Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.

Tag Archives: Emmett


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September is Craniofacial Awareness/Acceptance Month and here’s why it should matter to you

Maybe it won’t be your baby. Maybe it will be your neighbor’s new baby, a cousin’s baby, the baby of the checkout girl at your local supermarket, or the baby of that nice couple at church. Rest assured it will be somebody’s baby because the statistics don’t lie. 1 in 2,500 babies will be born with Craniosynostosis. I know. I know. Craniosynostosis sounds like a really long, boring, and clinical word. I have to move quickly here now because I know once I start in with the medical jargon; many people tend to lose interest.

293121_3005087664604_1543276242_nHere’s what I want you to imagine: it’s your baby. If you don’t have a baby, then it’s a baby you love such as a niece, nephew, or a friend’s child. First they are going to push your baby, your very heart and soul, away from you in a hospital crib down a long white hallway. They are going to cut open your baby’s delicate, soft, sweet smelling head from ear to ear with a zigzag incision. They are going to peel your baby’s face off all the way down to their cheekbones. I’m going to pause here for a moment to let that sink in. Honestly. Your baby’s face. They are going to saw and cut into your baby’s skull so they can break it apart. They are going to remove pieces of your baby’s skull as if it were a jigsaw puzzle. They are going to take extra care around your baby’s brain that lies underneath. They are going to mold your baby’s bones into what they want them to be so that they may function and grow the way they are supposed to. They are going to put the pieces of your baby’s skull back together with an insane amount of screws and plates. They are going to put your baby’s face back on. Lastly, they are going to sew everything back together on your baby’s battered, bruised, and bleeding head. They are going to push your very heart and soul back towards you in a hospital crib down a long white hallway and into an ICU for days. You won’t be able to breathe the first time you look at your baby after surgery. It will be like a punch straight to the stomach leaving you gasping for air and void of all words.

IMAG0312Just days after my youngest son Emmett’s first birthday, he began having seizures and wildly convulsing at random times. In those long days and weeks of ambulance rides, emergency rooms, and multiple tests, no one could tell us what was wrong with our baby. A naturally impatient person, I could tell my son was suffering so I obsessively turned to Google for answers. I spent hours poring over websites, looking up words I didn’t understand, and reading things that went way above my knowledge base until I found it. I diagnosed my son with Craniosynostosis with Google’s help. A Pediatrician, a Family Doctor, a Neurologist, and 2 Emergency Room Doctors could not help us but Google could. I don’t think we had bad Doctors, just Doctors that had never heard of this birth defect through no fault of their own. Sadly, this is not an uncommon story. Even though this is a relatively common birth defect, there are scores of medical professionals that have never even heard of it. It took over 14 months for my son to be diagnosed with the birth defect that he had been born with.

IMAG0418My son was 15 months old when he had his first surgery. It took exactly 7 hours and 26 minutes. I ran while he was in surgery, suspended in a restless state of both drive and despair. I was just as broken as his skull that drained a sickening thick, red blood day and night. No matter how often I wiped up the pools of blood at the base of his neck, they kept reappearing. His eyes were swollen shut for 8 straight days. Sometimes when I close my eyes, I can still hear him screaming in terror and see him holding his head tightly in his blood stained hands. He’s had 5 surgeries so far in his short life, all related to Craniosynostosis but only 3 of them were on his head and skull. Some of the additional surgeries might have been avoided all together if he had only been diagnosed early enough. If only…

imgsvr.ashx2 While Craniosynostosis is only one diagnosis covered under the blanket for Craniofacial Awareness/Acceptance, it is the one I chose to focus on because it has impacted our lives so greatly. So what exactly is it? Craniosynostosis is a birth defect of the skull. It occurs when one of the sutures in a baby’s head closes too early and changes the way the skull begins to grow, thus inhibiting brain growth in the process. The only cure for Craniosynostosis is surgery, the optimal age for it being between 6 and 12 months. There is a less invasive surgery available in some cases, but many babies face this same very extensive surgery as their only hope. Symptoms of Craniosynostosis in an infant include an unusual shaped head, a hard, raised ridge along the affected suture, and a soft spot that closed too early. Craniosynostosis can inhibit brain growth and can cause intracranial pressure, seizures, eye problems, developmental delays, and more if left uncorrected.

945865_418390074926464_583492023_nAfter all of this, you may wonder why it should matter to you.  Here is where I must call out to you with a mother’s heartfelt plea. It has to matter. It just has to. It has to matter to our trained and trusted medical staff so that they can learn more about it, how to recognize it and how to treat it in a timely manner. It can’t go the way it went for us anymore. It has to matter to other families so that we can teach our children not to point and stare at someone that looks different, but to offer a warm and accepting smile. These kids have lived a life most adults can’t even comprehend; we needn’t make their lives harder with harsh words and exclusion. It has to matter to the other parents out there so that they could identify it in their child or another child if need be, in case they were to fall between the cracks as we did.

