Loving Jenna
Jenna was born October 8th 2004 with a high fever and was immediately taken into neonatal Intensive care unit. Jenna was released within 24 hours to the nursery. Jenna would scream and cry non stop. She screamed for 4 hours straight the nurse said “Oh boy are you in trouble, I’ve never seen a baby cry like that” She was inconsolable.
Jenna has been a complete insomniac since the day she was born. She also had severe Reflux as well as constipation. Jenna never learned how to latch on correctly, she would be fussy with the nipple on the bottle. She had a poor sucking reflex. Jenna never ate from a spoon she would push the spoon away with her tongue. The Drs had no concern what so ever .
Until Jenna turned 3 she started nursery school. She had a cold that never went away. Her temperature was 101 and she was very lethargic. I took her to the hospital I worked for as a nurse. They did a CT labs chest xrays. You name it, every thing was “normal”, except the way she looked. We took Jenna home and it took a month for her to go back to baseline. She always had trouble keeping up with the others on the playground Jenna was ,always very shaky. Otherwise, she seemed normal,she hit every milestone.
When Jenna entered kindergarten they placed her in physical therapy and occupational therapy. Her OT always suspected she had a form of cerebral palsy.
When Jenna was 6 yrs old and got a sinus infection. Two different types of antibiotics didn’t work. I took her to the ER she had no idea who I was. She was very confused. Seeing pink ponies and things. I took Jenna to her DR who then called 911 to the nearest hospital. She felt as if Jenna had something neurological going on.The dr said she was delirious because she had a virus and was severely dehydrated. Against my better judgement I took Jenna home. She was walking into walls, she couldn’t see, she would pick her head up to see who was talking to her, for some reason her eyes wouldn’t move. Then she became lifeless, They did a spinal tap on her with out sedation. The CT scan showed opacified sinus cavities. Hypo/hypermyelnation.
Again Drs weren’t concerned. They told me oh you will have to follow up with that after she goes home. I asked is that consistent with cerebral palsy?
Again I was dismissed.
I asked to have a neurologist see her, they declined that request.
On a follow up visit to her Primary Dr they requested an MRI. I know the scan wasn’t long. I knew there was an issue when the radiologist requested an extra series, as a Nurse I knew he saw something.
It stated in his report to follow up for vanishing white matter disease…this was 2012 and here we are…
2016 — Jenna has had a G-tube inserted and now needs leg braces and a wheelchair for long distances. She had the flu in February 2016 — she went from 60 lbs to 49 pounds a lot of muscle deterioration affected her swallowing. Also follow up mri cerebellum is 90%. Atrophied with diffuse white patches through out cerebral hemispheres.
I hope I don’t sound like a broken record when I say, do what you can to spread these stories of the kids who fight VWM…spread awareness …and donate if you can.
Written by Jenna’s mom.
