Stories

Christian Jones-Norquist was born to Brad and Steffanie Jones on November 22, 1998. He was developing normally until he and his parents were in a car accident on Christmas day 1999. His parents were killed instantly. Christian sustained a severe head injury, 2 fractured legs, broken jaw and was in a coma for a week. Doctors gave a grim prognosis. Christian was soon shunted because he had continued intracranial pressure. He was given a subdural shunt that quickly failed. A VP shunt was put in. He remained in the hospital for 4 months. Within those four months, he had 4 shunt revisions to reduce fluid accumulation and tubing problems. He also suffered from grand mal seizures, diabetes insipidus, panhypotuitarism (body doesn’t make hormones), respiratory problems and feeding issues (he was given a feeding tube).

In June 2000, Christian moved in with Skeets and Kim Norquist. He was 18 months old. He was able to sit up, smile, hold his head up and reach for toys. He had reverted back to the cognitive age of a 3 month old and could barely move. Doctors did not expect him to ever be able to walk or talk. Christian immediately began early intervention services, Occupational, Physical and Speech Therapies. He began to walk at age 2.5 and used simple signs to communicate. He eventually began to talk and now at age 7 hasn’t slowed down!
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JayLynn was diagnosed with hydrocephalus in utero at 21 weeks. She was born to proud mom Melissa on November 16, 2005 by C-section three weeks earlier than her due date. JayLynn weighed 5lbs, 6 ounces and was 16 inches long. She was was born at Tacoma General in Washington and is being followed by pediatric neurosurgery at Marybridge Hospital in Tacoma, WA. She has a very rare condition called rhombenencephalosynapsis in addition to hydrocephalus.This means that her cerebellum is fused. There have only been 40 cases reported since its discovery in 1914. So far JayLynn is doing well despite her hydrocephalus and fused cerebellum. She is very loved by her family.

JayLynn is scheduled to have her first VP shunt placed on February 21, 2006. We wish her well. JayLynn is a sweet little girl who is growing well and she loves her binky. JayLynn and Melissa live in Tacoma. Contact Melissa for more information about JayLynn at gizmo72085@aol.com.

Lizzie’s miraculous journey began October 12, 2005, when she was born at 26 weeks. I began bed rest at 20 weeks and was hospitalized at 24 weeks. We were guaranteed to deliver early. While this helped to prepare us, we had no idea what challenges would face our daughter immediately and long term. Lizzie spent 75 days on the ventilator, had a grade III/IV Intraventricular Hemorrhage (IVH), Patent Ductus Arteriosus ligation, mild Necrotizing Enterocolitis, Retinopathy of Prematurity and was diagnosed with “slow, yet progressive Hydrocephalus” as a result of the IVH. She went through surgery December 12th for a VP shunt. Since her shunt has been placed, Lizzie has had no ill effects. January was a month of rapid recovery: she was extubated January 5th, taken off CPAP and onto nasal canula on the 8th and went home on the 24th. She is amazing and such a blessing. Lizzie and her parents live in Buckley, WA and can be reached via email to SarahSunday@hotmail.com.

Madison was born November 26, 2004 a healthy 9 lbs.. She spent the first one and a half weeks of her life in a bilibed due to some stubborn jaundice. At her 2 week checkup her wonderful pediatrician Dr. Plonsky noticed her doing something odd with her eyes for a split second and decided to send us to the emergency room at Marybridge Hospital in Tacoma. There she had a CT scan and we were told there was a mass in her brain near her third ventricle. We were ambulanced up to Children’s Hospital in Seattle where a second scan showed the same thing. The doctors told us that it was in a sensitive area of her brain that they would not go into to surgically remove. An endoscopic biopsy would be done to try and determine what it was. We were told it could possibly be a malignant tumor in which case there was a chance Madison would not have long to live. After the biopsy we were given the good news that it was a blood clot. After time the clot would dissipate but in the meantime she would need an external shunt to help drain fluid and then a vp shunt would be placed after it cleared up to fix her hydrocephalus caused by the clot. After countless blood tests to determine why she got the clot in the first place (everything turned out normal) it’s still a mystery. Throughout the whole ordeal Madison was the sweetest baby. A year later she is still doing great and continues to amaze her mommy and daddy.

