The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.
The PHF, Inc. is a non-profit 501 (c) (3) charitable organization and as such, all contributions are tax deductible to the extent allowed by law.
President- Kim Illions
Vice President- Michael Illions
On July 25th, 2005 at 8:11am our little miracle baby boy Cole, came into the world. Weighing just 7lbs, 4 oz, the baby that we were told wouldn’t survive, went immediately to the “well” nursery. Yes, he was born with Hydrocephalus, but to us and everyone who would come to know him, he was perfect in every way.
On the second day of his life, Cole had his first shunt placed. He came through surgery with flying colors. That turned out to be the first of several surgeries to combat problems due to Hydrocephalus. From even before Cole was born we were searching for answers and a support system on this condition called Hydrocephalus.
With the assistance of Cole’s Doctor and Nurses at his hospital, we were asked to be the parent liaisons to a new first of its kind in New Jersey Hydrocephalus support group serving the Tri-state area.
Working with other families, we are committed to funding a cure for Hydrocephalus and have started the Pediatric Hydrocephalus Foundation with that goal in mind. Our mission is to offer support and strength to other families dealing with Hydrocephalus, and with your help we will be successful.
Jennifer Westdyke- Secretary/Treasurer
Jeff Westdyke- Board of Directors
My name is Jennifer Westdyke and my son Jeffrey has Hydrocephalus. When I was 5 months pregnant, they diagnosed Jeffrey with the disorder, they told me my son would never live a normal life and that I should consider terminating the pregnancy.
At the time, I felt very alone and very scared. He was born 6 weeks early and his shunt was placed when he was 3 days old. Since then, he’s lived a fairly normal life. My main reason for being an active member with the Pediatric Hydrocephalus Foundation is to help and talk to people who find themselves in a situation like my own.
I want new parents, expecting parents, parents with older children who acquire the disorder to know, they are not alone! It wasn’t until after Jeffrey was about a year old that I found out about a very special group of people who had put together a support group @ the Neuroscience Institute at JFK Hospital in Edison. I was so happy to find them and I’m so happy to be a part of this very special foundation.
My time and energy is focused on helping to raise money and awareness and hopefully one day a cure for Hydrocephalus.
John & Mary Ann D’Oria – Board of Directors
Our daughter, Adrienne, was born in 1993. There was no “Google” and no “internet”, so when we were told that she had developed hydrocephalus at the age of 10 months, we were shocked. We had nowhere to do research and we had never known anyone with this condition.
When we signed for the VP shunt, our surgeon told us that this was a lifelong decision. Once shunted, you cannot go back. We knew that day that those words would stay with us forever.
Adrienne has since had more than 30 brain surgeries. We have seen her head cut over and over again. As she has grown into a teenager, we have seen how this affected her emotionally and physically.
When we met the members of the Pediatric Hydrocephalus Foundation, we knew that their mission was our mission. We want to help raise awareness, so children no longer have to endure these many surgeries and hospitalizations. It is time that these children had a voice.
There needs to be more research dollars available to find a cure for this horrible condition.
In 1993, there was no internet and no support groups. That has thankfully changed. Hopefully through PHF, we can reach more families and provide the support that they need for their children with hydrocephalus.
Mark & Michelle Janson – Board of Directors
On June 8th 2000, we were blessed with a beautiful baby girl, Allison. Unaware at the time, Ally had differences that would change our lives forever. Just shy of her first birthday, during an eye exam, Ally’s ophthalmologist noted she had swollen optic nerves.
Although asymptomatic, she was immediately sent by her neurologist for an MRI which confirmed she had hydrocephalus related to aquaductal stenosis. We interviewed several neurosurgeons, researched our options, and on July 9th, Ally underwent a Third Ventriculostomy. To this day, Ally has been shunt free, and despite other rare medical conditions, leads a fairly normal life.
We have become active with PHF, not only to meet families like us, but to provide opportunities for others. By providing support to new families and education to the local community, we hope to make more people aware of this life long condition. Also by helping to raise money, we hope to aid our local medical community in research and provide financial support to local families in need.
Our dream is to pay it forward to others, and that one day we can hold our heads up high and find a cure for hydrocephalus!
Petra Nickerson – Alaska State Director
In November of 2005, our very healthy 3-year old son Greyson became sick with what we thought was a bad stomach virus. He could not keep any food down and eventually had trouble standing up and keeping his balance. We were shocked to learn at the hospital that he had hydrocephalus, was in very critical condition, and needed emergency surgery to place his first shunt.
There had been no prior signs and we were completely blindsided and uninformed about this unfortunately rather common condition. Since then, Greyson has undergone four other hydrocephalus related surgeries and, while he is doing well, he is still dealing with issues such as frequent headaches.
In the last eight years, we have been learning as much as possible about the different symptoms of shunt malfunctions, possible new treatments, different types of shunts, and the ultimate search for a cure while at the same time trying to create a normal life for our son and his four siblings.
Yet we have not met any other families affected by hydrocephalus, something I want and need to change. My main reason for joining the Pediatric Hydrocephalus Association is to raise awareness, fund research for a cure, and support Alaskan families. Knowledge is power and support is vital – I know that we can provide both to families in the state of Alaska who are on a similar journey.
Lacy Merrill – Arizona State Director
I found out my daughter would be born with hydrocephalus during my 19 week ultrasound. Shocked and uncertain of our future my husband and I did what we could to prepare for the birth of our daughter. March 21, 2008 Carly was born 5 weeks early. She spent a week in the NICU before being sent home and had her shunt placed at 3 weeks old.
Carly suffered from developmental delays and through physical therapy and early intervention she has made amazing progress. Carly suffered shunt malfunction and in October 2010 she had her shunt revised. In addition to her 2 shunt surgeries Carly has had 3 other surgeries in her short 4 years of life. We are grateful for her shunt which has saved her life and for her wonderful doctor who made this happen.
Throughout my pregnancy and my daughter’s first 2 years I did not have anyone who knew what I was going through as a mother. I searched for groups on FaceBook longing for someone that I could share my worries with and hoping there would be someone else here in Arizona in the same situation. I had never even heard of hydrocephalus before my daughter’s diagnosis so I had to do my own research on this condition that was changing my life!
I joined the PHF because I don’t want other families to feel alone through their journey with this lifelong condition. The first step in finding a cure or better treatment is knowledge so we will be hard at work spreading awareness and raising funds for research.
Nikeisha Ramey – Arkansas State Director
Hey All, I decided that I wanted to make a change in the state of Arkansas and Raise Awareness and find a cure for Hydrocephalus.
My daughter Emorii was born October 17, 2008 at 25wks 4days, weighing a 1lb. 11oz. About 2-3wks after her birth, I was told that Emorii had
bilateral ventricular brain bleeds.
I was traumatized, (literally), I didn’t have a clue of what to expect with her diagnosis. Professionally, I’m a nurse and I’d heard of and seen one or two babies with Hydrocephalus prior to Em, but when I was hit with the diagnosis; everything that I practice day to day professionally left me.
This was real, I was a mom first, and experiencing a tremendous amount of stress and unexplained information and unexplained diagnosis and prognosis. I decided that I would do all that I could to find out about Hydrocephalus and try to find other people like me that at times needed encouragement and someone to talk to.
The world needs to know more about Hydrocephalus because so many of our children are affected by it and not enough support in raising awareness or finding a cure is being about it.
Carrie Awbrey – California State Director
I am a single mom of two beautiful girls; Kallie and Madelyn. On January 29, 2002 our lives were changed forever. A routine 21 week ultrasound revealed that our baby girl, Madelyn had hydrocephalus. We were scared. I asked if she would live. He said she will need brain surgery. Fourteen weeks later Madelyn came into our lives in a hurry. She was shunted at 12 hours old. She has had 25 revisions and one ETV procedure. She loves to sing, laugh and color. Having Madelyn has taught us patience, tolerance and acceptance.
