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One little boy’s ultra marathon

Posted May 29 2012 12:00am

Do you like running on treadmill?

Neither does Kathy Sebright. In fact, she despises it. Ask her about the treadmill and she’ll tell you in no uncertain terms, “I only run on it when there are no other options for getting outside. I run outside year round. Snow, ice, wind, rain, heat, blazing humidity - you name it, I'm there.” But in less than a month she’s going to be running on one…for possibly eight hours straight. Let that sink in for a minute. She’ll be running AN EIGHT HOUR TREADMILL RUN or however long it takes her 15 month old son to emerge safely from an invasive surgery in which the bones of his skull will literally be broken and put back together because of medical condition called Craniosynostosis. Never heard of Craniosynostosis? Neither did I. Nor did Kathy. In fact, she’s not entirely sure her son’s doctors did either which is EXACTLY the reason why she’ll be running – to raise for a cause that hit home.  This is Kathy’s story, and that of her precious son, Emmett, in her own words…

Craniosynostosis is a birth defect in which one of the sutures in the skull closes too early, before the baby’s brain is fully formed. This can inhibit brain growth and cause severe and permanent damage. Signs to look for are a misshapen head (not to be confused with plagiocephaly – flat head syndrome), a hard, raised ridge along the affected suture, a soft spot that closed too early, or a slow growing head. The earlier Craniosynostosis is caught – the better! A less invasive surgery is sometimes an option if the child is under 6 months. Otherwise, 6-12 months is the optimal age for cranial vault reconstruction.

emmett Emmett is our second child, he is 14 months old. We also have a 3 year old son, Travis. Emmett is such a happy, smiley baby with a huge personality. He has beautiful, big, blue eyes that just light up the room. He adores his big brother and laughs uncontrollably with infectious baby giggles anytime my 3 year old does something silly. He’s a stubborn, strong willed baby, but that has served him well as he’s become an excellent fighter. He came into our lives shortly after I had lost 2 babies consecutively during pregnancy. The doctors who thought I would lose him as well, told me to “prepare myself”, and put me on bed rest for 8 weeks during the 1st trimester.

But just as quickly as the problem had surfaced, it went away and I was taken off bed rest with a very normal, uncomplicated, remainder of my pregnancy! He is our little miracle baby. He is developmentally delayed in a few areas. We have yet to hear him say mama or dada, or even associate us with those words, but I know he’s a smart baby and will catch up soon. He also doesn’t walk yet either, but we keep patiently waiting until we can fill out that milestones page in his baby book.

We noticed right away when Emmett was born that he had a different shaped head, but the doctors kept telling us it was nothing to worry about and it would ”pop back out” eventually. He has a prominent ridge running from the top of his head down to his nose, his temples are pinched in (indented), and he has a triangular shaped head. But other than his oddly shaped noggin, he was a perfectly healthy baby for the first entire year of his life.

And then everything happened at once. He had his first grand mal seizure a week after his first birthday, then a partial seizure, and later another grand mal seizure. A CT scan revealed the metopic suture in his skull had closed early and we were told it was nothing at all to worry about. This time, I didn’t believe them when they said not to worry. I did my own research, looked at other CT scans online, made my own diagnosis of metopic Craniosynostosis (trigoncephaly), and demanded a referral to see a specialist. I knew what my son had before any of his doctors. We struggled to get the doctors to take us seriously, to get the referral we needed, and for them to believe me. They didn’t even want to schedule surgery for another 6 months and told us “he should be fine” until then.

We ended up switching hospitals/doctors because we felt we were not getting quality care. At the second hospital with a different set of doctors, our son was immediately diagnosed with severe metopic Craniosynostosis. When they gave us the diagnosis, in front of an entire team of doctors and surgeons, I started sobbing. The doctor stopped talking about the surgery, handed me a tissue, and reassuringly patted my hand. At which point I cracked a smile and then started giggling, realizing they thought I was distressed about what they had just told me and about to crack. I managed to blurt out, “I’m relieved, I was right” and the doctors started laughing with me. They told me I was the first parent they’ve ever seen cry tears of relief at this diagnosis and then laugh. I was just so unbelievably relieved that this group of doctors agreed with me, saw the urgency in the situation as we did, and were going to do something about it as soon as possible.

