These pictures and stories represent just a glimpse of the many children affected by Chiari. Within this page and in other pediatric pages are pictures of children of all ages. Some have recovered well from surgery, others are battling complications daily in many different stages. If you would like to share a Chiari Face and/or story, e-mail to email@example.com. Please state clearly that we have permission to post the picture to the Conquer Chiari Website.
My daughter Kyra was a normal 9 year old girl. She was a bubbly, happy kid that loved to play and do gymnastics. One day, she developed a "headache". This headache presented as extreme pressure in her head. Nothing could elevate it. We didn't know what was happening. Once the pressure started, it never stopped.
I began to get very worried and we decided to take her to the ER. We were completely written off. The did not do any imaging, and told me that we should see a neurologist for pediatric migraines. I fought, begged, and pleaded to get her into a neurologist that same week. We had an MRI, which is how we found out she had Chiari. The pressure in her head was from the compression on her spinal cord.
We saw a neurosurgeon and she was scheduled for surgery 17 days later. My daughter had to endure this pain for 35 days. Not a single break. Day after day I had to witness the strain Chiari out on her, knowing there was nothing I could do to stop it.
Thankfully after her surgery her pressure is gone and she is now feeling much better. There were a few complications , that were all resolved. Unfortunately, she still has health issues that we have to solve. As we have learned, Chiari isn't always "just" Chiari, sometimes it likes to bring friends to the party. She has been able to start getting her life back. I see smiles on her face, and she can run around and play again. This journey can feel so dark, but there is finally a light at the end of the tunnel.
I will forever be proud of my brave little girl. She never gave up. She fought through the pain. She is a Chiari Warrior.
Oliver was a perfectly healthy 10 month old baby. All of the sudden in May he started getting really fussy would crawl or cruise anymore. In June he started to get worse, crying all the time and when he wasn't crying he was sleeping for 30 min at a time 23 hours a day. When he was awake he would cry in my lap or just lay there. I took him to three different doctors. First said he's teething and some babies are just grumpy, second virus, third ear infection. He was 10 months and he couldn't eat food at all without puking or gagging. He could no longer nurse without gagging. He finished his antibiotic for the ear infection and he was still so wobbly and just sick. I was like screw it there is something wrong, so I took him to the emergency room. The first emergency room said they were very concerned with his symptoms and his breathing (because it had been slow). They sent us via ambulance to UK pediatric hospital. There they did an EEG and found nothing. Then finally after 4 days there they sedated him for his MRI and spinal tap. After that they came in the recovery room and told us he had Chiari but it wasn't what was causing his symptoms. But they were sending us to the PICU because his breathing was only getting worse. We get to the PICU 20 minutes later. The doctor there said he didn't understand why we were there and he was going to send us back down to the floor. 10min later they were putting him on a ventilator because the spinal tap had caused problems with the Chiari. The immediately sent us to Cincinnati Children's Hospital via helicopter. He stayed on life support for 3 days when the finally weened him off. His official diagnosis was: Complex Chiari Malformation, hydrocephalus, and basilar invagination. July 2nd Dr. Vadivelu did his decompression surgery. It went great and we got to go home 4 days later after 2 weeks in the hospital. He is so much happier and smiling all the time now. AND LOVES food now. He will continue with speech and physical therapy. He will be in his neck brace for a year (till he is 2) and have another surgery for the basilar invagination. But for now, he is happier.
My son Wade was born October 16, 2000, weighing in at 7lbs. He was discharged from the hospital, seemingly as a healthy boy. However, as time passed it became quickly apparent that there was something very wrong. Wade would cry constantly in pain, and wasn’t growing. I took Wade to the pediatrician, and he brushed it off as teething. I gave him the prescribed pain medications, but this still didn’t explain why he wasn’t growing. The pediatrician ordered blood tests, which all came back clear.
By the age of 2, Wade was still incapable of walking, talking, feeding himself or able to swallow properly, and was still significantly undersized. I went back to the pediatrician and he again suggested that Wade was just intellectually delayed.