For about 5 years we didn’t know anyone who had hydrocephalus or had children with it. We felt so alone. It was hard to deal with the constant hospital stays and surgeries. The last year has been really tough for us.
We are with a new and amazing neurosurgeon who has gone above and beyond to help Madelyn. I wanted to come on board with the PHF because I wanted to help others and provide awareness and help raise funds for a cure.
I want others to know they are not alone and that I/We are here for them. No parent should have to deal with this terrible condition alone.
Aimee Burns – California State Director
My name is Aimee Burns and I live in Orange County, California with my husband, Jon, and two sons Brayden & Ethan. Ethan was born premature at 28 weeks due to polyhydraminos. All 3 lbs and 8 oz of him was taken straight to the NICU after birth…little did we know that we were about to embark on the scariest emotional roller coaster of our lives. After about 2 weeks in the NICU we were told that during a “routine” head ultrasound that they found bilateral grade III bleeds. We were then told that we would need to watch it to see if it starts to resolve. As the time went on, his head started to measure too big so we were transferred to a children hospital in Long Beach and were immediately in contact with an amazing neurosurgeon.
At about 7 weeks old, Ethan was diagnosed with Hydrocephalus and went into surgery to place a VP Shunt. After a 3 month stay in the NICU, he was discharged…Only to be back in the PICU the next day. Over that next month he was in and out of the hospital. He started to throw up all his feeds and right after he turned 4 months old he was labeled as failure to thrive and began another long stay in the hospital. It took months, a scary infection and many surgeries for them to find out what was wrong. His tummy started to create scar tissue around the distal part of the shunt. They revised his shunt to a VA shunt and he was able to come home.
Ethan has endured about 17 surgeries in his little life and he powers through them like a little superhero. He is currently in a special education preschool and is amazing us more and more every day. He walks on his own and currently wears AFO’s on his feet to help keep his a bit more stable when walking; he talks and follows his big brother everywhere. On top of preschool 5 days a week, he has 1 hour of speech and 1 hour of Physical therapy.
He keeps us busy but I wouldn’t have it any other way. We were given this journey for a reason and I don’t want it to go to waste. It is so important to me that everyone knows about this condition. About the toll that it takes on these children lives. They have to live with the constant surgeries, the headaches and the therapies as a “normal” part of life.
My goal is to raise awareness for this condition, help raise money to go towards shunt research and hopefully one day find a cure. I want my son and all children that are affected to have the best quality of life possible. Ethan has shown me strength, hope and has made me a better person.
I am so thankful to be given this opportunity with PHF and I look forward to help PHF make a difference!
Christina Brown – Colorado State Director
Greetings from Colorado! My name is Christina and my son has Hydrocephalus. My husband and I had our first son, Micah in 2006. He is full of life, passion and smiles! We welcomed our second son Jaden in April, 2010. Jaden was much anticipated by all family and friends. He was born “healthy” and once mommy recovered from a c-section we were able to go home three days later.
Between Jaden’s well checks his head was growing at a very rapid pace. We have a history of other brain conditions in our family so we watch the kids closely for head size. We went and had an ultra sound done and were delivered the news that Jaden had a large amount of CFS surrounding his brain. I will never forget the first time I heard the word Hydrocephalus. After this we made a trip 350 miles away to see our wonderful Neurosurgery team at Colorado Children’s Hospital. On our first MRI I was blown away to learn Jaden had also suffered a Stroke along with a large amount of fluid on his brain. Jaden has been blessed to only have one shunt placed so far- sometimes I am afraid of when our luck is going to run out.
Jaden has brought me to a place in life where I would never have thought I would be. Jaden is now 2 and receives physical therapy, occupational therapy, speech therapy and soon to be riding therapy. He is a happy little jabber box and is truly sweet, kind and loving.
This journey has also made me more grateful and filled with gratitude for each day we have. I want to raise awareness and educate people about this life changing path that is so prevalent. I also hope to share all I have learned and learn so much more from being able to be part of the PHF and PHF Colorado, parents need support in this journey that will forever change our children’s lives.
Samantha Pacelli – Connecticut State Director
My Little Trooper, Luca, decided he wanted to arrive six weeks early. I call him my Little Trooper because he is my rock, my world, and has taught me to fight through whatever we face with strength, courage, and faith. Luca was born on May 23, 2010. Because he was early, he needed some respiratory assistance and had a VSD (minor whole in his heart septum) so he went to the NICU. Three days in the NICU, Luca ended up having a fever and so the doctors ended up doing a spinal tap and some other tests. His white blood cell count was high with suspicion of meningitis; in addition, other test results showed a subdural hemorrahage with enlarged ventricles in his head. Luca stayed in the NICU for another four weeks treating him with antibiotics for meningitis (although not sure if he had it) and to monitor his VSD and ventricles.
After almost six weeks in the NICU, Luca was able to come home and join his Mommy (me), his Daddy Vinnie, and his three step siblings, Kaitlyn, Matthew, and Noelle. Let’s not forget is doggie Alex too. Unfortunately, he was only home a few weeks before he had to go in for surgery. His head swelled two and half centimeters in five days. Luca ended up receiving the ETV (Endoscopic Third Ventricolostomy) surgery. Unfortunately, that didn’t work so he ended up going back in for a VP shunt.
We feel so lucky and count our blessings everyday. He is doing well and developing beautifully. He chats up a storm, in baby lingo of course, and is the happiest child.
I look back at this horrible time in our lives and realize that I didn’t have a clue as to what the doctors were even talking about, I also did not realize that this would be a lifelong “condition”. I looked for support groups in Connecticut and there was not a one. I want to be here to support other families in Connecticut with Hydrocephalus. I want to reach out, comfort, and educate them. There will be a “permanent fix” one day and I want to be a part in that too. That’s why I decided to join PHF to bring awareness to Hydrocephalus.
Susan Andersen Moore – Florida State Director
My name is Susan Andersen Moore, & I live in sunny Orlando with my husband Richard, & our four amazing children: Harrison, Hannah, Haven, & Hailee. Two of our daughters have hydrocephalus.
Our story may be a little different, in that all of our children were adopted, and all have varying neurological conditions, but the impact that the condition of hydrocephalus has made on our family, has been just as challenging & frightening.
Our daughter Hannah was born with Hydrocephalus & Spina Bifida. We adopted her at the age of 5-1/2 years of age, from China. Prior to our adoption, we found an incredible Neurosurgeon who was kind enough to review Hannah’s CT scan and medical records. He explained her condition, so we might understand better the risks, & what care she would need. Hannah has had a number of shunt revisions, an ETV, she’s been hospitalized for slit ventricles twice in the past two years. She has developed other conditions attributed to Hydrocephalus CPP, convergent strabismus, Auditory Processing Disorder, & Epilepsy. Our daughter Haven was adopted at age 7, with Hydrocephalus which caused her Macrocephaly, Hypotonia, CPP, & a number of vision issues. She has received undergone surgeries for an ETV, Shunt placement, & hormone implant, as well as numerous therapies to help her live with the health impairments that cannot be corrected surgically.
Because of our precious girls with hydrocephalus, I feel I have been given the responsibility to advocate for any child living with this debilitating condition. The ratio between the funding for research for a cure, and the cost of treatment for Hydrocephalus is so ridiculously out of balance. I am committed to working with the PHF to help to educate & increase awareness with the general public & our legislators about Hydrocephalus here in Florida. I want to be available to encourage & support our families who are affected by this incurable disorder, & to help them find the resources they need to better advocate & protect their children in school & in the community. I share the vision of PHF to fund better treatments & research for a cure, because no child, no family, should have to endure the constant fear for what could happen next, that living with hydrocephalus creates.