We then took on our insurance company who did not want to pay a penny for us to use this out of network hospital. They wanted us to go back to the first hospital that didn’t take us seriously and didn’t even seem concerned with our son’s condition. We fought relentlessly with them, for weeks, and were just about to contact the local news station to help us put public pressure on them, when they caved.

During the pre-operative testing, we found out a few things. The seizures were not related to the Craniosynostosis, but without a doubt, a Godsend because we would have never known about the Craniosynostosis without the seizures coming first! We will investigate the seizures further after the surgery, as the surgery is the highest priority right now. An MRI also revealed a venous abnormality in his brain – which is something abnormal with a vein in his brain. Again, it’s unrelated to the Craniosynostosis, but something else we never would have known to look for if he didn’t have Craniosynostosis first! Another Godsend. He will need to have it monitored regularly in case it starts to restrict blood flow or rupture, but for now, it’s not causing any problems.

The surgery he will need to correct the Craniosynostosis is a cranial vault reconstruction. It is a 7-8 hour surgery where they will make a zig-zag incision ear to ear. They will break the bones of his skull, reshape them, and put them back together with plates and screws. Since Emmett also suffers from unexplained seizures, there is a bit of a complication. If he seizes on the OR table, it could be fatal. He will be put on anti-convulsant medication for the surgery but nothing can be guaranteed as we don’t know the origin of the seizures. If all goes with the surgery, we will spend 2-3 days in the PICU (pediatric intensive care unit) and 3-4 days in the hospital. Because of the nature of the surgery, there is a lot of facial swelling which causes the eyes to swell shut. Before we can be released from the hospital, he will need to be able to open at least one eye. From what we understand, he should bounce back fairly quickly, in a couple of weeks; he should be acting like his old self! Sometimes additional surgeries are needed because the skull can revert back to its original shape. It’s something we will have to watch.

As for the stress, all I can say is that we are very fortunate. We have a solid faith to lean on that has helped us navigate this with more ease than I thought possible. We have a huge support system with family, friends, coworkers, and our church congregation. I have retold Emmett’s story to people many times and I’ve watched their mouths agape with horror and tears in their eyes. People are always shocked that we are doing so well with this and they don’t understand how. It’s not that I’m desensitized to it or I don’t care, it’s just that I know something big is happening and I know something good is coming out of this. I chose hope.

When he’s in pain, it pains me. I still do worry too. When I can’t sleep, I sneak into his room and watch him sleep. I have been known to fall asleep on the floor next to his crib. I try and reason with God, telling him all the good Emmett could do here with us if he’ll just allow it. But in the end, it’s not up to me and I have to accept that. I will cherish every moment I have with him now and not worry about the future. If we didn’t have the faith we do, I can certainly see where it would break me. The thought that he is suffering in vain, that the seizures could cause irrevocable damage, that surgery could kill him, that the abnormality in his brain could kill him – that’s too much to handle on my own. But because I know it’s in God’s hands, I know Emmett is going to make a difference. Emmett is going to bring about change. What is happening to our family right now – people are watching, waiting to see what we will do. And what we are going to do is simply trust.

We have decided to embrace Craniosynostosis whole heartedly. sebrights Because his skull is triangular, we have a newfound love of triangles and all things triangular. We joke that the triangle is our new family crest. I wrote a book about Craniosynostosis from my 3 year olds perspective, in the hopes other kids can understand. We are working with an illustrator now and will try publishing shortly. I wrote the word Craniosynostosis on the bottom of my running shoes so that I can stomp it into the ground, mile after mile. We made two shirts for him to wear after surgery. One says, ‘chicks dig scars’ and another says, ‘you should see the other guy’. People are going to stare. We know that. We’ve decided not to let it bother us or get to us and use it as an opportunity to educate others.

