Hydrocephalus:

Hydrocephalus is one of the most common congenital (present at birth) problems in children and the most common clinical problem pediatric neurosurgeons face. It happens to one child per 1,000 live births and is a major social, medical and economic problem. Hydrocephalus is almost always a life-long condition.

Cerebrospinal fluid (CSF) is important to the human body because it bathes and cushions the brain and quickly transfers signals between its different areas. A child with hydrocephalus, however, has too much CSF inside the ventricles of the brain.

The treatment for hydrocephalus - the shunt - has saved many lives, but there is no cure and shunting is not a perfect treatment. Up to 15 percent of children with shunts have painful problems during their lifetime, problems like infections or shunts that don’t work properly. This often means operating many times on a child to replace the shunt.

The beginning:

Jared Joshua Orner was born September 10th, 2009, he was approximately 16" long and a little over 5lbs. He was born with massive hydrocephalus, lower limb paralysis, clubbed feet, and fractured femurs. He was brought into this world against all advice of doctors, because we wanted to give him a chance.

Problems were discovered in utero at approximately 14 weeks that this little baby was special. The doctors couldn't figure out what was wrong with our baby at the time because it was to early to tell. But we knew something was definitely wrong. At 18 weeks pregnant, we went to CHoP for a fetal MRI, fetal EKG, and a level 3 ultrasound. The only information we got from that was that our little baby had hydrocephalus (which was called Ventriculomegaly at the time) most likely due to Aqueductal Stenosis, and lower limb contractures. As the weeks went on, our little baby's hydrocephalus had worsened. His head circumference was off the charts for his gestational age, and his ventricles which normally should not be larger than 10mm on each side were over 60mm on one side and over 20mm on the other side. Jared Joshua Orner was born September 10th 2009 by c-section, with extreme hydrocephalus, micrognathia, arthrogryposis/amyoplasia in his lower extremities, bilateral clubbed feet, knee and hip contractures, and very thin femurs. His head circumference at birth was 43.5cm. Both of his femurs were fractured during birth. He's also been diagnosed with probable Corpus Collosum Agenesis and Absent Septum Pellucidum which are both pretty common with massive hydrocephalus, cortical vision impairment, hearing loss, and infantile spasms. He has a G-Tube and Nissen for severe acid reflux. He his left hip was dislocated, due to Developmental Hip Displasia.

To this day, we still don't know exactly what caused all of this, but we fight on for what is best for Jared. This site is dedicated to his daily life, his struggles, and his successes. He's our hero, and has already surpassed expectations the doctors had given us. He's also our teacher, and we've learned so much about life and how to be strong.

Updates:

Jared is now over 2 years old, and has made some improvements since birth. He is severely developmentally delayed, and functions at between a 4 month and 6 month old level. His hip displasia has healed, and bones have strengthened. He laughs, he smiles, he babbles, he knows faces, and he loves baby einstein videos. He also fusses a lot, and doesn't tolerate sitting very well. He's currently about 32" long and 22lbs. His hearing has come back to almost normal after we were told he would need cochlear implants, and his vision is greatly improved since birth.