Brittany Lowery – Georgia State Co-Director
Hi my name is Brittany Lowery. When I was 17 weeks pregnant with my second son, James, we found out that he has Hydrocephalus. Before he was born we searched for answers and researched this condition. It was hard at first and I felt completely alone in this world. The more and more I researched the better prepared I felt but nothing would have prepared for what we went through. By the time James was 18 months old he had already had 15 surgeries, 13 of which were shunt related! James is almost 3 years old now and receives Physical Therapy, Occupational Therapy, Speech Therapy, and does Horseback Riding Therapy weekly.
I decided to join the PHF Team to help spread awareness for Hydrocephalus and help raise money to help fund a cure for all the children and adults with this condition! I want to help ALL parents of children with Hydrocephalus know that they are not alone and there is hope!
Amanda Klebe – Hawaii State Co-Director
Aloha! My name is Amanda, but friends and family call me Mandy. As I write this, my husband BJ and I have been married for 3 1 /2 years, and we have an amazing 2 year old son named Brian, who will turn 3 in a couple of months.
On our 2 month anniversary, my husband (who is in the Army) deployed to Iraq. 2 days later, I found out that I was pregnant. I was living in Oklahoma at the time. I had an easy, problem free pregnancy. No problems for me, and no indication of anything out of the ordinary with Brian. All of that changed on June 8, 2009. Luckily, my husband was able to come home on leave when I was due to have Brian. During labor, Brian became distressed and his heartbeat was weakening. They took us back for an urgent c-section. When he was born, he was not moving and was not crying. Later I learned that he did not breathe on his own right away. Because of that, he was taken to the NICU. When the NICU nurse came into my room with my husband to tell me that Brian had hydrocephalus, I was completely caught off guard. I asked what this meant as far as long term effects for Brian, she said that he could possibly have brain damage, and that we would just have to wait and see. The next day, Brian was taken to The Children’s Hospital at OU Medical Center. He had a VP shunt placed at 3 days old. He recovered from the surgery quickly, and was able to come home at 11 days old.
Before Brian was born, I had only heard of hydrocephalus from a program that I saw on TV that made it seem like it was a very rare condition. My husband had never heard of it at all. I was surprised to find out how common it actually is. When others learn that Brian has hydrocephalus, we usually have to explain what it is because most people that we have told have never heard of it either. It is clear that awareness needs to be increased.
Last year, while living in Georgia, I found out about that PHF and we were happy to participate in the PHF Walk there. When my husband received orders for Hawaii, I found that there was no PHF chapter here. Not only was there no PHF chapter, I was not able to find any hydrocephalus related organization or support group. That is why I decided to look into becoming the PHF Hawaii state chapter director. I am honored to be able to help establish a chapter here. I am happy to have this opportunity to help raise awareness, establish a support system for other children living with hydrocephalus and their families, and to help “fund a cure”!
Brian is now a happy, healthy little boy. We are thankful that his shunt placement has been his only hydrocephalus related surgery. Unfortunately, we are much too aware that that all could change at any moment. We look forward to a day when shunt failure is not at the top of our list of worst fears, and a cure has been found for this condition.
Shaula Tualaulelei – Hawaii State Co-Director
Aloha from Hawaii! My nephew Christian Kapono Tremaine was born on January 6, 1999. He has been labeled a miracle child since birth and continues to amaze us as he battles with Hydrocephalus. He has endured many brain surgeries, and it is because of his strength, I feel committed to make a difference.
My sister Shaurell (Christian’s Mom) has been his biggest “Hero” (as all you mom’s can relate to) through his lifes challenges. It is my mission to help raise awareness, provide support for families, and help “FUND A CURE” here in Hawaii in support of the both of them. I am really excited to be apart of the PHF Ohana ( family)
Carol Jackson – Illinois State Director
Delaney was born in September 2010. Between 6 and 9 months her father and I grew concerned about her gross motor skills, as she was not making the progress her two older sisters had made. At her one year check up I mentioned this to her pediatrician. A few weeks after Delaney’s appointment, she developed clonus in her legs and her pediatrician ordered a MRI.
On December 20, 2011, Delaney had the MRI. The doctors found that her ventricles were enlarged and she had a large Posterior Fossa Arachnoid Cyst. The very next day she had surgery to place a VP shunt. Two months later Delaney had to have a shunt revision surgery. After that surgery, she was a different little girl. She made wonderful progress in speech, occupational, and physical therapy.
In September 2012, Delaney got a shunt infection. She ended up staying in the hospital for 30 days. During that hospital stay she had a few surgeries, including an ETV surgery. So far the ETV procedure is working and Delaney is shunt free. She continues physical therapy and is a happy, active, little girl.
When Delaney was first diagnosed with hydrocephalus, my husband and I knew very little about the condition. We found the PHF website. It was very helpful and comforting to read how other families were dealing with similar situations. I decided to get involved with the Pediatric Hydrocephalus Foundation to help raise awareness about hydrocephalus in my community. I also want to help raise money to provide more research for this life long condition.
Megan Elmore – Indiana State Director
I was so excited to find out that my second child was a girl, but my enthusiasm was quickly crushed when the nurse told me that something was wrong with her head measurement. I had to sit through a two-hour scan later that day and the phone call that followed with the results will live with me forever. The nurse told me that there was indeed fluid on my babies brain and that I was scheduled to see a Diagnostic OBGYN the next Monday. The final scan was so hard because I was surrounded by this team and having to keep myself composed while they told me that my daughter had a severe case of Hydrocephalus and he wasn’t sure how high-functioning she would be. I had never in my life heard of Hydrocephalus! Abortion was NEVER an option, we were going to fight this head on.
My daughter Aila has proved everyone wrong since the day she was born. For a little girl that is missing most of her Cerebral Cortex, she is blooming! She was expected to spend two weeks in the NICU post-surgery and only stayed six days. The milestones keep happening for her. She has taught us what strength and perseverance really are.
I am doing this for Aila. She has fought so hard for me I owe her this. She deserves an advancement in research as do all the Hydro patients out there. They fight everyday for a normal and happy life and I feel like they are due for a break. I know its out there. I have faith that God is guiding someone out there to find that cure and as long as I have a voice I will support the men and women who are working everyday to end this condition. Until that day I want to do all I can to raise awareness of Hydrocephalus and let families know they don’t have to face it alone.
Jaclyn Carnahan – Iowa State Co-Director
Hello from Iowa! Our son, Thomas, is 4 years old and has congenital Hydrocephalus. My husband and I were at our routine doctor appointment when I expressed my concerns about not being able to feel my baby move. I was 24 weeks and he scheduled a routine ultrasound just to reassure me everything was fine. After the ultrasound, our doctor said he noticed these “black pockets” in the brain and was pretty sure our child had Hydrocephalus. We were both very shocked and asked what is Hydrocephalus? We were then sent to the University of Iowa Hospitals and Clinics and were now considered a high-risk pregnancy. This was the scariest time of our life; not knowing what to expect, or what we would hear next. They told us our baby would never be a normal child. I had another ultrasound performed at the University of Iowa Hospital, and at this ultrasound the doctor told me my baby had Hydrocephalus and Dandy Walker Malformation. We were in total disbelief and very scared. In the consultation room, I was an emotional wreck. I wanted to ask the doctor many questions, but I just couldn’t find the words. The doctor assumed I wanted to abort the pregnancy and asked if I wanted information about abortion. No way did we want that, I simply wanted more information about this malformation and Hydrocephalus condition.
Finally, the day arrived when our little angel, Thomas, was born. He was sent to the NICU right away and an MRI was performed. Finally after a long ordeal, we were told our son did NOT have Dandy Walker Malformation or Hydrocephalus, so we were sent home. At 18-months my son got really sick and was in the hospital for two weeks. It got to the point where Thomas could not walk, sit, eat or drink. A CT scan was performed and showed enlarged ventricles and he indeed had Hydrocephalus, but not Dandy Walker Malformation. We were then rushed to the University of Iowa Children’s Hospital where Thomas was shunted. I joined the Pediatric Hydrocephalus Foundation to help other parents and mothers that face our similar situation and to children that live with Hydrocephalus. I want to give SUPPORT and HOPE and want to provide awareness to fund a CURE for Hydrocephalus. God’s blessings to all!
