings and feel supported by the staff."

Parents will be offered resources and medical guidance as well as a chance to network with others going through the same experience.

For input about what to include in the program, Sutter tapped mothers as advisers.

"Having other parents to learn from … to see their children growing, happy and successful just gave me inspiration and hope," said Jana Newman, whose 8-year-old daughter, Natalie, has cystic fibrosis. "And getting the right resources and the right information is just so critical."

Stephanie Davis also emphasized the importance of having a network of reliable medical information.

When she was pregnant with her daughter, Faith, and was told that her child might have cystic fibrosis, Davis had never heard of the disease except on the television show "The Real World."

"We were told, 'Try not to look on the Internet,' because there would be a lot of scary information on it at the time," she said. "I didn't even know what to ask, basically. I had so many answers I wanted, but didn't know the proper questions to ask."

With this program, Sutter hopes to ease these anticipated problems by providing a weekly parent chat line, hospital tours for parents, and postpartum support.

"Most pregnant women think their babies are going to be totally normal, so it's a bit of a shock," said Dr. William Gilbert, a perinatologist and medical director of Women's Services at Sutter. "We have developed tool kits or information profiles on many different conditions that are based in literature and scientific data that will educate and will tell you what to expect with these conditions."

For more information about joining the program, visit sutterwomens.org or call (916) 453-3468.

LEARN MORE

For more information about joining the Sutter Special Start Program, call (916) 453-3468 or visit sutterwomens.org.