The following clip from last night’s episode, explains that children born with Spina Bifida often develop Hydrocephalus.

I received routine ultrasounds throughout my pregnancy and was scheduled to deliver at 39 weeks which ended up being July 26th, two weeks before my 20th birthday. I had looked up pictures of babies with hydrocephalus and had done my research to prepare myself for what to expect at her birth. The day finally came and as I walked back into the OR, I had a feeling that everything would be ok. I knew I would love this little girl so much no matter what. After the c-section was performed, all I could do was wait to hear my baby cry… I didn’t hear anything. Riley wasn’t crying, she wasn’t breathing. All I heard was the code blue alarm sound and see a rush of nurses rush through the door of the OR. I prayed and prayed and prayed that I would hear her cry. Finally I heard the sound I was looking for. I heard her soft little cry and I thanked God that my baby was alive. After several minutes she was wheeled in next to me and I saw a beautiful, tiny face with small swollen eyes and a very very large head that wasn’t quite covered by the pink and blue beenie she was wearing. I kissed the air because I couldn’t reach her little face and whispered, “I love you baby.”

For the first six months of Riley’s life her doctors weren’t sure if she would see or be able to function at all. Because the blockage in her brain had caused so much fluid build-up, she had suffered a slight rupture in her brain. This meant no shunt because the possibility of her brain collapsing was so high. We continued to watch as our sweet blue-eyed baby girl became stronger and stronger everyday. She didn’t talk, crawl or even sit up on her own, but my gosh did she laugh and smile. That smile could melt anyone’s heart.

At age two and a half after two years of physical therapy, occupational therapy and speech therapy, she finally sat on her own during the Superbowl of all things! My husband and I just stared at her with out mouths gaping open feeling so incredibly proud of our little girl. After six months she was sitting on her own, playing with her toys and constantly showing off her huge, beautiful smile while she did it. Not long after, she hugged me for the first time… I cried and cried because I knew that was her way of telling me she loved me. I had waited 2 1/2 years for that, and it had been worth the wait.

She’s three now and is attending preschool with other little guys her age. She’s saying about 10 words now and uses them every chance she gets. She still can’t walk and will be getting her first wheelchair soon, but I couldn’t be more proud of her. She’s my little blue-eyed angel, my “little engine that could.” She fills my life with joy, even through the hard times. I love my little Riley and I’m so glad she chose me.

Working with researchers at the University of Utah, scientists at the Michigan-based institute studied a number of different shunts working “under a variety of conditions by creating a bioreactor that mimics the environment inside patients.”

“Tragically, practically all patients with hydrocephalus are at risk for shunt malfunctions, which invariably produce more brain injury, and most of these patients must undergo multiple surgeries to remove obstructed catheters,” said Pat McAllister, director of basic hydrocephalus research at University of Utah School of Medicine.

The institutes states nearly 61 percent of patients face complications of their shunt due to obstructions. The team’s research used the bioreactor to study how frequently cells stick to shunt catheters in different levels of flow rate, pressure change and pulsation frequency. A combination of these factors are unique to each patient, so the researchers could use the measurements, “mimicking” the individual patient to provide a more personalized and modified shunt.

“So actually our part was to image and quantify the effect of certain components to inhibit the build-up of scar-like cells,” said Dr. Jim Resau, one of the authors of the study. ”This approach could also be applied to other instruments inserted into the body, such as electrodes.”

To read the full press release on the study, click here. The website for the charitable foundation Seeking Techniques Advancing Research in Shunts also provides information on non-profit funding of research like this.

However, as one Glendale News-Press commentator wrote, some enacted measures potentially present exciting developments for patients and families dealing with child hydrocephalus.

“As a mother of a young child with hydrocephalus, a lifelong, life-threatening medical condition, all I can say is ‘Hallelujah!’” exclaims Shannon Raghavachary, a contributor to the Press.

Among the health care reform provisions she feels benefits her (and other hydrocephalus-affected families) include:

• No denial of child insurance for pre-existing conditions
• No lifetime limits on coverage
• Young adult coverage on parents plans until age 26
• Patient-friendly appeals processes

BusinessWeek provides a descriptive story on the details behind these, and more, provisions enacted today here.

Nonetheless, Raghavachary insists more benefits must come in the future: “These changes are a major step forward for people like us and our son who deal with serious and chronic medical conditions — but they don’t go nearly far enough.”

For more information, provided by the Obama administration, on the health care law and changes to insurance policy, click here. A convenient, patient-friendly guide to hydrocephalus insurance claims and appeals can also be found on this website.

How do you expect the new health care law to affect you? Does your family, child or self benefit from some of the enacted portions today? Please share your personal story below, as a comment, or write your own story here.

How you can help.

* Buy the stickers.
Buy three Gabriel’s Life stickers for $12. We will send you two stickers. Keep one and give the other to your favorite doctor or nurse, take a picture of them with the sticker and email it Gabriel’s Life info@gabrielslife.org we will post it to our site.

* Share your story.
A third sticker will be sent to a staff or cast member of ABC’s “Grey’s Anatomy” along with a copy of your hydrocephalus story (http://gabrielslife.org/share-story/) as it is posted on the Gabriel’s Life site.

* Ask your friends to buy stickers and be ambassadors for our campaign.