Sarah Wilson-Kraft – Kentucky State Director
My name is Sarah Wilson-Kraft. I am a single mother of Payton who is now 10 years old. He was born at 32 weeks and suffered numerous difficulties for the first few days of his life. Although he was in the NICU in Bethesda, MD for 3 weeks and hooked to all kinds of monitors, he was not diagnosed with Hydrocephalus until we went for his 2 yr. check up, by this time we had moved to Kentucky. The doctors and nurses measured his head 13 times and couldn’t believe how large it was.
We were sent for a CT scan on a Wednesday and before we returned home from the appt. there was a message on my answering machine to call the Neurosurgery office in Nashville, TN asap. I returned the call and the nurse informed me that Payton was scheduled for shunt placement Friday. I had no idea what a shunt was and they still hadn’t told me what was wrong. So, being a full time student at the time and being completely uninformed I asked…”Can we postpone this for a month until my finals are over?” Needless to say the answer was “No.”
Since his diagnosis, Payton has undergone several more surgeries and infections and most recently underwent ICP monitoring. We have spent countless night in hospitals in many areas including KY, MD, OH, and TX. His treatment is now taking place at Monroe Carroll Children’s Hospital in Nashville, TN because there are no hospitals that can handle his issues near us.
Currently, Payton suffers from Idiopathic NPH, seizures, ADHD, OCD, Disruptive Mood Regulation Disorder, Anxiety Disorder, and has some difficulties in school. Although Payton has all of these issues he is the most wonderful child. He is very bright and progresses in every area of life…although at a slower rate than other children his age.
Our reason for joining the PHF is that we want to help other children in our area that suffer from the same issues that Payton does and to be there for their families. This illness is a difficult one to accept, especially when there is no apparent reason for it. It can leave you feeling helpless and alone. We hope to raise awareness about this disease and to help find a cure for it in any way that we can.
Rebekah Wright – Louisiana State Director
My name is Rebekah Wright, I’m married with 2 daughters, Lauryn and Addysen. Lauryn has Hydrocephalus she was 14 yrs old when diagnosed. I remember that day like it was yesterday, I was at work and got a call from her doctor with the results of a recent CT scan. As he told me the results and his plan of treatment I held it together for the call then lost it. I work in healthcare so I knew what Hydrocephalus was and the severity of the disease. All I could think of was ok we can handle this. Even though I knew about the condition I felt alone and scared. I tried researching support groups in Louisiana and couldn’t find any. Lauryn was shunted 2 days before her 15th birthday and we continue to deal with her condition on a daily basis.
You never want your child to go through something like this and you never realize how important support is when you are trying to deal with this. We had many questions that only other people dealing with her condition could answer. I decided to join Pediatric Hydrocephalus Foundation for this reason. I wanted to be there for the next family and help find a cure for this. You shouldn’t have to go through this alone and Lauryn and I are committed to helping the next family through their journey with Hydrocephalus.
Denise Sacharczyk – Massachusetts State Director
Isabella Ruby was born in 1998 on the first day of fall and we waited five long years for our precious baby girl. But shortly after she is born she is diagnosed with bacterial meningitis, she has a stroke and seizures. She must spend many weeks in the hospital to receive heavy doses of antibiotics. The day after we take our little baby girl home we are sent for an MRI and her Neurologist sends us to the hospital, Isabella needs emergency surgery to put a shunt in she has Hydrocephalus caused by all the damage in her brain from the meningitis and the stroke.
We rush back to the hospital and she is then rushed to Boston Children’s Hospital where they do emergency surgery at 1 am on Thanksgiving Day. We are alone and scared. No one explains to us what exactly hydrocephalus or a shunt is. They do not even show us what a shunt looks like. I will not even see what one looks like except in a book that I research myself until Bella does her science fair project in 2010.
She is the most beautiful person I know. She has had 17 brain surgeries to replace her shunt or revise it.
In 2011 she had 6 of these surgeries, including the insertion of a left shunt. So she would have a right and a left shunt, due to the non-communication of her ventricles. During this surgery they perforated her bowel and did not know it of course. So when we were getting her ready to go home she got a fever of a 104.
So they rushed her back to surgery and found the perforation and had to repair that and they also had to externalize her two shunts until the bacteria was gone. She was once again a very sick girl. She was in the hospital for another month. This time during Christmas. It took her a long time to recover from this experience.
Then in 2013 she has 3 more replacements. She now has a right shunt that is a programmable shunt and a VPL shunt on the right side. They both drain in her lung cavity.
She has severe spasticity in both of her legs and arms and this makes it very hard for her to walk and do small motor activities. She falls a lot and sometimes has bad days where her legs just don’t work right.
Isabella is a wonderful 15 year old teenager that works very hard to get good grades and she did her science fair project on her shunts and it went all the way to Semi-Nationals. She is working on furthering her project. Isabella is my inspiration. She is the love of my life. She has overcome so much to get where she is today.
Hydrocephalus is a challenge for Bella everyday. There is not a day that goes by that she does not have a headaches, shunt pain, pressure in her head. There is not a day that goes by that she doesn’t fall down or bump into something or someone because her balance and spasticity is so bad. Her shunts malfunction and her shunts hurt her all most everyday.
We need to tell everyone that hydrocephalus is real, its brain surgery, not just one time but many times. And our children could die from this non-curable illness. Share your story. Share Bella’s story.
Hydrocephalus is the most common reason for brain surgery in children.
NiCole Atkins – Massachusetts State Director
July 31st 2007 was a day that changed our lives forever. I was 35 wks pregnant with our second son. I went in for a routine ultra sound to check my son’s size, I wanted to attempt a VBAC with him and try to avoid having a second C-section. That ultra showed something terribly wrong with my unborn son. The tech left the room and came back saying I need you to wait in the waiting to see the doctor. I thought nothing of it, because I had an appointment the next day. So my husband and I sat and waited, the doctor came to get us and told us, there is something wrong with our son and she didn’t know what it was. We wanted to know, she couldn’t tell us anything. So the very next day I had appointments lined up with Brigham & Woman’s, and Children’s Hospital Boston to see a large list of doctors and a fetal MRI.
August 1st 2007 a day I will never forget. After a fetal MRI and a level ll, blood work, it was discovered that my unborn son suffered a stroke (IVH) in his Thalamus and as a result he acquired severe Hydrocephalus in a matter of weeks. They believe the event took place close to 30 weeks. Our 18 & 20-week ultra sound showed a perfectly healthy baby. Our hearts of course were crushed. I couldn’t believe my son had a stroke, I only thought it was something that happened to the elderly. The thought my son was going to undergo brain surgery as well was a lot to process. Some many thoughts were flying through my head, what was his life going to be like, everything. Would he ever enjoy his older brother Joseph? What would his life be like? So many questions, concerns, and worry.
Benjamin Thomas Atkins was born on August 15th 2007, he was shunted at 7 day’s old with ventricles measuring 38-40mm. Ben has had two brain surgeries one to place his shunt, and another was an emergency ETV at 11 months old to unclog a cyst build up that caused a blockage in his left ventricle. Ben had a very slow start, but he thrived! He has mainly had motor issues, he didn’t walk until he was 21 months. He only receives Physical & Occupational Therapy. Today as I write this Ben is 4.5 years old, he is a typical child. He is smart, funny, an active 4 year old that is so excited to be starting Kindergarten in the fall. He may have two scars on his head, have a limp from his stroke and never be able to wiggle his precious little toes. But, but he shows me everyday how strong he is! He has overcome so much in his short life, I’m not thing but proud of him and all he has accomplished. I know I can’t see what the future has in store for him; I don’t know how many surgeries’ he will have in his lifetime. I don’t know if one day it could set him back. There are many things I don’t know…. But what I do know is that he is a fighter and we can get through anything.
