Wondering (A Poem for Children Suffering With Russell Silver Syndrome)

 

Visitors try and hide the shock at how small she is.

They smile, say how cute she is, and congratulate the parents

When in reality, they're pitying them.

They wonder what the mother could have done to cause this.

They wonder if the baby will even survive the night.

The parents seem too overjoyed to notice anything wrong with their daughter

They smile, giggle at every gurgle and sound, and shed a tear as she opens her eyes for the first time.

When in reality, they wonder what they could have done to cause this.

They blame themselves for whatever is wrong with their daughter.

They, too, are wondering if she'll survive the night.

- Michela Anderson

Russell Silver Syndrome is a growth disorder, a form of dwarfism that not very many people know about. Its a particularly rare disease, with it occuring in only 1/100,000 births. To give a frame of reference, 1/123 women are expected to develop breast cancer. In most cases, the cause of the disorder is unknown, with no cases having a family history of RSS. So many children today are misdiagnosed, and therefore mistreated, because there is such a shortage of doctors who are aware of this syndrome. My goal is to make this disorder a household name, so children have the best chance to grow, and their parents can sleep just a little more soundly. Being an RSS baby is hard. Being an RSS parent is harder. The baby in the picture, if you hadn't guessed by now, is me.

        Symptoms include:

• Body asymmetry
• Loss of appetite
• Precocious puberty
• Speech impediments if the jaw is too small
• Poor muscle tone
• Joint problems (usually later, caused by body asymmetry and poor muscle tone)
• Coffee-with-milk (cafe-au-lait) birth marks
• Curving of the pinky toward the ring finger
• Delayed bone age
• Failure to thrive
• Gastroesophageal reflux disease
• Kidney problems, such as:
  
  • Horseshoe kidney
  • Hydronephrosis
  • Posterior urethral valves
  • Renal tubular acidosis
• Low birth weight
• Large head for body size
• Poor growth
• Short arms
• Short height (stature)
• Short, stubby fingers and toes
• Delayed stomach emptying, and constipation
• Wide forehead with a small triangle-shaped face and small, narrow chin
  
 

*Not all RSS children have each and every one of these symptoms. Each case is vastly different.