When Early intervention and a team of psychologists, speech therapists, and occupational therapists were investigating my younger daughter, I begged them to help me with Wades case. They attributed Wade’s lack of speech, walking, toilet training, and eating to the fact that he is the youngest child of 6 other siblings and we did everything for him and he needed to do it for himself. I found this upsetting to say the least as we did not do everything for him, considering his older sister, Frances, has downs syndrome.
Wade's doctors decided that he was just intellectually delayed and I was a paranoid mother, with an exception to the psychologist who came forward, believing there was a lot more to it. He contacted the pediatrician and asked him to write a referral for an MRI. The next day I saw the pediatrician, he was reluctant and did not want to give Wade an MRI, stating it would prove nothing and wouldn’t be any good for his health. Upset, angry, and confused, I asked if it were his own son, presenting the same delays, and such a significantly small structure would you then give him an MRI? He finally gave in, once again stating, “It won’t show anything.”
After, four hours in the MRI, he finally came out. There was no word from doctors or nurses. He was just released. 2 months passed. When the GP called me into his office, he looked at me with sympathy. He looked as if he knew something that I didn’t, I suddenly became very nervous. He told me that Wade required brain surgery urgently, and explained just how sick my little boy was, with Arnold Chiari Malformation 1 and two syrinxes. I asked him to write everything down. I couldn’t concentrate to comprehend what he was telling me. I was in shock. I went home in denial, convincing myself that they got the MRI’s mixed up. This can not be my little boy. The next morning I called the pediatrician, explaining everything that my GP had explained to me. I was told that his condition was “No big deal” and his surgery wasn’t urgent at all.
I then received a call from the Royal Childrens Hospital, and they wanted to see Wade urgently. They explained to me that he had a syrinx in his c section and one in his t section and they had to remove part of the bone at the back of his head. At this point Wade was 5 years old, and still not talking. I was told by his surgeon that his condition was “Rare and fascinating, and can be fixed”.
Wade had his surgery in January 2005. For me to hand my son over for brain surgery was something I can’t explain. Something inside me died. 5 days later he was discharged. The next day, I noticed his head was swollen, and there was clear fluid leaking from his head. I took him to the pediatrician, scared and desperate. As a mother, I knew this was not right. He told me to “Go home and have a cup of tea” that I worry too much. I put Wade in the car and took him to the Royal Children’s Hospital myself on a two-hour drive, him in the back seat vomiting. Once I finally got him admitted they taped the back of his head. His head was leaking brain fluid (CSF). He then started slipping in and out of consciousness, until he went into a coma. He was put into ICU, and operated on the next day to repair his dura leak. 4 days later, he was discharged.
When Wade was 6 or 7 he was able to talk slurred, and unclear words. He was always reporting headaches, migraines, dizziness, numbness in his hands and legs, vertigo, neck pain, and to this day, the doctors are still denying that these symptoms are not in any way related to Chiari when I know for a fact they are. They say there is something else wrong with my boy, but don’t seem to be looking for what it is. Only looking for medications to cover up the symptoms. We’ve trialed a lot of medications, and still can’t find any that do him a lot of good.
Also at the age of 6 or 7, Wade attended a mainstream school, he could only do two hours a day. The noise and light was too much for him to handle, he was in too much pain. Two years later, we put him in a special school. To this day, he still attends a special school, with a very low attendance as he if very often to unwell. And 80% of the time he is at school, I have to pick him up early because he can’t take anymore.
We are fighting today for doctors to listen to us, to help us, and to believe us. I, as his mother, feel so helpless. In Australia we don’t have any Chiari or Syringomyelia specialists as there is in America and other parts of the world. I’d love for Wade to have access to these brilliant people but it is impossible for him to travel. We need help. For someone to stand up for us and say that these symptoms he suffers are related to Chiari.