The hardest part for me and the world of Hydrocephalus is how it affects everyone so differently. It’s not like having a kidney or heart condition when you know what the outcome, treatment, and long-term affects are. Most of the time there is no long term anything with something like that. But with Hydrocephalus, it’s the brain, it’s a lifetime of not knowing what will happen next. I hope in my son’s lifetime there is a cure, or at least a better treatment for the condition that leads to not so many surgeries.
Jason Adams – Michigan State Co-Director
My wife and I have been married for 17 years and are grateful to God for the beautiful family He has blessed us with. We have 4 children from 4 years old to 11 years of age.
Hawke is our 4th child and has a miraculous story! Hawke and his twin brother Jaxon were diagnosed with TTTS (Twin to twin transfusion) at 19 weeks, a rare condition where the identical twins share blood vessels. TTTS can be a fatal condition for the babies.
With only 15 doctors in the nation performing the lifesaving surgery we were blessed that a Doctor in Michigan was experienced in treating the condition with laser ablation. With the babies in the womb he burned the sharing vessels. The surgery was a success (Praise God).
Unfortunately, early labor is a side-effect and my wife was hospitalized on bed rest for six weeks. Thanks to our amazing family and church family I continued to work as they helped take care of our girls at home.
This was one of the most challenging experiences in my life and little did I know more was about to come. Hawke and Jaxon were born May 14th 2008. The boys’ hearts had stopped beating in the womb and after 12 minutes God breathed life into our son Hawke! We were devastated when Jaxon went to be with the Lord but celebrating that we had Hawke.
After 3 days in NICU, as a result of Grades 3 and 4 brain hemorrhages, Hawke was diagnosed with Hydrocephalus. I’ll never forget that meeting with family and doctors. Hawke would overcome many obstacles over the next 3 months in NICU. At times, we were unsure he would ever get to come home with us. He had his first shunt placed 9 months later. Hawke has had ten brain surgeries due to shunt complications including over-drainage.
Hawke is one of the sweetest boys you will ever meet. His infectious smile is contagious. His big sisters and little brother are incredible with him. I am excited about fighting for a cure, fighting to raise awareness and seek better treatment options. Being CO-Director of the Michigan PHF gives me (us) an even greater opportunity to make a large impact on Hydrocephalus community! Shunt technology has a long way to go and I want to have a part in kick starting the progress!
Awareness is lacking, to say the least, and research requires a leap of progress. Who says WE can’t make a difference? We can and we are making a difference!
Donna West – Michigan State Co-Director
My husband and I have been together now for 12 years. We have 4 beautiful children ranging in ages from 11 to our youngest, whom is almost 8 months. It is our youngest that has brought us here to the PHF. It was a slightly troubled pregnancy, with a very easy delivery to a perfectly healthy baby girl on Dec. 24, 2010. We really had no clue what was in store for us at that time.
When she was about a month old she started to have this really awkward head position when in the car seat. At her two month checkup we asked the pediatrician about it, and she said to schedule a head ultrasound, but that she was pretty confident it was really nothing at all. Well, that “nothing at all” turned into something even she did not expect to find… Hydrocephalus ex vacuo was our first diagnosis. We were told she had a significant loss of white brain matter and that was why she has hydrocephalus. After making numerous appointments with specialists that were set for a great length of time away, she proved the doctors wrong!
April 26th, at 4 months of age she had her checkup and her head had grown 5 cm in only 2 months! The pediatrician was alarmed and so she sent me to the ER. That was when we had our first shunt placed. To make an even longer story short in the next 11 weeks she would endure 8 surgeries; 3 shunt placements, 4 EVD’s, and 1 surgery to reopen the second shunt site to pack it with some material as it was profusely leaking. After the last shunt was placed, the neurosurgeon informed me that her brain is indeed there and starting to form and come off the skull! It had indeed developed; it was just pushed against the skull the whole time.
During all of this, it was very hard to find local information, support groups, or anyone who knew anything! Yet, I found the PHF and they immediately helped me out despite the distance. Without their help and assistance, I do not know where I would be. Also during this journey I have met some other families who are going through this journey and meeting them was chance at best, but we have all said the same thing… where are the local resources? Well that is why I have decided to become a Co-director for the state of Michigan and be the local resource for many.
Nakeshea Brown – Mississippi State Director
“Yesterday is history, tomorrow is a mystery, today is a gift of God, which is why we call it the present.”
My name is Nakeshea Brown. I was inspired by my 13 year old son LaTaeveyon Tucker who is a strong and remarkable young man that has been through a lot during his life time and has experienced more than what some adults will during their entire life time.
Hydrocephalus (water on the brain) is a chronic condition that does not have a cure and can be life threatening if left untreated. Individuals who suffer from hydrocephalus have other disabilities as well. Hydrocephalus is a buildup of cerebrospinal fluid (CSF); which is clear fluid that surrounds the brain and spinal cord. Hydrocephalus is currently being treated with shunt systems that are imperfect devices. Hopefully, research and fundamental studies will find a better way to prevent, treat, and ultimately cure hydrocephalus.
LaTaeveyon was born with hydrocephalus on February 22, 2000 at the University Medical Center in Jackson, Mississippi. I welcomed my 6lb and 11oz bundled of joy into this world with open arms at 11:17am. He stayed in the Neonatal Intensive Care Unit (NICU) for almost a month, before I could bring him home. When I was 8 months pregnant, I found out my son had hydrocephalus. This is when our lives changed forever. I did not know what to expect or what would happen, but I knew our lives would not be the same. LaTaeveyon was born with an encephalocele, hydrocephalus, missing his fourth ventricle in the back of his brain, chiari malformation, chronic subdural hemorrhage, dysgenesis of the corpus callosum, and possible porencephalic cyst along with many other health problems and conditions. Just to name a few, he has had about 12 or more surgeries ranging from a VP shunt being placed two days after birth, shunt revisions (8 or more), eye surgery, craniotomy, tonsillectomy, hernia repair, biopsies, cysts, tumors, infections, seizures, and suspected glaucoma. I have watched my son endure and overcome many surgeries and impediments. “All of the scars are just a reminder that God is still in control of our situation, prayers are being answered, and we are being blessed.”
He truly is a miracle and blessing from God and I am thankful everyday. “I believe in my heart that God gives special children to special people. It has been a challenge; but the key to life is accepting challenges. Challenges are what make life interesting; overcoming them is what makes life meaningful.”
My main reason for becoming the State of Mississippi Chapter Director and being an active member with the Pediatric Hydrocephalus Foundation is to make a difference by improving the lives of those diagnosed with hydrocephalus and to increase hydrocephalus awareness while funding worthy scientific research to help find a promising cure. Also, I will work vigorously to help families of children affected by hydrocephalus and to be a positive voice in the hydrocephalus community. I want other parents to know that they are not alone and we are here with open arms. “The only limit to our realization of tomorrow will be doubts of today. Let us move forward with strong and active faith.”
Casey Simino & Anthony Simino – Missouri State Directors
My husband and I have been together for more than 13 years and married for 7. We have 4 amazing children of which Ayden is our second born. He is currently very soon to be 7 years old and in 1st grade. Ayden was born at 11:11 am on February 23rd, 2006. He had already been diagnosed with porencephaly and partial agenesis of the corpus callosum and the doctors knew he was at risk for hydrocephalus. He was delivered by planned C-section at 37 ½ weeks after an amnio showed mature lungs, and we were as prepared as we could be. We had already met with the neonatologist and he and his team were in the operating room waiting for our little guy with us. We were at the best hospital in the area with the highest level NICU. Still, I couldn’t help feeling an impending sense of doom. It took all of half a second for Ayden to fill the huge room with his monstrous screams. Of course, he was perfect. He was even allowed to stay with me on the way down to recovery and visit for a few minutes. Then they took him, and I wouldn’t get to see him again until around 11pm when they were fed up with me throwing a fit and allowed me out of bed to visit him. He was in the Special Care Nursery (not even NICU!) and was hooked up to lots of monitors, but nothing else. The next day he went for his first MRI on his own and a head ultrasound.