IMG_2174-2When all is said and done, all I can do is try to get the word out, to facilitate even the smallest of change with the hope that even a small drop in the ocean of awareness will be enough to make a difference for someone else. I leave that hope in your hands.


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Why on earth are you running 100 miles?

Here’s the thing – I never wanted to do anything like this, originally. I never planned on being the voice behind a cause. I had no drive or desire for anyone to ever think or say I was inspirational. In fact, despite the noble words that people have used for me, I have not ever felt inspirational in my life and I’m completely ok with that. I never needed my name to be known in local circles either. The only thing I wanted was for my son, Emmett, to be ok. I wanted to protect him more than anything in this entire world and I couldn’t. And so the only way I could survive that was to run. It was the only way I could be ok. That’s what started all of this.

Let’s rewind to 3 years ago: June 20, 2012. I was on the 10th floor of the children’s hospital running on a treadmill while a team of surgeons cut apart my 15 month old baby’s entire skull a few floors below me. My son Emmett was born with a birth defect of the skull called Craniosynostosis. Craniosynostosis causes the sutures in the skull to close prematurely so that the skull can not grow as it should, thus inhibiting brain growth. I vowed to run the entire time he was in surgery, no matter how long it took. I would not stop. I would not rest. I would not do anything but run until I knew he was going to be ok. I ran for exactly 7 hours and 26 minutes that day, calling it “Emmett’s Endurance Event” and raising awareness of Craniosynostosis in the process. It lit a fire under me. I had to do it again and so I ran for the 7 hours and 26 minutes on the anniversary of June 20th for the last two years. This year, I wanted to do something different. 945865_418390074926464_583492023_n

Emmett had gone undiagnosed for the first 14 months of his life. At birth, his pediatrician had told us he was just fine when we questioned his head shape. In the coming months, we would ask our Doctor about it as well and be reassured more than once that it was completely normal and nothing to worry about. After his first birthday, Emmett began having seizures. Two different times, at two different hospitals, the emergency room discharged us telling us that there was nothing wrong with our son after the seizures. We fell through the cracks unnoticed and so I took matters into my own hands. I knew something was wrong, call it mother’s intuition or God or a gut feeling. I knew. I turned obsessively to Google for answers, searching for hours and hours, multiple days in a row, going without working, eating, and barely sleeping. After many days of this manic behavior, I diagnosed my son myself. Because of the late diagnosis and severity of Emmett’s case, things didn’t go as planned after the first surgery. Emmett has other medical issues and there’s no way to know what could have been prevented if the Craniosynostosis was corrected sooner.

There wasn’t just one surgery. There have been five surgeries so far, three related to the Craniosynostosis. Multiple times, surgeons have sliced my child’s head open ear to ear. They have peeled his entire face back all the way down to his cheekbones more than once. They have completely cut apart the bones in his skull. They have put in numerous plates and surgical screws. They have filled in holes of missing skull and patched it back up. They have cut off excess bone that was healing incorrectly and growing in the wrong direction. They have drained pockets of fluid of and blood that wasn’t supposed to be there and looked for infection. I have seen my child’s eyes swell completely shut for 8 straight days after surgery. I have soaked up pools of blood at the base of my child’s head more times than I can count. I have watched as my child became traumatized: kicking, screaming, and crying, eyes wide with fear as the nurses approach him. I have pinned him down myself to help. I’ve spent hours trying to force him to swallow all of his medications. I’ve sent him off for tests and scans over and over. I’ve seen him unconscious and seizing on the floor in front of me. I’ve seen him cry tears of blood after surgery. I’ve rocked him in my arms crying right along with him, my heart broken and my shirt stained red. I’ve begged for relief. I’ve offered up myself to God as a sacrifice if only he would heal my son. I’ve fallen apart. I’ve shattered into a thousand pieces. But I’ve stood back up and faced it. I’ve refused to sink. And still the only way I could survive that was to run. Emmett hospital

That is why I will run for 100 miles starting on June 19 and finishing on June 20, 2015. It’s 100 miles for Emmett, to pay homage to all of his pain and suffering over the last 3 years. It’s 100 miles for myself, to acknowledge that I have survived and done the best I could. It’s 100 miles for all the families that have been affected by Craniosynostosis, to show them they are not alone. It’s 100 miles to raise awareness of Craniosynostosis, to tell the rest of the world what this is so that they can recognize it and maybe help another family some day.

Symptoms of Craniosynostosis in an infant include an unusual shaped head, a hard, raised ridge along the affected suture, and a soft spot that closed too early. If this could be your child or a child of someone you know, I encourage you to speak to your Doctor. Craniosynostosis inhibits brain growth and can cause intracranial pressure, seizures, eye problems, developmental delays, and more if left uncorrected.