Why are we doing this?
We want more understanding of hydrocephalus within our community and the general public. This campaign will create opportunities for awareness on local and national levels and encourage the hydrocephalus community to think about solving the challenges of hydrocephalus in a new way.

Why does it make sense for a ABC and “Grey’s Anatomy” to care about hydrocephalus? Why should a Gabriel’s Life sticker appear on the prime time hospital television series?
The main character on ABC’s “Grey’s Anatomy” is a neurosurgeon, Derrick Shepherd, played by Patrick Dempsey. Because of the frequent failure of shunts (the dominant treatment for hydrocephalus) and the need for them to be revised, surgeries related to hydrocephalus and shunts are considered the “bread and butter” of neurosurgery. Because the Dempsey character would be very familiar with hydrocephalus (hydrocephalus has been included in two episodes) it makes sense that he would also know and support the mission on Gabriel’s Life. He would have and display a Gabriel’s Life sticker, on his locker, or laptop or desk. We are not asking that a storyline be created around Gabriel’s Life, we simply want the logo to be treated like a product placement on the set.

Why should this matter to ABC?
Simply, this is a powerful way to raise awareness of something that impacts the lives of many people. Network television shows have significant influence and reach, this gives ABC an opportunity to do good within the context of the show, while adding a significant realistic detail. It could be considered a pro bono product placement, and by participating ABC could bask in very positive attention. Doing good will make ABC look good.

Why does this matter to the hydrocephalus community?
Considering the number of people in the United States impacted by hydrocephalus, awareness of the condition is minimal and so are resources spent on research. This campaign will create opportunities for awareness on local and national levels. When the episode including the Gabriel’s Life sticker is broadcast, people from the hydrocephalus community will contact their local ABC news affiliate (we will provide a press release) and encourage them to do a story about how hydrocephalus impacts their community.

This is an ambitious project we need and appreciate your help and support. Thank you.
— The Gabriel’s Life Team

While attending a school for the blind in the San Francisco/Oakland area from September 1992 through April 1993, I was learning how to read and write Braille and other Independent skills needed for the blind and visually impaired.

From November 1992 through March 1993, I was constantly in and out of the Naval Hospital in the Oakland area complaining constantly of high eye pressure build up on my eyes. I was placed on a medication called Sulfadiazine for which was to control the flare up of the Toxoplasmosis.
Apparently this medication did not work and caused more problems.

Near the end of March, I was in the Hospital again with the same problem, when my eye doctor decided to do a Spinal tap procedure to see what was causing the problems in my eyes. When I received the results from that test, That was when I found out I had the Hydrocephalus.

In April 1993, my eye doctor(s) decided to try two eye surgeries to try and relieve the eye pressure build up that was measured at 35 in both eyes due to the Toxoplasmosis and Hydrocephalus. By the time August 1993, I was hospitalized again two weeks after starting my college courses from Victor Valley Community College. I had to drop all courses that semester due to the emergency surgery.

In 1995, I moved to Louisiana with my family. During the summer of 1997, my eye pressure once again reached a dangerous level in my left eye. This time causing a lot more damage in my eye sight. I now have less than 4 feet of vision during the day, and less than 1/2 foot at night due to the high pressure in the eye.

On December 19, 2003, I was working at Barksdale AFB at night when something happened. I lost my eye sight completely for 10 minutes, and when my sight returned I had a very sharp pain along my neck area as well as in the back of my head where the shunt was located. On December 20, 2003, I was hospitalized after a rupture in the tubing along the neck was found from the CT Scan. I was hospitalized for three days and out of work for six weeks.

In 2008, I moved to the San Antonio TX area with my family. I currently work at Lackland, AFB as a cashier, and also have moved my small business I started in 1996 to the area after 13 years in Shreveport, Louisiana. I started a Braille Services company that now provides a large selection of Braille Greeting Cards and Specialty gifts and other Braille Services. www.shadowsinthedark.com

At the hospital, I had the CT scan and saw the humorless surgeon who told me and my grandmother of the hydrocephalus diagnosis attributable to aqueductal stenosis. He didn’t mention the tectal glioma which we would not learn of until 18 months later after revision #11. He placed a catheter to drain spinal fluid externally, and I spent the weekend in ICU with my head sandbagged in place. Surgery took place Monday, and I was hospitalized for nearly two weeks afterwards. I went back to school two weeks after that, and the acceptance letter from Rice came one week later.

Starting with having my first shunt revision during what should have been my freshman orientation week, my academic career at Rice was severely hampered by a total of 20 shunt revisions before graduation one year late, as I had to withdraw from my original start of a sophomore year. The photo is me in December 1981 at home after six weeks in a coma. I weighed 136 pounds and could not walk.

At Rice I struggled with math and physics, but I delighted in history and language. I didn’t know how to articulate my problems, but I found almost by accident that MDMA (Ecstasy) and cocaine actually helped me think “normally.” I stopped using drugs shortly before ending an abusive relationship with a male graduate student in October 1984, and almost three weeks later I had the last shunt revision for almost 10 years while at a student conference in Fort Collins, CO.

Four more revisions in 1994, then an ETV in 2008.

Completed my first Master’s degree in 2008, in Information Systems from George Washington University. Just started work towards a Master of Public Health at University of Maryland.