Aside from a little bout with jaundice, his first three days of life brought nothing eventful. After we found a pediatrician (our current was a family practitioner and very honorably admitted that he didn’t feel comfortable caring for Ayden and preferred that we find an actual pediatrician) and scheduled an appointment with the neurosurgeon, Ayden was cleared by the neonatologist and neurologist to come home on day 3. Ayden was born on a Thursday, went home on Sunday, and had his first appointment with his pediatrician that Tuesday. At that appointment his head measured 36.1 cm; a little on the large side, but not terrible. He had his appointment with the neurosurgeon one week later. At that appointment his head measured 40cm. It had grown nearly 4 cm in a week. The NS kept checking and rechecking. She even called the doctor’s office to make sure the paper I had with his measurements was right. She came back and tried to relay as best she could what hydrocephalus was and what it meant for Ayden. I’m pretty sure I heard nothing she said. I was given a pamphlet that appeared to date back to the 80’s and sent home with a promise of surgery.
Ayden was diagnosed on Tuesday and had his shunt placed on Friday, March 10th 2006, at just 15 days old. I was a wreck. I remember speaking with a nun who was volunteering in the surgical waiting room. When I told her the surgery my son was having she started telling me how she was a nurse in the 1940’s before there were shunts and how many children died as a result of hydrocephalus. I know she was trying to help, but that wasn’t a conversation I wanted to be having at that moment. Knowing all that I do now about this dreadful condition, I wish I had taken time to listen to more of what she had to say.
Ayden’s shunt functioned properly for a little over 3 months. He had his first revision in late June. In August we were back. He had an external drain placed for a few days and then another revision. While knowledge of the wrath of hydrocephalus leads us to believe that the list will go on, this is where Ayden’s stops for now. He endured 4 surgeries before he was 6 months old, but has been surgery free for nearly 6 ½ years. I KNOW that there is virtually a ticking time bomb in his head, but a girl can dream can’t she?
We are extremely lucky, however, in that Ayden is nearly unscathed by any of his diagnoses. He has very minor balance, coordination, and left sided weakness issues, only discernible by a physical therapist. We are watching what may develop into a learning disability, but we won’t know until he’s older. He is all in all a happy, healthy, thriving almost 7-year-old boy, whose larger than life personality inspires us every day.
My husband, Anthony, and I decided to join the Pediatric Hydrocephalus Foundation for a few reasons. We found in the beginning that most of what very little our families knew of hydrocephalus was the results of complete ignorance. We hope to raise awareness of this all too common condition. We were astounded to learn how little has been done to improve the treatment of hydrocephalus. We hope to raise LOTS of money to go towards research! Last but definitely not least, we realize that no matter how compassionate, accomplished, and/or generally fantastic our children’s doctors and therapists are, they are not (in most cases) parents or grandparents or siblings to these miracles. We hope to be friends to and offer support to other families dealing with hydrocephalus. We feel incredibly lucky to have found this organization and become a part of it!
Robbie Dunlop & Melissa Yeshnowski – Nebraska State Directors
During a routine ultrasound my daughter and her husband were told something was terribly wrong and to terminate the pregnancy. They decided not to abort and in turn were told to find another doctor. It is my sincere hope no other family would be treated this way. I want families who receive news like this to know there is someone they can talk to for guidance, support and comfort. I want them to know there is hope and that their child deserves a chance at life and to be loved by their family.
My grandson, Mitchell, was born on Valentine’s Day 2001, by a planned C-section, 6 weeks early. The doctors knew he had an encephalocele, a condition where the skull does not completely close and may contain brain tissue. Fortunately, his was a small opening and without any brain tissue. His biggest obstacle was the massive hydrocephalus.
Mitchell had a shunt surgically placed into a ventricle and as the fluid drained his brain was able to expand. He went home after only 2 weeks in the NICU! Mitchell will be 10 years old and is doing well. He has had two shunt revisions and takes seizure medication. He attends regular school and is a happy, loving child. He has been an inspiration and a blessing to our family.
My daughter, Melissa, and I are thankful for this opportunity to serve as Nebraska State Chapter Directors for PHF. It is our hope to enrich the lives of those affected by hydrocephalus and that one day there will be a cure for hydrocephalus.
Byron & Brandy Jackson – New York State Director, Central Region
On Columbus Day October 10th 2011 was just an ordinary day, at the time our 13 year old son Kashawn Stroman was volunteering his time to help kids at the Discovery center here in Binghamton, NY. We had no idea how this particular day was going to change the rest of our lives. Kashawn developed headaches off and on for the past year, which the pediatrician brushed off as migraines until this day when Kashawn complained he could not stay awake.
At the hospital there was one doctor concerned enough to do an MRI. I still remember how the doctors face was when he came and told us Kashawn had to be rushed to another hospital and see a neurosurgeon because his brain if filled with fluid. I had no idea it was Hydrocephalus, we have never even heard of it.
By the next morning Kashawn was having his first shunt put in. We were so terrified, upset, worried and really still had no idea why this was happening. They told us that Kashawn has a Tectal Plate Glioma that he has had since birth we had no idea about. And it grew just enough to block the flow of fluid, causing Hydrocephalus.
Since that Columbus Day 2011 Kashawn has gone through 2 shunt revisions and burr holes to drain excess blood. It has been a rocky road since 2011 but Kashawn is doing amazingly well, and things are getting back to a “new normal”.
This has opened our eyes to see what truly is important in life.
We joined the PHF because we want to be able to be there for families that are going through this and make sure they know they are not alone. We know how important it is to find a cure, we also feel that research and development of new ideas on Hydrocephalus, and the way it is managed needs to keep progressing.
Kevin Clement – New York State Director
In December of 1997, we were blessed to welcome a beautiful baby girl, Carli into the world. She was born a little bit early but all seemed normal. After about 4 months we started to notice some changes in her. She was not holding down formula the way you might expect a 4 month old to. Her grandmother and pediatrician noted her head seemed to be a little bigger than normal. Her pediatrician measured her head and noted it had grown quite a bit from the last visit. A quick visit to the hospital to get a sonogram through her soft spot revealed a problem. The ventricles in her brain were very large and pressing her brain against her skull. A visit back to our pediatrician and we learned Carli had Hydrocephalus.
Subsequent MRIs, visits to neurologists and neurosurgeons revealed Aquaductal Stenosis as the cause of her Hydrocephalus. We spent the weekend researching Hydrocephalus, its treatments and the Drs at Miami Children’s Hospital. The following week, nearing 5 months old, Carli had her first brain surgery to insert a Shunt. Over the years, Carli has had countless Hydrocephalus related surgeries but through her strength and determination, she leads a fairly normal life (if you can call any teenager’s life normal!). I have learned a great deal from Carli over the years and she never ceases to amaze me with the way she lives her life and her willingness to give back.
Over the past few years, Carli, her brother and I have become very active in the Hydrocephalus community. We have made a commitment to helping other families dealing with this incurable illness. By joining the PHF we hope to be able to help other families, help researchers develop better treatments, raise the awareness level and educate others about Hydrocephalus. And, most importantly, to one day help fund a cure!
With Carli, her little brother and the PHF by our side, we will make a difference!
Ms. Cessilye M. Lawson – North Carolina State Director
On April 26, 2007 my life changed forever, at only 27 1/2 weeks pregnant I delivered a 1 lb 6oz little fiery fighter (Taylor) due to a placenta abruption. As a healthy young woman in tip-top shape I never thought that I would have any complications with Taylor. Taylor remained in NICU in Little Rock, AR for the first 3months of his life; not without many ups & downs along with several close calls.