Note from author: During walk planning for the 2013 Conquer Chiari Walk Across America, I was introduced to Ian Autry. I had no idea that this was the father of the little boy I had read about the previous year when a head injury took his life. It was unknown before his accident that he had Chiari Malformation. It had touched my heart so deeply, even more so, the journey towards awareness and the way they keep Bryce's memory alive every single day. Losing a brother in my teens, I understand the trial and tribulations this family has endured, it takes a toll personally, physically and emotionally. This special "Faces of Chiari" is dedicated to Bryce and the unwavering love and dedication of his family. ~Melissa Neff~
On March 30th, 2012 the family of 6 year old, Bryce Autry said goodbye to him, days after he had fallen off his wagon and was unresponsive to what was first thought as a head injury. An MRI would later clarify that he had Chiari Malformation. During this devastating time they made the very difficult choice of donating his organs. This unselfish act, in turn helped 6 people from the ages of 17 months to 49 years old. In September, a nervous and emotional, Ian Autry was asked to speak at LifeCenter Northwest's Donation Celebration, where he also wrote letters to the recipients of Bryce's organs and corneas.
In September, 2013, a month before Bryce's 8th birthday, Bryce's parents Ian and Aria, and his five older siblings hosted the Conquer Chiari Walk Across America in Bozeman, Montana to bring awareness of Chiari Malformation to the community. Thanks to his oldest sibling Brittany, a budding photographer, they had many pictures of Bryce who is described as being "happy go lucky" and thankfully, quite the little ham.
December 20th, 2013, a year and half after saying goodbye to Bryce, they had the chance of meeting one of his recipients. "We were really excited that this day came," said his mom. "We were counting down... Oh my gosh we're actually going to get to meet her." Twenty-one-year-old Emelia Mijangos, received one of Bryce's corneas, after growing up with a degenerative eye condition that kept her from driving and going to college. After a tearful meeting, Mijangos quickly expressed her gratitude. " I already feel like you guys are my family," she said. The Autrys said it was surreal to look at her and know part of their son was looking back.
In January 2014, Bryce's 'florograph,' a depiction of Bryce, was part of the "Donate Life" float in the Rose Parade, dawning his now widely used picture of his "Superman" costume, a fitting picture for a little guy that gave 6 others a chance at life, a true superhero!
Our best wishes go out to the Autry family as they continue to heal and keep Bryce's memory alive in those they inspire to learn more about Bryce and Chiari Malformation.
Sara has always been my one child that is known to be a klutz, so when she would fall down running due to losing her balance I would think nothing of it. When she complained of slight back pain, I again did not think much of it as she is always running around doing flips. It’s normal, she is a kid, she is having fun. That all changed in March 2013, when we went to the doctor for her normal check up at the age of 9.
Her doctor noticed a slight curve in her spine and sent us for X-rays. Her doctor even reassured as that it looks really slight and most likely will just have to be monitored as she grows. Two hours later we were being set up for an appointment with a Pediatric Orthopedic. Due to her severe case of Scoliosis they sent us for a MRI, as her Orthopedic stated it is not normal for a child her age to have this without something else going on. A week after her MRI, we get the call that she has a Chiari Malformation and was set up to have an appointment with the Neurosurgeon. Not only does she have Chiari and scoliosis she also has syringomyelia with about six syrinx's along her spine. The Chiari is also restricting her CSF flow. Sara was scheduled to have surgery on July 31st.
She was such a champ the day of surgery. All smiles going into the prep room and talking with both the nurses and the doctors. Sara never lost her smile at all. She was even reassuring me saying “mom it will be fine”. The doctor came out after surgery and let us know that everything went well and that soon I could go back and see her in recovery. I honestly will say seeing her in recovery was very hard. Not being able to help your child and see all the machines monitor everything, and IV’s in her small arms, it was a trial. I was so glad and thankful when she first opened her eyes and said “Hi mom is it already done”.
Her recovery went amazingly well. Again all smiles the whole time. All the doctors and nurses were amazed that this little girl never once complained of pain, and was always so courteous saying thank you for everything. She was healing so well that after 24 hours she was taking nothing for pain. She was released from the Hospital on Aug 2nd.
She missed her first couple weeks of school which was the hardest for her. In the past 3 years she has only missed five days of school and that was only due to Robotic competitions. Once she got back to school everyone was wondering how she was doing and were checking out her scar (we call battle wound) as it was clearly visible due to her going to a pixie haircut. Sara being the amazing girl she was explained to everyone what happened and why she had surgery. I received tons of complements on her strength, knowledge, and willingness to help others understand.
