Jalisa's story

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.

Jalisa was home with me only 2 weeks when, as a result of apnea, she became cyanotic (turned blue because she stopped breathing) while waiting at the doctor’s office for a scheduled appointment.  She was intubated, stabilized and transported to Floating Hospital in Boston. She spent a week on the respirator and was diagnosed with aseptic meningitis and viral pneumonia.  During that month-long hospital stay Jalisa was diagnosed with Costello Syndrome by Dr. Mira Irons.  She had neurosurgery to remove a bony projection on her cervical vertebrae which was impinging on her spinal cord (foramen magnum decompression).  It was discovered that she had a congenital right hip dysplasia and that two of her ribs had broken and repaired in utero.  She was discharged on an NG tube and apnea/cardiac monitor. 

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.

 

Over the next 6 months, she had tubes placed in her ears and was hospitalized briefly for RSV.  In October of 1997 Jalisa and I suffered a fall which resulted in a fracture of her left tibia.  Fortunately, she recovered quickly with casting for just 4 weeks.

Jalisa left my home in May 1998 for a preadoptive placement.  In October 1998 she was returned to my home after a 51A was filed on her behalf for charges of neglect and abuse in the preadoptive home.  She did suffer some physical setbacks as a result of that experience, but has excelled beyond all expectation since.  When she returned to me, I knew I could never again let her go to another home.  In February of 2000, my husband, John, and I were granted permanent legal guardianship of Jalisa.  We legally changed her last name to match ours shortly thereafter.

In June of 1999 Jalisa had surgery to release her heel cords bilaterally and to release her right hamstring.  At the same time, she once again had tubes placed in her ears.  Following recovery from the surgery, Jalisa was fitted with AFO’s, then later was using UCB orthotics. Her PT did prescribe AFO’s once again, but after a period of use, we decided to discontinue them.  She no longer uses orthotics.  Jalisa used a wheelchair until February of 2000, at which time she began to use an aluminum frame walker.  She started walking totally unassisted in November, 2000, just 2 weeks before her 5th birthday.

At 12 yrs old Jalisa is about 47 ¾  inches tall, and weighs about 60 pounds.  She eats and drinks well since her G-tube removal in October 2003.  She did require surgery to close the G-tube site in April 2004.  She wears glasses for myopia.  A mitral valve insufficiency has resolved.  She has a gait typical of other CS children.

On January 7, 2005 Jalisa needed emergency neurosurgery to revise her shunt.  After a difficult week following her surgery, it became apparent that the shunt valve was not working properly, and had become clogged.  On January 16 the valve was again replaced - this time with the assistance of digital imaging which had been done during an MRI prior to surgery.  It was discovered during the MRI that Jalisa has a Chiari 1 malformation, a condition common to Costello Syndrome.

In September 2005, Jalisa had surgery on her right hand to remove a ganglion cyst and to biopsy a mole in her palm.  The cyst and the mole biopsies proved to be benign.  At the same time, we were able to harvest a tissue sample and a small papilloma, along with a blood draw, for Costello Syndrome research.  The cyst and mole biopsy were also sent to the researcher.

In May, 2007, Jalisa had orthopedic surgery to help her stand straighter, giving her a better gait and more stamina when walking.  Dr. Lawrence Karlin of Children’s Hospital, Boston, performed a right femoral osteotomy and bilateral hamstring release.  She spent 4 days in the hospital, and was released wearing immobilizers on both legs.  She was kept sitting/lying at less than 45 degrees for 2-3 weeks and after that same time period was able to wear the immobilizers only at night.  She continues to wear the immobilizers at night, and continues to receive PT to strengthen her hip flexors (particularly on the right side).  Her stamina is increasing, and she does appear to be standing much straighter.

Jalisa is seen by a Chiropractor every other week.  It is our opinion that this has helped her movement to become more fluid, her arms extend straighter, her shoulders have dropped to a more normal position and her lumbar kyphosis is no longer as pronounced.  She is able to sit longer in the car with significantly less discomfort.  She is no longer experiencing referred pain in her ears due to tight muscles in her neck.  By the end of the second week, though, she does begin to complain of neck stiffness, and her gait becomes more stiff.  She is able to identify when she is experiencing discomfort that will be relieved by chiropractic.

Jalisa continues to receive OT, PT, and Speech therapy and is followed by Cardiology, Neurosurgery, Endocrinology, Genetics, Orthopedics, Dermatology, Optometry, Developmental Opthamology, and her primary care physician.  She sees the dentist regularly.  She takes 15 mg. of Prevacid once a day for reflux, and has recently begun to take 5 mg. of Zyprexa each night at bedtime to help stabilize her mood.  This was prescribed by a psychiatrist at MSPCC where Jalisa sees  a councilor every other week to help her cope with the multiple traumas of her life and her growing self-awareness.  She also regularly sees the adjustment counselor at her school to help her with social skills and any difficulties she may be experiencing in her classroom(s).

When Jalisa was in the fifth grade at school,  her schoolwork wa generally at the second grade level.  She is in a substantially separate classroom with inclusion where possible with her peers.  Jalisa is actually very social, and well-known in her school.  Her teacher has told us that she is one of the most popular kids there!  That does appear to be true - at school.  Unfortunately, she is becoming more aware that once everyone goes home, the other girls go to each other’s houses, have sleep-overs, and talk on the phone.  It is difficult for her to keep up physically when the other kids are riding bikes, taking long walks, playing outside.  She has difficulty understanding/playing board games, and her poor fine motor skills make it hard for her to do many of the things her friends do (ie, making bracelets, drawing, coloring)  Also, her conversational skills are limited by her very different life experiences and her lack of ability to understand some of the basic concepts of pre-teen friendships.  She is well-loved at school, and everywhere we go she is cheerfully greeted by children and adults alike.  But she is not generally part of the children’s out-of-school social circles, aside from birthday parties for other children in the special ed classroom.  We keep Jalisa involved in local organized activities to help her be more a part of the lives of her ‘typical’ school friends.  She enjoys being in Girl Scouts, and loves her Sunday School class.  She is in the Service Club at school, helping to knit hats for the homeless.  She is also in the Drama Club, so she will perform in the school play in June.  We also have enrolled her in a program offered by BAARC (Brockton Area Association for Retarded Citizens), where she enjoys being among the highest functioning of the children attending, and she LOVES chillin‘ with the teen volunteers.  This program meets weekly for arts, crafts, music, and swimming - she loves it!  She ’helps’ at the local food pantry (where I’m the director).  My teen volunteers have taken her under their wings, keeping her up on current music and including her in their conversations.  They sing with her, play with her, email with her, and enjoy her as much as she enjoys them. 

People often tell us that she is so lucky to have us - we, on the other hand, feel that we are the lucky ones to have been blessed with her. 

written by Sue Sullivan, Mom of Jalisa

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