A New Appreciation for Special Needs

9/14/2013 7:00 AM
By Anne Harnish Food and Family Features Editor

NEW HOLLAND, Pa. — Smiling broadly, the little boy snuggles and stretches in his mother’s lap. His large, expressive eyes look around the room as his oldest sister, Rozelle, 15, playfully gazes back at him. He enjoys waking up slowly, snuffling loudly and listening to the sounds of the day. He responds to his mother’s gentle cooing and the evenness in his father’s quiet and steady voice. His family’s home is calm, neat and spacious.

Being held by mom or dad is especially comforting to Durell Zimmerman. He is a special needs toddler who just turned 3 years old this month. But it was unclear if his life’s thread was going to carry him even this far.

Durell was born with a severe brain defect called semilobar holoprosencephaly, or HPE. It is a condition in which the sides of the brain do not separate normally into two hemispheres during the baby’s development. HPE is not rare in the general U.S. population, but Durell’s is only the second case diagnosed in Lancaster County, Pa., said his parents, Glen and Cristine Zimmerman.

The late-30s couple, of New Holland, Pa., have four other healthy children, including second-grader twins, Kayla and Karla. Their oldest son, Glendon, 11, is in the sixth grade.

“Before Durell, we just took normal, healthy children for granted,” Glen Zimmerman said.

“Having the twins were a little’ stressful,” Cristine added, for comparison.

There were no signs during Cristine’s pregnancy that Durell would be born with HPE, and the couple had no reason to suspect any problems because her pregnancy was normal. But when Durell was born at Ephrata Hospital, he had a cleft lip and palate, and a small head, all indictors of a bigger problem. The hospital transitioned Durell to Hershey Hospital for specialized care. And, because the couple is from a Plain Sect called Weaverland Mennonite, within which there are occasionally babies born with genetic abnormalities, the hospital suggested they contact the Clinic for Special Children, a unique clinic that serves Plain Sect children with genetic disorders. It just happened to be close by, in nearby Strasburg, Pa.

Dr. Kevin Strauss, one of the Strasburg children’s clinic’s main doctors, quickly came to Hershey Hospital to help, said the Zimmermans. Within two weeks of his birth, Durell’s diagnosis was made after an MRI scan showed his HPE brain abnormality.

Durell wasn’t doing well at the hospital because he had episodes of severe sleep apnea during which he sometimes stopped breathing. Neither was he able to eat or swallow, Glen Zimmerman said. A feeding tube was installed, and the family and staff were forced to adopt a “wait and see” attitude. Eventually, Durell was discharged from the hospital under hospice care with supervision by the clinic. His condition was so poor that it was expected that he would live just 1 to 2 more weeks.

“At that point, we didn’t realize what being at the clinic meant,” said Glen Zimmerman. “We just thought he (Strauss) was just another specialist.”

But, from the moment Strauss saw Durell, he “knew what things were,” Glen Zimmerman said. “It was like he had a road map for what to do. He knew what the symptoms meant,” he said, acknowledging it was more than even the hospitals knew to do.

Strauss quickly picked up on some key problems and discomforts and recommended treatments to address the symptoms. For example, he found that Durell’s brain does not regulate critical sodium levels in his blood, an imbalance that requires constant maintenance to prevent serious illness. So, treatment was started for the sodium imbalance. When Durell was having seizures, the clinic recommended specific medications to prevent more. He has not had seizures for nearly two years. The clinic has gone on to help the Zimmermans find ways to allow Durell to sleep longer and lessen his many other symptoms as well.

“You don’t manage the cause with HPE,” Glen Zimmerman said, “You manage the symptoms. We had no idea what to expect.”

HPE brain abnormalities vary by individual, but they generally create ongoing problems as the brain develops, including many serious and life-threatening problems. It is unknown whether HPE is genetic, though it is a possibility, according to Strauss, and the other HPE case locally is a distant relative of the Zimmermans. But no one knows the cause just yet, and research on HPE is at an early stage. HPE is not curable.

The clinic does close monitoring of Durell and provides education and feedback for the family as they learn to handle his varied symptoms. Glen Zimmerman decribes the clinic as a “one-stop shop” that is able to do quickly what a hospital staff may not be able to do at all.

“They told us right away that he would never walk or talk,” Glen Zimmerman said.

Durell is alert and aware, but he doesn’t know how to interact or respond normally. He can get very upset if he is left alone, or is not held most of the time. He continues to have apnea and many breathing problems.

“When he is not feeling well,” Glen Zimmerman said, “it can be very difficult. If we don’t stay ahead of it, things can get out of control.”

Durell has had several surgeries to correct his cleft lip, but a gap in his upper palate remains and contributes to a problem requiring regular suctioning of mucous and fluids from his mouth.

Wearing a tan-and-white pair of dungarees and chortling away, Durell is lively and responsive, but his limited brain function is evident. He can become extremely distressed, easily, by just small changes in his surroundings. His family has learned to do their best to keep him content at all times, including such changes as driving different, longer roads to the doctor so that bumps in the road don’t upset Durell.

The Zimmermans said it can take 2 or more hours to calm Durell down again to a point of ease and contentment if he gets distressed.

His need for 24-hour care creates an exhausting schedule. Durell’s biggest problem is sleeping. A great night is when he sleeps up to 6 hours, but usually it’s just 2-3 hours at a time. The family has hired trained nurses to care for him during night hours, Monday through Friday. The nurses give him his feeding through a permanent feeding tube just so the family can rest and recover and have some sense of normalcy for the other children. It takes about an hour and a half per feeding, and he must be fed every 4 hours. The nurses also monitor his apnea, sodium levels, comfort and other needs through the night hours.

“The night nurse has helped tremendously,” Cristine Zimmerman said. “When he’s awake, he doesn’t entertain himself. He requires constant attention.”

The Zimmermans have only praise for the Clinic for Special Children, which is their first phone call if Durell is not feeling well. The couple had been familiar with the clinic because it was known locally and they sometimes attended the yearly auctions that provide a major part of the clinic’s funding. But now the clinic holds a primary role in the family’s life as it relies on the clinic’s doctors and its vast wealth of information about brain function in special-needs children.

Glen Zimmerman, who is co-owner of Raytec LLC, a metal manufacturer specializing in rain gutter accessories and sheet metal fabricating, has some other talents as well. He is an expert model maker.

Last year, his working model of a hit-and-miss engine for an ice cream freezer, brought $12,600 at the clinic’s annual auction after he donated it to help them raise funds.

With that success, he carefully planned this year to build and donate a Shirk Traction Gear model, originally made in the New Holland area from 1909 to 1913. The machine has all working parts and even the cutter runs.

The model took him “hundreds” of hours to build, he said. He hopes it will raise money for the clinic, to help pay back all that it has given to the Zimmermans for Durell’s care.

“With HPE, things can change very rapidly,” Glen Zimmerman said. “There are many, many unknowns.”

“We’ve learned more than we ever wanted to learn or even knew existed,” he added. “This has been a curve ball in life. ... We have to make sure that the family is not neglected.”

“We took a lot for granted before Durell,” Glen Zimmerman said. “But we’ve become stronger.”

The auction to support the Clinic for Special Children is being held Saturday, Sept. 21, and features crafts, household items, Amish quilts, farm equipment and supplies, furniture, collectibles, specialty items and more. It takes place at the Leola Produce Auction, 135 Brethren Church Rd., Leola, Pa. (located off of Route 23). The doors open at 7 a.m. The quilt sale begins at 11 a.m. For information, call 717-687-9407 or go online to www.clinicforspecialchildren.org.

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