Paul and Julie Nafzger learned when Julie was only 7 weeks pregnant that they’d be the parents of twins.

Saturday, March 02, 2002

Paul and Julie Nafzger learned when Julie was only 7 weeks pregnant that they’d be the parents of twins.

Julie had miscarried before, and had low levels of progestin. Her doctor decided to do an ultrasound to make sure she was indeed pregnant.

But it wasn’t until the second ultrasound, and a subsequent visit to a specialist, that they learned that there was a problem with one twin. When her doctor said he’d like her to see the perinatalogist who visited Albert Lea Medical Center on a regular basis, Julie said, &uot;Initially, I had a sinking feeling.&uot;

Another ultrasound revealed a lesion along the lower spine of the &uot;baby on the left,&uot; as she became known. Even from the shape of her head, which was lemon-like instead of oval, the doctor was able to confirm she had spina bifida, a neural tube defect characterized by incomplete closure of the spine.

&uot;It was very sad,&uot; Julie recalled of learning the news. &uot;It was sad because we knew she’d have difficulties. Everybody hopes they’ll have a perfect child. We had a fear of the unknown. But it was more for her. Not, ‘Oh poor us.’&uot;

The couple went to Rochester for tests, and an amniocentesis, where a long needle was inserted into Julie’s abdomen and fluid was extracted from each of the twins’ amniotic sacs. Electrocardiograms were also done on each baby.

&uot;It was a long day at Rochester,&uot; Julie recalled. &uot;We even saw a geneticist.&uot;

Because she is a physical therapist and actually works with children in the school district with special needs, Julie knew a lot about the condition. &uot;I found myself being an educator for those around me,&uot; she recalled.

Family members also went to the Internet and looked up information on spina bifida.

At 31 weeks of pregnancy, Julie was put on preventive bed rest. She wasn’t experiencing any early contractions or backaches, but the doctors didn’t want any further complications for the babies caused by arriving early.

&uot;It worked,&uot; Julie said. &uot;I carried to 38 1/2 weeks.&uot;

The babies were delivered by Caesarean section at Methodist Hospital in Rochester on April 12, 2000. Natalie, known as the twin on the right, was born healthy. Elizabeth weighed 5 pounds, 11 ounces, and was immediately transferred to the Neonatal Intensive Care Unit at St. Marys Hospital. Spinal surgery to place the exposed nerves, muscle and spinal tissue inside her body and cover it with skin was performed the day she was born, and a shunt was put in two days later to prevent hydrocephalus, or fluid building up on her brain.

According to information from the Mayo Clinic, about one of 500 babies is born with spina bifida. There are different forms of spina bifida: spina bifida occulta and myelomeningocele.

With spina bifida occulta, a small separation of the bones shows up only on an X-ray, and most children are unimpaired.

Myelomeningocele, the form which Elizabeth was bosrn with, is more severe. Elizabeth’s lesion was large, but it was low on her back, Julie said. &uot;The lower it is, the less nerve involvement there is,&uot; she said, adding Elizabeth has no active movement of the toes and ankles.

Elizabeth spent eight days in the Neonatal Intensive Care Unit before coming home.

She had to have one other surgery – at 5 months of age – when her shunt tube became blocked. Her parents knew something was wrong when she stopped sleeping through the night and her head began to enlarge. She only had to spend one night in the hospital following the procedure to correct it.

Cognitively, Elizabeth has tested normal for her age. But it’s in her ability to get around that she falls behind Natalie. Natalie began walking at an early age. Without a push toy, Elizabeth crawls.

Julie assists Elizabeth with exercises that increase her range of motion each morning. She wears braces during the day, then does more exercises before going to bed at night.

&uot;We need to motivate her to walk, but having a twin sister who walks is the biggest motivator,&uot; Julie said.

They don’t know if she’ll always need an assistive device to help her walk. She does have good, strong thigh muscles, her mother said.

And her condition is not progressive. &uot;She is who she is,&uot; Julie said.

At 23 months, she’s a happy little girl with a personality that’s very different from that of her twin sister.

Because of the time she spent in the Neonatal Intensive Care Unit in Rochester, which is supported by the March of Dimes, Elizabeth was chosen as the Albert Lea Chapter of the March of Dimes youth ambassador for 2002. The Nafzgers will push their twin daughters in a double stroller at WalkAmerica Sunday, April 21. Their son Brent, 5, plans to ride his bike on the walk.

During WalkAmerica, nearly 500,000 people are expected to walk in more than 1,400 communities in every state, the District of Columbia and Puerto Rico. Nationwide, more than 9 million men, women and children will take part as sponsors, volunteers or walkers. Funds raised in WalkAmerica support research and programs that benefit babies across the nation and here in Albert Lea.

The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education and advocacy to save babies.