At four months of age at a Neurology appointment, I asked the Neurologist, “Didn’t he think my child’s head was rather large for his 4 lb body”? The Neurologist then stated, “Let me get my nurse in here to measure his head”. From that moment forth our lives would never be the same, Taylor’s head measure 53 centimeters and after a CT Scan it was determined that Taylor had Hydrocephalus and would undergo his first Neurosurgery and 1st VP Shunt Placement. Fast forward 5 years, Taylor is now a bubbly full of energy 5 year old boy that not only has excelled and overcame every diagnosis that stated that he would never walk, talk. or run and would be totally dependent on me for the rest of my life. Taylor not only has no Neurological delays but he runs, jumps, and is in martial arts with his older brother Thomas.
The last 5 years have been a roller coaster ride for Taylor, he has undergone 11 VP shunt revisions, 2 Endoscopic Fenestration Procedures, and currently has 3 functioning VP Shunts.
I decided to become a State Director not only to help those families and individuals cope with Hydrocephalus, but also to aid in finding a Cure for this Neurological Disorder. I want to help those in need through support groups, conversations, and by telling Taylor’s story. A cure has to be found for Hydrocephalus for all those little boys & girls that undergo these major surgeries on a routine basis. I have made this my life’s mission.
Ashley Pope – Ohio State Director
My pregnancy with my twins was difficult from the start. At just 16 weeks pregnant our doctors noticed that my daughter, Briahna, had enlarged ventricles. I was ordered by our doctor to get a fetal MRI and at 20 weeks pregnant I was told that Briahna had hydrocephalus caused by aqueductal stenosis. In that brief moment, our lives changed forever. Our first reaction was fear mainly because we knew nothing about hydrocephalus, simply because we had never heard the term. After that appointment I spent the next few weeks on the internet doing research, reading pamphlets and trying to connect with parents who had experience with this diagnosis.
At 25 weeks 6 days gestation, due to my water breaking, my twins were born. Just two days after their birth, Briahna was transferred to our local Children’s hospital. Just four days after her birth I was asked by a doctor if we would like to opt for palliative care for Briahna because her life may be a burden on ours. To us, Briahna was not a burden, she was a blessing from God and we wanted to fight for her. At ten days old, weighing less than 3 lbs. Briahna was taken back for her first surgery where her neurosurgeon placed a reservoir.
The next weeks and months to follow were difficult on our family. We spent a lot of time trying to get Briahna strong enough for her shunt placement. We were told she would need a tracheostomy. We were told she would need a Gtube. When Briahna was 4.5 months old her first shunt was placed. Two weeks later the shunt got infected and had to be removed. Three weeks after it was removed she had her second shunt placed. After 154 days, she was discharged from the NICU with her 2nd shunt and a NG tube. No tracheostomy. No Gtube.
I joined the PHF family to raise awareness about hydrocephalus in hopes that awareness will soon create a cure. There is not enough knowledge by doctors, funding from the government, and information for parents in regards to hydrocephalus. I want to be a part of changing that. I don’t want parents whose child has been diagnosed with hydrocephalus to be told their child will be a burden, I want them to be told their child will be fine. I believe PHF will be a large part in ensuring that will happen.
Amber Norman – Ohio State Director
Hey everyone, my name is Amber Norman. When I found out I was pregnant with my son, Landon, it was one of the happiest times in my life.
He was born 5 days past his due date and came into the world fighting.
On April 14th 2008, I was blessed with my beautiful son. Everything was fine until he was two months old. He was really sick and couldn’t eat. The nurse asked me if anyone had ever said anything to me about his “head size” and after that my world changed.
He was diagnosed with hydrocephalus that night and he had his first surgery after that. Since that day he has been so strong and I wanted to be strong for him. He has truly changed my life for the better and he blesses everyone that is blessed to know him.
He is the best big brother and his little sister idolizes him. Whenever he is in the hospital she will not leave his side. It makes me so happy to know they are so close.
When I saw PHF was looking for State Chapter Directors, I jumped at the chance.
My hope is that one day there will be a cure and until that day I will be fighting along side my strong little man.
I only hope I can touch as many lives and families that my hydro hero has touched with his story.
Jenna Sciulli – Pennsylvania State Director
I am a happily married mother of three children and a dog. Dante is the youngest of the three and had a seemingly uncomplicated birth followed by a (long-story-short) NICU stay for spiking fevers. All test results were negative he was sent home from the hospital.
When he was three months old, he was diagnosed with obstructive acquired hydrocephalus. His first brain surgery was to excise a posterior fossa cyst. He received a programmable VP shunt a few weeks later. He has had incredible teams of doctors, surgeons, therapists and early interventionists.
Today he still has physical therapy twice a week. He is, for the most part, developmentally appropriate. Dante is prepping to start preschool! He loves anything rough-and –tumble, muddy and most of all…he loves keeping up with his older brother and sister!
When Dante was first diagnosed with Hydrocephalus, it was hard to find support and educational resources that were positive. With a great deal of searching, once we found them, they made a world of difference to my family. I am excited to become Pennsylvania State Director so that I can help spread awareness, offer support and help “Fund a Cure” in my area and help others get some of the same positive experiences that we have encountered when searching for assistance.
Danielle Bacon – Rhode Island State Chapter Director
When I was born, my parents never would have thought that there was something wrong. I was a very happy baby and other than confusing day from night, I was very well behaved! Everything started to change when I was around the four month mark. According to my mom I became very lethargic and moody all the time. This was when my parents decided it was time for a check up with the doctor. When my pediatrician measured my head he was alarmed at the rapid growth. This was when I went to a Neurologist for the first time. After a CT scan he came to the conclusion that I had Hydrocephalus and I needed to go to Boston Children’s Hospital.
I got a VP shunt put in the top of my head, bandaged up, and sent home! Since this time I have had six more surgeries for my Hydrocephalus. On December 19, 2011 I also got some news informing me that I have an inopperable brain tumor near my brain stem. It is believed that this may actually be the cause for my Hydrocephalus.
I missed a lot of high school because of my condition. In my senior year I found myself fighting for the right to attend my winter ball. It would not have been a problem to not go, except for the fact that my Hydrocephalus was the reason why I did not go the year previous as well. Things got so crazy for me while I was fighting for this. When thoughts about giving in and giving up filled my head I remember thinking “Don’t do this for yourself. There are so many children and adults living with Hydrocephalus, do this for them.” So I did.
I ended up being able to go to my dance. It was at this time that I realized that I have a heart for advocacy. There are so many people living with Hydrocephalus, and so many who are diagnosed too late. My problem is that no one seems to know what it is. My goal is to change that. I want to be a voice for all the children in my state (and even worldwide if that ever be possible) to make change.
I want to be someone who parents can come to with ANY questions they may have, day or night. I know first hand what having Hydrocephalus is like, and I know it is not always a smooth journey. I do know that the fight is worth it. I also know that if there is enough awareness for this and if enough money is raised, a cure WILL be found. I am dedicating a huge part of my life to the PHF. This is something that I am passionate about and I have no plans to let my state down.
Amanda Pierce – South Carolina State Director
I am wife to Michael of 5 years and mom to 3 year old Tyler and our 1 year old daughter, Ava, who was born with congenital hydrocephalus.
Ava came into this world just two weeks after we found out about her condition, and she was beautiful! She was shunted at 4 days old and with many prayers has been surgery free since. She is now a year old, and while it has been a harder road than normal, she has been a true blessing! Ava has been the opposite of all the stories that I had come across when trying to search the internet. She is also exceeding all other expectations from local perinatologists and other doctors that had diagnosed her while she was in utero.
This made me stop and think; why had I not heard of such a common condition, and why did I feel such negativity and sadness when discussing this with doctors? It was then that I knew that God had given me a mission.
