“While shunts are simple to place, they frequently malfunction. Hydrocephalus is a serious condition, which, unless treated properly, could prove fatal. Hydrocephalus is primarily an excessive accumulation of fluid in the brain. Today, he’s doing what he loves to do and is the proud owner of an IT company. An infant may be born with hydrocephalus due to a congenital condition or a child might acquire the problem later in life. Growing up Marcos faced multiple surgeries and long hospital stays. The … He was under the treatment of a Neurophysician and ENT specialist. While I was being born there were complications that resulted in the onset of hydrocephalus and the need for a shunt. Zoe is not even a year old but has already endured 13 surgeries. They told us that the Director of my orphanage paid for my surgery out of her own money. According to the Hydrocephalus Association, one to two of every 1,000 babies born in the U.S. will have hydrocephalus and more than one million people in the U.S. are currently living with hydrocephalus. Those were the words of Sofia’s mom when she first learned that her daughter had hydrocephalus and was going into surgery the very next day. Family members and friends remained very confused about her condition. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness. “She’s developing well and doing beautifully,” says Dr. Sandberg, who sees her annually in follow-up. At almost 2 years old, Jack has already endured nine brain surgeries to treat his hydrocephalus. Steven can't walk and has outgrown his crutches, so his mother has to carry him. Fax: 301-202-3813 Credit: Pixabay. What happens if you wake up one morning to crippling headaches and learn that you’ve had hydrocephalus your whole life? We believe strongly in taking advantage of any cutting-edge medical procedure to help our child.”. “We did routine MRIs, and she progressed well. But he has overcome it all with remarkable resilience. She is truly a tough little hydrocephalus warrior! As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. All rights reserved. Treatment is most commonly surgical with the placement of a CSF shunt. Prossy's son, Steven, was treated for infant hydrocephalus and spina bifida at the CURE Children's Hospital in Mbale, Uganda, several years ago. But that didn’t stop him from pushing hard in school. Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here! Since Harper’s surgery, Lowery has gotten to know two other families who have kids with hydrocephalus. Most children with simple hydrocephalus (no associated anomalies) that is diagnosed and treated early will function normally. OHSU Doernbecher provides state-of-the-art care for hydrocephalus. They did not have more money to put in a … CLICK HERE FOR IMPORTANT ANNOUNCEMENTS REGARDING CORONAVIRUS (COVID-19), main(713) 222-2273 Diagnosis is confirmed with neuroimaging (ultrasound, computed tomography of the head, or magnetic resonance imaging) showing ventriculomegaly. Her parents are very pleased with the result of the endoscopic procedure and how the rationale for it was explained to them. When the procedure works, it’s a home run for kids and their families.”. In infants with hydrocephalus, the first symptom is usually an enlarged head. Since Harper’s surgery, Lowery has gotten to know two other families who have kids with hydrocephalus. The signs of hydrocephalus as well as the symptoms may vary depending on the age of onset. Image by Bridget Huber. People also can develop normal pressure hydrocephalus for no obvious reason, such as in Dorothy’s case. After some ups and downs, her hydrocephalus diagnosis inspired her to live life with purpose and help others however she can. A sad fact is that Intraventricular Hemorrhage (IVH) is the leading cause of hydrocephalus in preterm infants and varying levels of IVH are very common in preemies, especially extremely preterm babies. My Hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. If your doctor suspects that your baby has hydrocephalus, he or she may order additional tests, including: Within the first year of placement there’s a 30 percent to 45 percent failure rate and a 4 percent failure rate every year afterwards for the rest of the child’s life. Normal pressure hydrocephalus (NPH): enlargement of ventricles without detectable elevations in ICP. Her biggest struggle is holding her head up. In spite of the best efforts by the neurophysician, the size of the head was increasing along with downward deviation of eyes. In addition, he cauterized the choroid plexus, which produces most of the CSF in the brain, in order to reduce CSF production. Hydrocephalus is not uncommon; some estimates report that 1 to 2 of every 1,000 infants are born with the disorder. If the hydrocephalus is congenital or acquired at a young age, infants often present with macrocephaly. Image by Bridget Huber. Amelia was born 20th august 2013 she had he back closure at 3 days old and she had her vp shunt fitted at 10 days old. Brianna grew up in and out of the hospital. “We were told that the soft spot on her head would bulge as a first indicator of failure of the ETV procedure, so for the first year of her life, I felt her head probably 100 times a day,” Lowery admits. With blood clots blocking the flow of cerebrospinal fluid (CSF), Harper’s head began to enlarge to accommodate the buildup, an indication of hydrocephalus. “Skylene saved the lives of 5 individuals through organ donation. Pediatric hydrocephalus can be damaging if left untreated, but with early diagnosis and treatment, children with hydrocephalus can often lead normal, healthy lives. Privacy Policy Terms and Conditions Sitemap RSS, Schedule an appointment online with ScheduleNow. Eventually as an adult, she was treated for hydrocephalus and it changed her life. Hydrocephalus; … But after undergoing brain surgery for a #shunt, she refused to let her condition stop her from enjoying the outdoor adventures she always loved. There were 64 infants with post-infectious hydrocephalus and 36 with non-post-infectious hydrocephalus. Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. Ultrasounds are used to view internal organs as they function, and to assess blood flow through various vessels. CSF is a clear fluid that bathes and protects your child’s brain and spinal cord.Ventricles are the spaces in the brain where CSF is made. How does hydrocephalus affect my baby? Besides the Chiari 2 malformation, there was no sign of hydrocephalus. My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition. When the infant was two days old, surgery was performed to implant a ventriculoperitoneal shunt with a … When I was 2 years old, I got an infection in my brain. An excellent survival rate is possible through treatment, which may be complicated and imperfect, but still, gives the baby a better chance at life than living with hydrocephalus. Uganda, 2014. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms. Prossy's son, Steven, was treated for infant hydrocephalus and spina bifida at the CURE Children's Hospital in Mbale, Uganda, several years ago. Hydrocephalus (pronounced hi-dro-SEF-a-lus) is a harmful buildup of cerebrospinal fluid (CSF) in the ventricles of your child’s brain. With blood clots blocking the flow of cerebrospinal fluid (CSF), Harper’s head began to enlarge to accommodate the buildup, an indication of hydrocephalus. Today she is a beautiful 7 year old who has the ability to open doors that will lead her over new horizons. Four years have passed since the surgery, and Harper has not required any additional surgeries for hydrocephalus. Approximately 75 percent of children with hydrocephalus will have some form of motor disability. COVID-19 Guidance for People Living with Hydrocephalus, Yes, I would like to receive postal mail from Hydrocephalus Association, Changing Treatments: Converting from a Shunt to an ETV for the Treatment of Hydrocephalus, Rhaeos CEO Shares Details About Wearable FlowSense Device, Local Mom on a Mission to Find a Cure for Son’s Brain Disorder, Two Sisters, Two Brain Disorders, 36 Brain Surgeries. – or brain bleeds – in both ventricles frequently among infants and toddlers the! While shunts are simple to place, they frequently malfunction live without regrets damage... Called congenital Toxoplasmosis condition called congenital Toxoplasmosis of an it company hemorrhage in which severe within... If the hydrocephalus is primarily an excessive accumulation of fluid in the brain, her hydrocephalus diagnosis inspired her live. Found her passion of becoming a pediatric nurse width, which can be congenital or in. Struggle in school and life has outgrown his crutches, so his mother to. 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