As of today, when you look at Sara you could not tell that this year has been a trail for her, you cannot tell that months ago she was in so much pain that sometimes she was curled up in tears, today all you see is this amazing young lady speaking up and giving Chiari a voice. Since surgery she has signed with a modeling agency, getting ready to do a local commercial this winter, being Captain of her Robotics teams, and working on spreading the word about Chiari and is just an amazing daughter.
The first picture is her winning Queen in her division, most beautiful eyes, most photogenic, three weeks after surgery. The second picture was taken after they moved her to PICU.
I want to share my baby girls picture and story. Abbie Layne was the happiest baby. She had already had a year of medical nightmares. She was born with a heart defect which she thankfully outgrew.
At her 6 month checkup the doctor noticed her face drooped on the left side and it was then that she was diagnosed with the birth defect torticolis which means the neck muscles were too short on the one side of her neck. She was sent to childrens hospital because she had developed brachycephaly which means her head wasn't growing right. She needed an infant helmet according to the first orthopaedic doctor we saw. Childrens hospital said that with intense physical therapy on her neck her head should straighten out. It did.
Her next problem was her legs. We ended up back at Childrens because we were told her legs were twisted and she was going to need braces. The specialist said she might not walk until she was 18 months but that she wouldn't do braces until she was 2. My little girl started walking at 10 months. She was unsteady but her legs weren't perfect. A few weeks before she turned 1 we were at a wedding and she was running all over. That next Monday she started falling. She was at daycare and she would stand up then fall. She couldn't walk without using the furniture for help. I took her to the doctors and the doctor she saw said it was a viral infection. The next day Abbie couldn't sit without falling over. I took her back in and she saw her regular pediatrician. She did blood work again and said her white count was a little high but that she thought it was something more. She said Abbie was not acting like Abbie.
She ordered an MRI and on the 28th of September, two days before her 1st birthday we had the MRI. We got the news she had Chiari malformation the next week. The 8th of October I met with the neurosurgeon and he said she needed surgery. I convinced them to wait until after Halloween since I had a 2 year old also and wanted them to have one more fun thing before surgery. November 1st Abbie had decompression surgery. She did great! She tried pulling out the ivs while in recovery! She developed a fever while in the PICU but that turned out to be an ear infection. She was released after being in the hospital for 5 days. She just went back yesterday because she was leaking out her incision but it was just drainage because she ripped open part of her stitches. She is back to being her normal active self just a week after major surgery! I know there are others that have more problems and some have less but for a 1 year old I'm proud of my baby!
Cian & Kaelan are siblings who were diagnosed a month and two days apart with Chiari I Malformation. Their cerebellum tonsils are herniated 16mm & 10mm respectively.
On June 24th and September 17th, 2011, Dr. Jorge Lazareff, at UCLA led his team to decompress both children. They are doing remarkably.
My name is Celena, I am 14 years old and was diagnosed with Chiari Malformation and Syringomyelia in March 2012.
I will be having another MRI to see if there have been any changes and to decide whether I will need surgery, I think that I will, I have vertigo 24/7. I been thinking about rasing money to find a cure for this rare and bad disorder, but I really dont know how and I dont think I can do the walk yet, maybe in the future.
I want to make my own website and try to give information and explain my story with it, and what it is really is and how people/kids have to deal with it.. I do videos on youtube but i feel like thats not enough..I would like it if you share my youtube channels, I will be telling my journey there.
Rihann was diagnosed with Arnold Chiari Malformation Type 1 at age 15 months.
Her first surgery was in March 2010 at age 17 months and second surgery was in Dec 2010.
Rihann started having trouble with passing out and seizures at 11 months. It took 4 months and a MRI too diagnose her. After her diagnosis, and meeting with neurosurgeon, her first surgery was 30 days later.
She did great for a month and then everything started over again. So in december 2010 was her second surgery. With multiple MRI, sleep study, and removal of tonsils and adnoids, and more MRI she is now diagnosed with a Syrinx at her C2.
Rihann is facing another surgery the summer of 2012. Please continue to pray for these children and help FIND AND SUPPORT THE CURE!!!!
