Jalisa's story page 1

Jalisa was born approximately 10 weeks early (unlike most CS children, who are generally full term), probably due to her biological mother’s other issues (I am her permanent legal guardian).  Her mother overdosed on Zoloft early in the pregnancy (before she realized she was pregnant), had depression and alcohol issues, poor prenatal care, and had just turned 18.  Jalisa weighed 3 lbs 9 oz at birth, and was shaped like a “C” with her feet nearly touching the back of her head.  Many CS infants hyperextend, though not usually to the extreme, as she did.  She spent 2½ months in the special care nursery before she was released to my foster care.  During that time, she did experience feeding difficulties and poor postnatal growth.  At 2½ months old she weighted only 4 lbs 12 oz.  She did not reach 5 pounds until she was 5½ months old.

It was during this hospitalization that I discovered that she had been fed via NG tube after her birth, until the time she was placed in my home.  This was shared with me by the Doctors at NEMC/Floating Hospital when her records were received from the hospital of her birth.  I later learned from one of the nurses who had cared for her after her birth that she had actually been “sent home to die”.  I’d been instructed to feed her only for 15 minutes every 4 hours (during which time she could only take about 7cc’s of formula from her bottle).  During that first 2 weeks with me, her weight had dropped to 4 lbs 8 oz.  Her doctor and I recognized that she appeared quite syndromic, and had already begun making appointments with genetics and other doctors in Boston before she was rushed in by ambulance.

Two weeks later, Jalisa was once again airlifted to Floating Hospital. This time for bradycardia (slow heart rate).  She once again spent time intubated and it was discovered that she had an infection in her lungs causing prolapse of the right lung.  Following another month-long hospital stay, she was once again discharged to my home.

In May of 1996 it was determined by PH probe that Jalisa was unable to swallow without risk of aspiration and could not survive without tube feeding.  The NG tube was replaced with a G-tube, which was her primary source of nutrition until October 2003, when it was removed.  Over the next 2-3 months of 1996 she was seen in the hospital for respiratory distress (at which time she was placed on oxygen therapy and oxymeter at home), and seizures.

In July she was diagnosed with hydrocephalus and had a VP shunt placed.  Following the shunt placement, Jalisa spent 2 weeks on a respirator and an additional 2 weeks in the hospital for related complications.

In November 1996 Jalisa began to experience obstructive apnea and had to have an emergency adenoidectomy after a ‘code blue‘ in the PICU.

In May of 1997 Jalisa was finally stable enough to withstand surgery to correct her hip dysplasia.  She had an open hip reduction, requiring shortening of the femur.  A week later, the femur had dislocated again, requiring a second surgery to stabilize the hip.  She spent an additional week in the hospital, and was in a spica cast for the next 2½ months.  Her rehabilitation included a split spica cast which allowed her to be removed  for increased time periods over the next several weeks, then a brace worn over decreasing time periods for the next 3 months.  For several months, Jalisa was placed daily in a prone stander to improve the muscles in her torso and her legs in preparation for eventual independent standing and walking.

In June of 1997, Jalisa presented with enlarged fontanels and seizure activity.  It was determined that the patency of her shunt was compromised, and she needed a revision.