I have a pretty solid running background. I truly and passionately love running. I have run for a little over 7 years. I direct my own small 5k, I’ve been a fitness ambassador, a pacer, I ran a half marathon 6 months pregnant, I’ve run 2 full marathons, numerous half’s, and way too many 5ks and 10ks to keep track of. I was in the very early stages of training for an ultra when I got pregnant and decided to tone down the mileage a bit! I have run all the way through both pregnancies with my boys including a 3 mile “due date run” with both as well.

My husband and I decided to do Emmett’s (virtual) Endurance Event on June 20th in honor of our son. I am going to run for the entire 7 to 8 hours he is in surgery. I will not rest and will not stop, until he is out safely. I wanted to do this because I could think of no other way to show my level of dedication and devotion to my son. I don’t want him to do this alone. Even though he is in another room, I will suffer right alongside him, in the best way I know how. Of course, running is nothing like having your skull broken apart, but it’s the best I can offer him.

We are asking others to do something on this day in support of Emmett. Print off a race bib and run, walk, bike, hike, or do anything at all that you want to at some point during the day. It doesn’t have to be at any specific time, it doesn’t have to be a certain amount of time, just whatever you are willing to do, whenever you have a chance. Take a quick picture for us so we can immortalize you in our support hall of fame too and that’s it. We get 2 things out of this: 1. People will hear the word Craniosynostosis and it may help raise awareness and 2. We will know we are not alone in this. When I start to run on fumes around hour 5, I will know there are all these people out there who are willing to do something for my son, doing something right at the very moment, and I must keep going.

Training for this has a presented a few problems, mainly due to time constraints. The hospital where he will have surgery is 2-1/2 hours away. Just one appointment can take up an entire day. I am still running regularly, but for the first time ever, I am running for time – not distance. I made up my own training plan based loosely on the Pfitz marathon plan I’ve used in the past. Running for time is a new concept for me to grasp. This week, my long run was 4 hours. I kept looking at my watch to see how close I was to being “done” but had to keep reminding myself it didn’t matter how far I went, just how long it had been. Next week, I will go for 5 hours, and so on. I will peak at 7 hours before coming back down. I don’t know how well my body will handle it, but I’m willing to find out for the noblest cause I can think of.

The hospital has a small gym for inpatient families and that is where I will be running. The hospital is giving me a pager so they can notify us if anything comes up or they need to talk to us. My husband, Tony, will be at my side the entire time as well and will take periodic updates from the doctors as long as everything is going ok. Tony is my biggest fan, running supporter, and coach. While not a runner himself, he knows more about running and training than a lot of runners do!

I have made it my personal mission to bring Craniosynostosis awareness. Early detection is key and there are many doctors out there that don’t even know what is or what to look for! I was recently a pacer for a large 25k road race. I wore a sign on my back about Craniosynostosis urging people to ask me about it. So many people did and it was wonderful to help get the word out. I even got to tell a midwife all about it, who had never heard of it. It’s small, but it’s a start!

My sincerest hope is that this information about Craniosynostosis sticks in at least one person’s mind, and it makes all the difference in the world to someone else. I want Emmett to wear his scar proudly and to know that he helped make that difference.

emmett2

If you would like to join Kathy, support Emmett and spread the word about Craniosynostosis, please join her public event on FB here and invite your friends to do the same. You can access that FB page even if you don’t have a FB account, because it’s a public event. If you’d like to leave Kathy and/or her family some words of encouragement on what may quite possibly be the toughest ultra marathon I have ever heard of, feel free to do so in the comments.

Me? I may not be physically capable of running for 8 hours, but I can  run something and most importantly…I can pray.

'Til next time...

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