Excerpted from the personal struggles sent to us from Chiari patient Kimberly VanBaak and her 3 children.
January 4, 2012 was the day Chiari would be brought into our lives, the day of our son’s first MRI. Little did we know, that this was the start of a long journey to discovering four members of our family have been living with Chiari Malformation.
Parker age 5, Gracie Claire age 6, Zoey age 7 and I (mom) ALL have Chiari.
All three of our children have been constantly plagued with sickness: stomach flu that lasts longer than most, ear infections, bronchitis, pneumonia, croup, allergies, asthma, hives, sinus infections, reflux, tummy aches, dizziness, hypotonia, delayed milestones, clumsiness, frequent falls, numbness, crawling feeling on legs, leg pain, migraines, multiple doctors/specialist appointments and frequent hospital stays due to this medical condition.
Parker was diagnosed with a 16mm Chiari Malformation. A wave of fear tugged at my heart and I kept asking “a what...what does he have?” I quickly scrambled down this unheard of and bizarre word the woman on the phone kept repeating. They put me through to the neurosurgeon’s office & the appointment was set for a few days later. I was filled with concern and fear of the unknown new diagnosis which brought about days and nights of researching this serious neurological condition.
After the initial consultation, the neurosurgeon requested another MRI of his spine to determine if Parker had a syrinx, thankfully, he did not. Chiari decompression surgery was set for two weeks later. Surgery was seven hours long. He had an allergic reaction to morphine and threw up for two days until I finally pushed to give him something else for pain. His recovery was long. By the end of April we saw a new boy and significant results.
Zoey was diagnosed with a 5mm Chiari Malformation, just months after her brother’s decompression surgery. The neurosurgeon dismissed the Chiari as the culprit of her leg pain that was intensifying every day. Her leg pain seemed to increase as she progressed throughout the day. By mid day, she would set herself up in the family room with all of her things around her so she did not have to get up and walk about. It was extremely hard to sit by and watch your baby in pain day in and day out.
We attended the Conquer Chiari walk. Dr. Gilmer gave a speech that moved me. I knew that our children needed to be seen by her. I tried to make an appointment after the walk but it was an insurance debacle. I did not give up though as I knew if there is a will there is a way! Dr. Gilmer’s coordinator attended one of our local Chiari Support Groups in March to offer information on Chiari and the NEW Chiari Clinic. I asked many questions about my childrens symptoms. I decided to private message the coordinator hoping she would forward my children’s symptoms onto Dr. Gilmer.
Parker & Zoey met Dr. Gilmer within seven days of the message. She found that Zoey had a 9mm herniation, not a 5mm herniation per former evaluation, very little if any cerebral fluid flow and that she presents as if she has a brain tumor, as well as scoliosis due to Chiari being untreated for so long. She also confirmed that Parker did not have adequate cerebral fluid flow, due to scar tissue from his first surgery, and that his right bone appears to have grown back from his decompression done just one year ago. Both, children were scheduled for surgery April 5, 2013. The appointment was bitter sweet..
My daughter’s name is Brooke, she is 4 years old and was diagnosed with Chiari Malformation at 2 years old. She does not suffer from head aches but has very low muscle tone, swallowing problems and pain in her legs. She had vomited the first 13 months of her life, that is why we did the MRI in the first place. She was also diagnosed with Septo Optic Dysplasia which led to hypo pituitarism: resulting in a growth hormone injection every night and diabetes insipidus. We have been strongly urged recently, for Brooke to have a decompression due to numbness in her arms, incontinence and the degree of her Chiari. Brooke battles pain from Chiari everyday but she does it with a smile! She is extremely smart and happy. Right now we are searching for the right pediatric surgeon and hospital.
Hi my name is Kimberly. If you can ask anyone about me, they use to say a girl who loved to have fun, joke around, be a normal average girl. Today, people say a girl who is fighting for her life to live.
Growing up nothing never ever worried me. I never worried what tomorrow is going to bring, I did not have to worry. In December of 2008, all my dreams I once strived for, suddenly got taken from me. I got into a car accident, a very severe one, which I thought I would not make it through. I did make it through though. I was only 12 years old. I was still a little girl. I was in 6th grade.