I joined with the amazing team of families of the Pediatric hydrocephalus Foundation in May 2010. It is my mission to provide support, bring awareness and raise money to help find a better solution for this incurable condition. Ava’s story is a positive story, and I want to be sure that many can find this and not always read the horror that is portrayed. While this condition is lifelong, it by no means should give anyone (including doctors) the idea to give up on a child. I joined with the PHF in order to be able to share the positive, help fund research for a cure, and also to provide hope and support to those who are experiencing the unknown as I have.
Madonna Logue – Southern NJ/Philadelphia State Director
My name is Madonna Logue Bove and my son Brody has hydrocephalus. My husband Keith and I welcomed our son into this world in July of 2010. I had an uncomplicated pregnancy and Brody seemed very healthy until he was about 18 months old. It started with flu like symptoms, but when Brody began having trouble walking and his eyes looked as if they were bulging, we went straight to the hospital. He was treated for dehydration, but when fluids weren’t perking him up we called a relative who worked at the hospital and had her take a look at him. This relative coincidentally has a daughter who has been living with hydrocephalus for 26 years. She examined him and immediately called Brody’s doctor and suggested a CT scan.
By the time Brody was diagnosed with hydrocephalus, his brain pressure was at a dangerous level and the nearest hospital with a pediatric neurosurgeon was almost 2 hours away. Helicopter was not an option and the doctors feared that he may not have survived the drive. By the grace of God, Brody’s doctor was able to find an adult neurosurgeon willing to perform surgery on him in Atlantic City; they had him there in 20 minutes. Brody then had his first surgery which was to insert an external catheter to relieve the pressure on his brain. After Brody was stable, they transported him to Philadelphia where he was shunted 2 days later. He has had one revision due to infection and one other related surgery since then. Brody is now almost 2 years old and is beginning to act like himself again.
When the members of our community learned that Brody had been diagnosed with hydrocephalus, there were an abundance of people who reached out to us, but hardly any of them knew what hydrocephalus was. There is an extreme lack of awareness and my goal is to increase knowledge and raise money to help fund a cure for this lifelong condition. Also, I hope to be able to provide support and hope to parents and families dealing with similar situations.
Randi Conley – Wet Virginia State Director
I found out I was pregnant in April 2006. I was lucky enough to have a 4D ultrasound when determining the sex of my baby. The ultrasound showed a 2 vessel umbilical cord that I thought would be the worst of my worries.
Hydrocephalus was suspected due to large head but never confirmed and I wasn’t knowledgeable about Hydrocephalus at the time. I had Samantha on December 15, 2006. The greatest moment of my life. The hospital assured me the suspicion of Hydrocephalus “disappeared”.
Later Samantha began to show what I now know to be Hydrocephalus. Her pediatrician treated her for acid reflux for 10 months until finally I had enough knowledge to investigate Hydrocephalus and refused to leave the pediatrician’s office until she got Samantha admitted to Ruby Memorial Hospital at WVU.
Samantha’s first sedated MRI…. then it began… Over the last few years Samantha has had 9 Hydrocephalus related surgeries. She has noncompliance in her ventricles and has a tendency to over-drain.
She is the light of my life and everyone’s life she touches. She is defying the odds and rocking through life. She is hilarious, smart, generous, and absolutely beautiful.
Samantha is my reason for raising awareness and I am blessed to be able to do so with the Pediatric Hydrocephalus Foundation. Hydrocephalus is so rare in our little world in West Virginia and I want to be a support as well as raise awareness and raise funds for a cure.
*Picture includes Me, Samantha, and her amazing Stepfather Patrick.
Gloria Frane – Wisconsin State Director
There is something to be said about having your newborns pediatrician refer you to a pediatric neurosurgeon, and to be told your precious new life has a condition called hydrocephalus. Our initial thought was surely this was a misdiagnosis as I cried in disbelief. This was, and is a journey that has changed our lives, one that is truly heart tugging. My daughter’s voyage has been very difficult and long.
My initial reaction knowing little or nothing about the medical condition was “what is hydrocephalus?” As I recall, I remember a cloud over us the entire first few weeks as my sweet Lauren was transferred to NICU. I asked God, why us, why Lauren, this is not fair.
Hearing, “we need to get your baby into surgery right away.” her head is “grossly enlarged,” to “I cannot promise you an optimal outcome,” my heart sunk. I could not even begin to speculate being told this, when less than five years prior, God blessed us with a miracle baby girl. She was born at 25.4 weeks, weighing just 1# 13 oz. Our little baby stayed in Level 3 NICU for 7 months before we could bring her home. We had severe medical issues starting with a Grade 3 brain bleed, insufficient lung development, open heart surgery when she was 3 days old and a list of problems I was not ready to deal with. Then, adding to the shock of being told my next baby had hydrocephalus; I felt that God had another journey in store for us and one that HE knew I could handle.
I tried desperately to remember what our incredible, skilled, passionate pediatric neurosurgeon had told me about hydrocephalus. In short it meant that our brain is made up of lobes and ventricles. The lobes make thoughts and our bodies work. The 4 ventricles are reservoirs of fluid. Cerebrospinal fluid (CSF) is moving all around the ventricles and the inside of our skull. This special fluid carries nutrients, and acts as a cushion to the brain. We have a set amount, and you make more when some is absorbed. The normal brain has a usual intracranial pressure of 0. It goes up for a second when you sneeze, then back down. I recall one of the peds neurosurgery residents trying to make me think of it in comparison to that of a tire. Too much pressure, it could burst or rupture. Too little pressure causes damage, too.
Hydrocephalus is a life threatening illness if untreated. My daughter had so much intracranial pressure that the surgery was critical. Here our journey began, and continues 80+ surgeries today. She has been the “owner” of the Cadillac’s of new shunts so many times, along with multiple infections, numerous revisions, cysts which have burst, not to say the least eye, heart and kidney problems that she has been dealth with. She is, and always has been a very difficult surgical case, so nothing is ever easy. The entire pediatric neurosurgery team and PICU becomes your home away from home often for months at a time because of complications.
Shunt technology hasn’t really changed since the 1950′s. Given the tendency of shunt blockages, it’s time to, (as Lauren’s neurosurgeon has said) “turn the page on shunts.” Since Lauren’s diagnosis of hydrocephalus at birth, I have been dedicated and working to raise awareness and resources to find a cure for this condition.
It is my passion in raising awareness, finding funds that go towards research to help find a cure for hydrocephalus so Lauren and many others won’t have to endure the pain of having a PICC line insert, or sticking a needle into her head to the shunt valve while she has to lie there so patiently and not move, or having to rush out the door without having the time to say goodbye to other siblings at home. The list goes on and on, along with tears, which break a parent’s heart. The recovery process for our children is often very difficult. It is a time of physical healing and emotional mending on the entire family. We have accepted to take each day as it comes and nothing more, for nothing is taken for granted.
Ever since Lauren was diagnosed with hydrocephalus, I have believed that God had a plan to use Lauren and my family on this journey to make a difference. I feel extremely privileged on becoming the state of Wisconsin Director. This opportunity has brought heart tugging feelings to surface, but now to a new level.
I welcome all to embark on this profound journey in finding a cure for hydrocephalus. So many people have asked me how they can help. The voyage has tested our faith to the maximum. It has taken me some time to finally accept that my daughter’s condition is not going away. We have no idea what the future holds, and until we find a cure for our “special warriors” we are all in this together.
Many have told me what an inspiration Lauren and I are to them, yet we have never felt this way. For us it has been very deep and personal journey, one where there are tears that just don’t stop and days and nights of worrying not knowing the outcome. But more importantly, it has been years of advocating for my child, educating and making our community aware of this condition, and lots of praying for a breakthrough and a cure. We have formed many special bonds with other children and families who have been affected like ours. We laugh, we cry, we comfort and hold onto to the new hope of finding a cure.