Baby Lena is 14 months old and has what is known as “Open Lipped Schizencephaly with right sided Hemiparesis”. This means that she has clefts, or pieces, missing from her brain and that the midline is not centered like most people. It causes her to be partially paralyzed on the right side in her arm and leg. It has also resulted in what right now is being assessed as a 25% developmental delay. Her mother who is a single mother of three is hoping her situation will change with physical therapy.
Most children with schizencephaly develop seizure disorder by age 5, thankfully Lena has shown no signs of this so far. Lena also has what is known as “Arteriovenous Malformation” which appears on her nose and forehead which is the result of her having an open skull malformation. The artery that drains blood away from Lena's brain runs down the middle of her face through an opening in her skull that should not be there. Her jugular does not work at all. Her condition means that any germs or bacteria that she is exposed to goes through her nose and are directly exposed to her brain leaving her at increased risk for brain infections like meningitis and stroke. It also means that if she were to hit or bump her nose or forehead it could result in skull or brain injury and massive bleeding similar to if your throat were cut.
Lena also has a cardiac defect known as “Patent Ductus Arteriosus”
This is a link between her heart and lungs. In babies who develop normally this is what allows them to not breathe air during pregnancy, taking their oxygen directly from their mother’s blood stream. In most babies, this closes within hours or days after birth. Lena's is still open leaving her at increased risk for cardiac and lung infections. Lena has also been fitted for leg braces to assist her in walking.
Poetry in Motion Kare Bears will be honoring Lena with a “Dream for a Day” at our organization 3rd year Anniversary Poetry event. We will be raising funds to send her on a shopping spree. Supplying her with some of the necessary things to help assist her in her physical development. Items such as a special walker, kid sized furniture(like a couch, chair , table and chairs etc...) because she can not be allowed on adult sized furniture because of the risk that she may fall. She also needs a low to the ground toddler bed with soft rails ( she can not sleep in her crib because of the hard slats and rails. If she were to hit her face on these during the night it could be horrible! Right now Lena sleeps in a soft sided play pen. We are also trying to supply her with toys that would encourage brain development and stimulation.