Marissa, born September 20th, 1991 at 36 weeks gestation. She weighed 5lbs. 10oz. and had her first VP shunt placed at five days old at Walter Reed Army Medical Center, by Dr. Richard Ellenbogen (while he too was in the Military) , now Chief of Neurosurgery at Children’s Hospital, Seattle. She was diagnosed with Scizencephaly, which by definition does not accurately describe her abilities, because Marissa has some splintered abilities within her academic and social life. Marissa has endured years of Physical Therapy, Speech, Occupational Therapy and some Feeding Therapies. She continues now to work on all of those therapies in school except the eating issues that dissipated through development. She has also had hip dysplasia and a right foot vertical talus and surgery on those issues at 4 years old. Marissa’s brain was severed at birth and filled with fluid which has continued to cause her balance issues and vision difficulties (near sightedness, strabismus). Since Marissa’s initial VP Placement she had her first malfunction in January 2000 (Y2K- bug) at age nine and another malfunction last year (2005) which required three surgeries to correct – it appears that her growth and development has affected her shunt. Marissa walks, talks, sings in choir, she played soccer for one season, and taken Horse back riding lessons. Currently, she is working on learning to play the piano, riding a bike, and attending general education P.E. In Jr. High School General Ed P.E. is very advanced where the children are asked to run everyday and on Friday take a timed running mile which is physically exhausting for her, but she always prevails. She has had some set backs from her last surgeries and it appears to take her a little longer to recover, but her overall health is amazing. Marissa has only had the flu once and never an ear infection in her life! Overall she is a happy- go-lucky teenager with some fine/gross motor delays, she attends Special Education at our local Jr. High School, and she loves to sing! Marissa also has two little brothers that she helps to take care of and three dogs. Please contact mom Kelly at Mk98505@aol.com if any questions.

Noah — Our sweet little angel came into our lives February 9, 2004 and made his entrance into this world a slow one. After almost 4 and 1/2 hours of active pushing he finally arrived and weighted 6 pounds 9 ounces. He was beautiful and looked so healthy on the outside, but because of the long labor he would experience damaging effects to his brain. Our first sign of this came 6 hours after his birth when he started having seizures and briefly stopped breathing. He was immediately taken to the NICU there at Overlake Hospital. After many tests and ultrasounds they discovered he had a bleed in his ventricles and a possible stroke. They diagnosed this as an Intraventricular Hemorrhage ( IVH) grade III and IV bleed. This would be the cause of his Communicating Hydrocephalus and would mean the placement of a shunt was necessary. He was transferred to Seattle Children’s Hospital and Regional Medical Center, where little did we know at the time would become our second home on and off throughout his first and half year of life. Here we would meet Dr. Jeffrey Ojemann the neurosurgeon that would save Noah’s life over and over and give us comfort through the many frightening and difficult times ahead. (click here to continue)

Violet was born 16th August 2005, a full term baby weighing a healthy 9lb 3oz. The day after she was born, a midwife suspected something suspicious about her head circumference and organised a head ultrasound be performed.This revealed that Violet had a bleed in her left ventricle that caused her to develop Hydrocephalus. She then had an MRI and this revealed another problem, she also has Microphthalmia (Small Eye) in her left eye and this has caused her eye to be blind. Her first Op was a Endoscopic Third Ventriculostomy  in November 2005, this unfortunately was not successful in controlling her Hydrocephalus. She then had her VP Shunt put in January 2006 and all is going well. We are thankful she is in our lives and is much loved by her family. See more of about Violet at her blog, www.violetsjourney.blogspot.com

William will always celebrate two birthdays: one on January 10, 2005 when he was born 10 weeks early and two days later on January 12, 2005 when the Seattle Children’s Infant Intensive Care team saved his life after he almost died of a pulmonary hemorrhage. His doctors, nurses and respiratory therapists had to “hand bag” him to keep him alive for almost 12 hours including during the ambulance transport because he couldn’t breathe on a ventilator. As parents, it is your worst fear to watch your newborn child wither before your eyes. Nothing can prepare you for it and nothing will ever make you ever forget. (click here to continue)

Send mail to lpoliski@hydrosupport.org with a digital picture and your child’s story (approximately 500 words or less) and we will post it here.