Aleah's Home Page
CdLS Child
I'd like to introduce you to Aleah, my little sister. She's a real 9 month old cutie! She has long eyelashes, thin upper lip, downturned corners of her mouth. Aleah was born with the Cornelia de Lange Syndrome. CdLS is a rare genetic disorder, that really has no known cause. These characteristics you've read so far about Aleah are only a few ..... she has other challenges, but you would never know it. She has a wonderful disposition. She loves to coo and gurgle. Her smile not only lights up her face, but it will yours as well.
Aleah was born October 15th, 1996. She was premature - 32 weeks. Like alot of parents ....... you count the fingers, count the toes ....... okay .... everything is all here. When she was first born, you wouldn't be quite sure if ....... her cute little pixie face is because she was a premie or "maybe there's something wrong?". She weighed 3.5 pounds. She was so tiny and gained weight slowly. She was discharged from the hospital the day after Christmas. Her parents, Al & Stella, were told to "watch her carefully, she's a premie". January 5th, 1997, our father had to help her breathe, giving her mouth to mouth. Aleah was admitted to the hospital for "respiratory distress". She was diagnosed with bronchiolitis, requiring intubation and E. coli ursepsis. Still no diagnosis. Is anything really "wrong"? said the peditrician. "Pray, and she will get better".
She left that hospital on February 4th. On February 12th, she was presented to her peditrician again ...... she was listless and becoming dehydrated. Still there seem to be "no clue", but ....... alas a referral to be seen by a geneticist. She was admitted to Lucile Salter Packard Children's Hospital at Stanford and remained hospitalized until March 4th of 1997. During her stay there she was seen by a genetics team. She was a "classic case" they stated. Several dysmorphic features were noted, including brachycephaly (short and wide head), depressed nasal bridge, long eyelashes, long philtrum (abnormally long groove in the center of the upper lip), synophrys (eyebrows that grow together). These findings in addition to her history of pre- and postnatal growth dely, Ventricular Septal defect (congenital heart defect), optic atropy, and hearing loss were felt to be consistent with a diagnosis of Cornelia de Lange Syndrome. FINALLY!!!
Sad to say, she was taken from Al & Stella and placed in a foster home. The Child Welfare Agencies had to investigate. They wondered why she had been in and out of so many hospitals. They felt she was being neglected. Meanwhile her mother was trying to recover from postpartum depression, sunk deeper and deeper into depression. Her second child, her mind filled with "what is wrong with my baby", "what is happening", "can't somebody help"! By the end of this course of events, she was placed on 3 different types of medication and determined "not mentally capable of caring for her special needs child". Aleah was placed on March 4th in a foster home. The middle of April, Aleah is now 6 months old, while in the care of foster parents she was submitted to yet another hospital with aspiration pneumonia. On May 14th her parents were cleared of all allegations. Unfortunately my father had to work (he couldn't afford a private nurse) and Aleah's mother was not able to care for her. She couldn't go home. NOW ........ the question was ...... does she go to a foster home or is there someone else. Whomever she went home with had to train in the hospital. She had a Nissen Fundoplication done as well as a G tube put in place. She needed to be feed around the clock, every 4 hours, she needed to be given her 3 different types of medication. She needed to be in a place where she could bond with her parents. Not on a schedule of 2 times a week for 1 hour.
On May 19th, Aleah went home with me. Lorna, her big sister.
Aleah is a fighter.
Note:
In this day and age, it was very surprising to find that situations like this could happen. Aleah's father is in his early sixties, her mother is in her mid-thirties, both are Asian, both from the Philippijnes. They both put their trust in the doctors, nurses, social workers, the "professionals". They are still working to regain "custody" of Aleah. (meaning, not having the social agencies administring their every move). Stella's goal is to work towards a more stable mental health.As Aleahs' big sister, I wrote her story in hopes that it may help others. There is always HOPE!
ALEAH IS A FIGHTER!
Links to other sites on the Web
The Cornelia de Lange Syndrome Foundation
© 1997 lsilva0930@aol.com
