Medical Mystery: The Baby Who Wouldn't Grow

Docs are baffled by a 14-month-old baby who weighs only as much as a newborn.

ByDan Childs<br>abc News Medical Unit
February 03, 2009, 4:57 PM

Feb. 4, 2009&#151; -- Atlanta Ruzman of the U.K. said her first clue that something was wrong with her pregnancy came at seven months, when she was barely showing a bump.

"I thought that I was really small," Ruzman, 24, told "I went to my midwife and asked her if everything was OK. She measured me, and she said yes, I was quite small."

Ruzman went to the hospital, where scans confirmed that the baby growing inside her was unusually small. Fearing that the baby was not getting enough nutrition in the womb, doctors made the decision to induce labor at 36 weeks and four days.

Suraya Brown entered the world at just over two-and-a-half pounds. That was 14 months ago. But today, doctors in England are baffled by the case of Baby Suraya who, it seems, has refused to grow.

Ruzman said that even now, her daughter is barely above the weight of an average newborn at 7 pounds, 7 ounces. This is only two ounces heavier than the birthweight of her older sister, Akilah, who was born about a year prior to Suraya.

Already, the child has undergone a battery of medical tests. An X-ray of the baby's bones revealed no abnormalities. Most recently, a genetic test for a form of dwarfism called Silver-Russell syndrome came back negative -- and doctors have also ruled out some other forms of dwarfism. But Ruzman said the team of physicians is still short on solid explanations.

"Every test we do keeps coming back negative," she said.

"Her case is highly unusual," consultant pediatrician Dr. Jide Menakaya, who has known Suraya since birth, told the U.K. paper the Daily Mirror on Monday. "I have certainly never seen anything like this, and I have been in pediatrics for nearly 17 years... We have run many tests but we haven't had a firm reason as to why she is not growing."

Repeated attempts to contact Menakaya directly were unsuccessful.

Dr. Ian Holzman, chief of the Division of Newborn Medicine at Mount Sinai Medical Center in New York, said it is little wonder that doctors find it a challenge to nail down a solid diagnosis.

"There can be a laundry list of conditions that might prevent growth, and it certainly looks like the doctors have looked for a number of these," said Holzman, who is not involved in the case, but who is familiar with similar cases of slow growth.

"I have cared for a child, small at birth, who grew very slowly, which we [initially] ascribed to poor nutritional intake," Holzman said. However, he added, further investigation revealed that the child had a condition known as gluten enteropathy -- and that the child began to grow once a change in diet was made.

But because there are so many potential causes for slow growth in infants, nailing down the exact cause is often a study in trial and error. Dr. Sessions Cole, director of the division of newborn medicine at the Washington University School of Medicine in St. Louis, Mo., said that any one of numerous issues could be at play in this case -- including cystic fibrosis and adrenal, intestinal, kidney or chromosome problems.

"The case ... is definitely interesting and unusual," Cole said. "I have not personally seen a child with a similar presentation."

Tiny stature is not Suraya's only symptom. Ruzman said her daughter recently began experiencing seizures, as well as extreme low blood sugar, or hypoglycemia.

"Her sugar levels at one point went below 1," she said. "In adults, that can put you in a coma."

Ruzman said that since this episode, she has laid Suraya to sleep on a special mat that monitors her breathing in case more seizures occur at night.

While terrifying for her mother, Suraya's seizures may offer more clues as to what may be behind her mysterious condition. Holzman said her hypoglycemia may point to a metabolic disorder -- though these can be difficult to diagnose.

A genetic abnormality may also be a factor. "The fact that she was small at birth suggests a genetic disease that might have a very small deletion or duplication of a part of a chromosome," Holzman said. "These can be hard to identify and require sophisticated chromosome studies."

Cole agreed that the fact that Suraya was so small at birth is an important clue.

"If this weight is correct, she was strikingly small at birth -- a condition known as intrauterine growth retardation," he said. "This observation means that the substances needed to grow in the womb were also disrupted."

He said one possibility may be a genetic defect that makes it impossible for the infant's body to respond to the hormone known as insulin, which is critical in the body's ability to properly regulate blood sugar and certain aspects of growth and development.

Though Suraya's life has had a difficult start, Ruzman said that her tiny daughter remains cheerful.

"She's such a happy baby; she's a cheeky monkey," she said. "That child is intelligent, and she knows what's going on around her."

Suraya's parents, however, continue to worry about what the future holds for their youngest child. Ruzman said the family's medical consultant told her it could take years before doctors find an explanation for her daughter's condition -- or the answer may never come.

"All we want to know is what we will have in the future for her -- will she be in pain? What will she have to eat? Will the length of her life be different?" Ruzman said. "We just want to give her the best quality of life."

In an effort to answer these questions, doctors have now admitted Suraya to London's Great Ormond Street Hospital, where she will undergo further tests. And Wednesday, doctors will operate on Suraya to determine whether any throat abnormalities could be contributing to her condition.

Ruzman said the hunt for answers has been difficult. But she added that her tiny daughter is worth the struggle.

"I wouldn't change her for the world, neither would her dad," Ruzman said. "We know that this child is very special."

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