Anne Duret asked:  

"Does anyone have experience working with an infant with Jarcho-Levin?  I have a 38 week twin with this diagnosis which includes some vertebral anomalies.  Baby is AGA and seems to be nursing well so far on day of life 3.  Other twin does not have symptoms of this syndrome but is SGA and has already lost more than 9% of his birth weight.  Mom is an experienced breastfeeder and is not wanting to supplement at this time.  Any input is welcome as I am unfamiliar with this diagnosis."

I am relying on the National Organization for Rare Disorders (NORD) for information on this syndrome from their tremendous database.  NORD does a world of good.    http://rarediseases.org/rare-diseases/jarcho-levin-syndrome/

During the first eight years of my career in health care, I worked with infants, children, and young adults with genetic and other chronic health problems.  I also am not familiar with this diagnosis, but in the world of rare disorders, this is not unusual.  During the earliest part of my career, my position was as an area nurse covering a seven-county rural region for West Virginia's Children With Special Health Care Needs Program (then named Handicapped Children's Services, and prior to that name change, was initially named Crippled Children's Services in response to the polio epidemic in the 1930's).  This program is under the state's Bureau of Public Health, and all states receive federal funding for this program, which has added pages of eligible diagnoses since the early days of the polio epidemic in the U.S. The program name varies from state to state, and each state may add their own monies to operate their program if they choose/if their state legislature chooses to further fund it.  During those first eight years of my health care career, I often accessed NORD's database to provide handouts to parents on various health problems, and parents always expressed appreciation for the detailed information.  

With best regards,

Debra Swank, RN BSN IBCLC
Ocala, Florida USA
More Than Reflexes Education
http://www.MoreThanReflexes.org
http://www.MoreThanReflexes.org/on-learning/

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