There are a Million Hydrocephalus Stories; This is the Story of Hannah

by HA Member Susan Andersen Moore

Our daughter Hannah has a programmable VP shunt for her hydrocephalus. Here is a little of her story.

Hannahhannah and her brother mugging was born sometime in May of 2002. She was abandoned at 4 months of age on the footsteps of the Social Welfare Institute in Luohe City China. She was terribly emaciated, underweight, and sick. She had been born with thoracic myelomeningocele (Spina Bifida), and had not had corrective surgery. She was the first baby left at the institution, since it had been expanded to take care of special needs children in addition to the elderly care center that had been running for years. She had no name, no background, she only had the mattress ticking that she had been swaddled in. The people at the SWI named her “Dang Miao Miao”. Miao Miao means the heart of the tree.

The Director at that time, was a woman with a very big heart. We were told that she paid for Miao Miao’s surgery from her own pocket. It was then that they had realized that she also had Hydrocephalus. They put in a VP shunt, and Miao Miao started to come into her own, she put on weight, and blossomed under the care of the ‘Aunties’ & ‘Uncles’ at the institute. Somewhere around the age of 2, she started to have problems with infections in her shunt. She was taken back to the hospital where they removed most of the shunt, (there’s still a piece that is stuck in her brain), and did not replace it. Three years later, we received Miao Miao’s file to review. We knew from the second we saw her picture and read her story that she was our daughter. No child should be without the love of a family when they needed medical care. We put in our acceptance to adopt her in June of 2007, and brought her home for Christmas December 21, 2007. We named her Hannah Eadan Miao Moore.

hannah at her schoolHannah’s first appointment with her Neurosurgeon was in January of 2008. After tests were run, and results reviewed, it was determined that Hannah needed surgery to relieve the pressure from the hydrocephalus as soon as possible. First, her surgeon did a ventriculostomy on her, in hopes that we could do without a shunt. Unfortunately, Hannah’s ventricles were too enlarged and the fluid too great to be absorbed, and it closed back up a few months later. Next, she had a VP shunt put in, and she improved so much in such a short amount of time. She had her pressure regulated and adjusted a couple of times after that when she would complain of headaches or nausea, but so far no revisions.

We kept thinking how lucky we were with all of her conditions that she was doing so well. No major scares until January of this year, when she couldn’t hold her head up and kept crying her head hurt so bad. Then the vomiting started, with no accompanying fever.  I knew it had to be something with her brain, & called her Neurosurgeon who met us at the hospital on January 1st, Happy New Year! After CT scans were done, Dr. O. came in to tell us that Hannah had developed ‘slit ventricle syndrome’, and they would need to pump her up with fluids to rehydrate her. She couldn’t hold anything down, she kept crying her head hurt even worse. She seemed to deteriorate more on day two, they reset her shunt again, and even more by day three reset her shunt again. So they finally gave her something for the pain, and she settled a bit, and finally went to sleep. They did a brain tap, found that the shunt was working properly, and readjusted her shunt setting once again. By day four, you would never have known anything had been wrong. She just wanted to go home.

Hannah is an amazing child (as I know all children are). Her resilience and positive determination to overcome difficulties that most children never have to endure humbles us. In addition to the hydrocephalus & thorasic Spina Bifida, Hannah has a Chiari II, tethered cord, CAPD, CPP (she has a Supprelin implant in her arm), convergence insufficiency in her eyes. Now here’s the most amazing part, Hannah is totally mobile, no catheter, no braces, no additional devices other than her reading glasses. She made the honor roll again this year at school. This is the same child that 3-1/2 years ago didn’t know a word of English. She has vision therapy once a week & aquatic therapy, to help retrain her eyes and increase her range of motion and balance. She takes dance, Chinese Folk Dance & Ballet, and jazz. She especially loves to cheer her brother Harrison on at the Special Olympics games (he has severe Autism). She doesn’t really see that she is any different than any of her peers. She has an amazing enthusiasm for life and learning & helping others. Her hydrocephalus may cause her some discomfort at times, and limit what she is allowed to do physically, but we think it has actually benefited her in that she is stronger and more determined to excel, despite it. She has hydrocephalus, but it is not who she is, it is just a part of her, like having black hair and brown eyes. She just deals with it.