After that day everything went downhill. I started to get these very bad headaches; I would get dizzy, lightheaded, in so much pain that I just want to pass out. My parents and I finally approached the doctor, to see what is going on. I was diagnosed with Arnold Chiari Malformation Type 1. I was still only 12 and I knew my childhood, and fun and games were now over. I had to mature and take this serious now.
I am 16 years old now and currently in 10th grade. I am still the exact same, even worse. I wake up with fears, and worry if I will even make it through the day. I went from being a normal girl, to not normal. I have to live my life different then and still have to even to this day. I had to mature and know this is a serious matter. I did not ask for this happen to me. I do not wish this brain injury on no one. Not even the devil himself. I had to give up everything I love to do softball, bike riding, parties, sleep overs, band, etc. The list is more than 100 things.
The only thing I can do is advocate for other girls and boys that are going through this. To tell them there is still hope for all of us. There are days I just want to give up. Even days when I go to bed in pain, and I wish I wont wake up. But im a fighter, we are all fighters I cannot let this injury take control of me, and my life. I still am in pain every single day. I do a great job of hiding of it, but other days I am not good at hiding it.
I did not get the surgery yet, but in soon time, I will be. Then just maybe, just maybe I will remember what normal feels like, because if someone ask me how does normal feel, I do not remember and cannot answer. It been 4 years of my life taken away from me, I cannot relive those 4 years ever again. But each and every day I shall take the pain, the tears, and the suffering with me, and I will fight this till the day I die. And when darkness shadows over me, I shall find the light through and show the world I am Kimberly and I’m fighting my life to stay alive each and every day. There is hope. There are miracles. I will get mine.
"It has been three years since surgery; I am swimming every day for three hours or more, attend one of the most vigorous private schools in the USA and enjoying life. I am able to place second in the region for my one hundred butterfly, attend school every day and help my family with chores and cooking. A dream of living without pain, three years ago, was untouchable. Now that dream has shifted to helping others live without pain and raising awareness. So yes this is not your sad story of how I never got better, this is your joyful, hope raising, story of how one girl is living close to pain free and happy."
Nehemiah is a 7 year old that is battling with 2 rare brain disorders.
When Nehemiah was 10 months old, he had his first seizure, his parents were told that it was only a febrile seizure and not to worry about it! After several more seizures they were referred to a pediatric neurologist. They performed an EEG on him at the age of 2 and it showed nothing. They were told that sometimes you have to catch the seizure in the act and were instructed to bring him in with the next seizure!
Nehemiah had a MRI in October 2010, the results showed he had Chiari Malformation, something his parents had never heard of. They were told by his nurse that it was 'nothing to worry about'.
After two years his parents were not happy with how Nehemiah was being cared for, they wanted answers. They took him for a second opinion in April 2012.
At Cincinnati Children's Hospital they learned that Nehemiah had another rare brain disorder called Hemiplegic Migraines. It is so rare that Nehemiah is Cincinnati Children’s first patient with this disorder! The neurologist informed them that the Chiari Malformation should have been watched by performing an MRI every 3 months and that it IS something to worry about!
He is a 7 year old little boy and loves sports, but was told that he can no longer play them. The neurologist has placed him on major restrictions. He cannot play any sports, ride roller coasters, jump on a trampoline, tumble, jump off diving boards, even a car ride could turn life threatening if he were to be involved in an accident. The only way that he will be able to live a normal life again is to have Decompression surgery, which requires removing 2 bones from the skull and tack the cerebellum up back in its place!
The next episode of the hemiplegic migraine that Nehemiah has, he will need to be rushed straight to Cincinnati Children’s Hospital for blood work and MRI to see what is going inside during these episodes. When he has an episode, it leaves him paralyzed on his left side anywhere from 2 – 4 days, very sick, and sleepy! He sees the neurosurgeon and neurologist every 6 months along with an MRI for each visit.
Nicholas is a 7 year old boy from Clarks Summit, Pa. He was diagnosed at 10 months old with Chiari Malformation type 2. In October of 2008, Nicholas had a spinal fusion and was decompressed. After he developed hydrocephalus. He has had several shunt surgeries. Nicholas has absent seizures. Nicholas has 45 degree angle (in xray) of scoliosis. Some of his battles consists of: headaches, insomnia, choking, severe leg pain, vomiting, and neck pain.
