Das Deutsch Center for Special Needs Children
Middlefield, OH

Written by Dr. Heng Wang, Medical Director, and Patti Gallagher, Office Manager, Das Deutsch Center for Special Needs Children

Bringing the Babies Home

John, Ada, Sam, Mary, and David—all typical adorable babies born to different families, but sharing common symptoms from the same rare and life-threatening disease. These children were all treated at a nationally prominent hospital, to no avail. Their disease is so rare that many specialists have never seen an actual case and were unable to diagnosis it.

Countless times the babies’ parents traveled to the hospital by horse and buggy from their Amish community in Geauga County, OH just to see their children losing weight and their stomachs increasingly distended. Baby Ada was hospitalized for her first three months, while Baby John was kept for nearly six months. Their parents wondered if they would ever be able to take their children home.

Finally, as the children continued to worsen, the parents heard from other families about the Das Deutsch Clinic where Dr. Heng Wang and his staff had helped other local children with rare diseases. With faith and hope, the families made appointments and brought their children directly from the hospital. They were surprised to see that the DDC clinic is much like their own homes with the same comfortable rocking chairs and curtains just like theirs. The clinic even has a hitching post outside for the horse and buggy!
 
Dr. Wang recognized the symptoms of glucose-galactose malabsorption, a genetic disease that usually presents in newborn infants soon after birth. It is characterized by profuse and chronic diarrhea that quickly leads to nutritional wasting and severe dehydration which, if not treated properly, can be fatal. Diagnosing this disease is very challenging due to its rarity and the absence of diagnostic testing. But Dr. Wang and his staff were able to save these children from the ravishes of this disease. Amazingly, after regular carbohydrates were withdrawn from the infants’ diet, they showed immediate improvement. Breastfeeding is not an option for these babies. Treatment comes in the form of a carbohydrate-free formula with fructose added as a carbohydrate substitute. With this formula and a special diet, children can lead a fairly normal life.

Dr. Wang knew that glucose-galactose malabsorption had been recognized in other close-knit, segregated communities. Through intensive research, he and his staff hope to develop DNA diagnostic tests that can identify affected babies in the future through umbilical cord blood at the time of delivery. An affected child could then be put on the special formula immediately, avoiding the devastation of severe diarrhea and the battery of testing and related procedures.

The Clinic’s most recent glucose-galactose malabsorption patient, baby Joseph, is a model example of the research, patient care, and education programs of the Clinic. Joseph, the first boy in his family, was born weighing 9 pounds and 7 ounces. At three days old, his stomach became distended and he started having severe diarrhea. His parents’ anxiety grew as their baby continued to worsen. Then one day the DDC Clinic’s newsletter arrived and they began reading about glucose-galactose malabsorption. Believing Joseph had the symptoms they read about, they immediately took their baby to the Clinic, where Dr. Wang examined Joseph, and confirmed their suspicions.

The child’s symptoms were so severe, Dr. Wang thought the two-week-old might have to be hospitalized. Dr. Wang had a long discussion about Baby Joseph’s situation with his parents, respecting their concerns about taking the baby away from the familiarity and support of their Amish community and their young daughters at home. Finally, instead of admitting him to the hospital Dr. Wang came up with an outpatient care plan. He sent the baby home with a supply of the special formula and careful instructions to let him know right away if Joseph’s symptoms worsened. But Baby Joseph began showing improvement right away. When Joseph returned to the Clinic the following week, he was completely rehydrated, and he has been putting weight on ever since!  He weighed 15 pounds at his four-month check up.

Because of the DNA research conducted at the Clinic, coupled with comprehensive treatment protocols and community education, this rare disease and others like it will not threaten the lives of newborns in the future.

That’s good news for all the Johns, Adas, Sams, and Josephs.

Names are fictitious to protect patient confidentiality.

Graduates 2007 | Project's Graduate Report | Project's Information Page