Our goal with creating a Facebook page is to get awareness. Nicholas is a HUGE wrestling fan. The wrestling world has given Nic tons of love back. In order to get Chiari noticed, I am gearing up a huge campaign to get John Cena in purple for September 2013.
For cards or well wishes:
P.O. Box 827
Clarks Summit, Pa 18411
Caleb was born February 25th, 2007 at DeWitt Army Hospital at Ft. Belvoir, VA. He was extremely jaundice and stayed in the hospital for 7 days getting phototherapy. Caleb was a great baby and hit all of his milestones...until he tried to speak. He had a very hard time communicating and would throw terrible fits quite often.
He started speech therapy at 18 months old and is in speech and occupational therapy currently. He also has always had GI issues. He has been hospitalized for terrible bowel impactions and it has been quite traumatic for him.
Caleb has had many evaluations over the years, and started pre-school at three because he was labeled "developmentally delayed" even though no one could really understand what Caleb had going on.
No one could "put their finger on" a diagnosis that fit him. That has since changed because it is evident that Caleb's health issues are impacting his learning.
In August 2012 my husband and I noticed Caleb having more and more "staring spells" than usual (he had always done this but we thought it was day-dreaming) and we wanted to get him checked. His pediatrician wanted to make sure he was evaluated just in case. We were referred to a neurologist at East Carolina University in Greenville, NC. She thought what he was having what is called "Absence seizures". She ordered a MRI and a 24hour EEG to check his seizure activity. Both came out normal...except one finding.
They found that Caleb has something called a Chiari I Malformation. His neurologist decided to keep him on his anti-seizure medicine and take a "wait and see" approach since he wasn't having too many symptoms that were affecting him from day to day. We were very concerned.
On January 5th 2011, Caleb had his first tonic-clonic seizure. He had another one less than a week later. Later we discovered many Chiarians have Epilepsy, GI Issues, and speech/language delays.
In late September, 2012 he had a cine-MRI and they found restricted CSF flow. We were then referred to a neurosurgeon at Duke. In December, 2012 Caleb had his third MRI to check on his Chiari since he has been having more symptoms. We found that it had doubled in size, restricted CSF flow, and Hydromyelia. He has since started presenting with headaches so bad that cause temporary blindness and extreme light sensitivity, and leg pain. He is on another medicine to help with his headaches, but they still come and sometimes even keep him from his kindergarten class.
Caleb will have another MRI in April to see if he should go ahead and have the decompression surgery. It has been a long hard road for Caleb and he is still so young. I know there are many families that are going down that same road, and if I can help or support even one of them with Caleb's story I will feel blessed.
Connor Patrick came into the world on April 6, 2010 at Camp Lejeune Naval Hospital in North Carolina. I did not get to hold him right away because he there were some points during birth that they thought he may not have had oxygen. He did not even cry right away, but once he did, oh boy could you hear him. The first thing I noticed was his hair. It was so white. He looked like a little angel. He looked up at me and gave me a half smirk and went right to sleep. I now think that smirk was my warning that this little guy was going to be my greatest challenge in life.
Connor was always an unhappy baby. I felt something was wrong from the very beginning but kept being told it was nothing. Even when he started having tantrums with breath holding spells.
In May 2012, Connor had thrown a tantrum as usual, but this time he started to have a seizure. He went limp and lifeless and completely pale afterwards. I thought he was dead. I was told in the ER that it was a fluke and it would not happen again, but not even 24 hours later he had another. After fighting with his doctor who still thought there was nothing wrong, we were sent to a wonderful neurologist who after an MRI diagnosed Connor with Chiari. I had never heard of it before and neither had his family doctor.
His neurologist sent us to a pediatric neurosurgeon at Duke who is doing another MRI to decide if Connor needs to go ahead and have the decompression surgery. Every day with Connor is a challenge, but this boy is so worth it. My goal is to raise awareness about Chiari, and Connor’s goal is to be Batman.