Sean’s Story

As a little girl, I always dreamed of becoming a mother. At a very young age, I was always the girl that was entrusted with watching all the little kids in my neighborhood. I can remember when my best friend, Patience, became a sister again at the age of ten and I was so jealous. I wanted a little sister so badly. I think I just wanted to be a caregiver and to take care of something so little and precious.

During college, I studied Child Development, Psychology, and Sociology and thought maybe someday I would become a social worker and advocate and protect helpless children. Never in my wildest dreams did I think I would actually use all my knowledge in my own life advocating for my own child.

When I met my husband, Rick, my life changed for the better. He came to me as a divorced father and had an amazingly beautiful little girl, Karlie. She was only 1 ½ at the time, but we quickly formed a bond that would last a lifetime. Rick was a police officer and served in the military as a Military Police Officer. After 9-1-1, he was deployed to Fort Bliss, Texas for a year and I got to continue to spend a lot of time with Karlie. When Rick came home, we were planning to get married, but he then again, was deployed to Iraq. We quickly got married in my parent’s living room by his brother, who is a minister, and the next day he left. I was so incredibly scared for Rick’s safety and so proud of him at the same time. Sending my new husband off to war felt like the worst thing that I would ever have to go through in my life. And up until that point, it probably was. Thankfully, Rick came home safe and sound and we were clear to start our own life. We had our big wedding that we had planned for so long and everything went off without a hitch. Life was good! Or so I thought…

About a year or so later, I became pregnant. Everyone in my family was so thrilled and excited and we quickly starting planning for our new arrival. I can remember always wanting to have a little girl of my own, but when we found out it was going to be a boy, I was just as happy. After all, I already had Karlie with whom I basically had helped raise since she was just a baby herself. I envisioned my husband with a son and the thought about the bond they would share was very heartwarming. Everything was great up until about my sixth month. I had gone in for a routine ultrasound and the ultrasound tech mentioned something about seeing a little bit of a “Dandy-Walker.” Then she proceeded to go out of the room to get some other people to help her verify what she was seeing on the screen. This was the first of many terrifying moments during my pregnancy. I had no idea what a Dandy-Walker was or what it meant for my unborn child. By the time we left the office, it was determined that my son was lagging behind in overall size and that I would know need to come in for ultrasounds every two weeks. The Dandy-Walker diagnosis just kind of lingered around with no real explanation, until my husband and I went home and looked it up on the internet, of course. After going in for the ultrasounds over the next two weeks, we found out that my son’s body size caught up to where it was supposed to be for that stage of development, but his head continued to lag behind. He was then diagnosed with Microcephaly (“small head”). I can remember being really scared about this and wondering what it meant for my son, but it seemed as if all the medical professionals were very nonchalant about it all. My husband and I were never taken aside and told what Microcephaly really meant and what it may or may not involve.

By my eighth month, I was going in for fetal monitoring every week. I can remember being hooked up to the machines and listening to my son’s heartbeat, just praying that they didn’t find anything irregular. There was one time in particular, that they couldn’t find the heartbeat. After doing this for quite some time and after many more ultrasounds, our doctors came in and recommended that I terminate the pregnancy. They felt that my son would not survive birth and if he did, it would mean that my son would never crawl, walk, talk or function like any other human being. They gave me the option of going to Colorado or Kansas for the procedure. I was in a state of shock! This could not have been happening to me, to us, to MY BABY!! At this very moment, all of my dreams of being a mother flashed in front of me. I wanted this so badly. How could I go and terminate my child’s life when I still heard his heartbeat everyday (we had bought a heartbeat monitor to use at home) and I felt him kicking and moving inside me? I prayed that this was a nightmare and that I would wake up from it very soon. But it was the reality we were faced with and a decision had to be made.

My husband and I did a lot of soul searching at this point. We went through all the questions in our minds of whether or not we could raise a child or want a child that was different or not quite right. Was it fair to bring a child into the world who would have a whole lifetime full of disadvantages and challenges? Our answer was YES! We could raise this child, we wanted this child and it is fair to bring him into this world because he deserves a chance and we knew he would be loved beyond comprehension. So on January 18th, 2006, Sean Austin Hudson was born!

Sean was born via C-section because the doctors were afraid of complications with Sean. I can remember the room being filled with what seemed a hundred different doctors. I was so afraid that I wouldn’t get to see Sean when he was first born or that the doctors would whisk him away and start working on him, or worse, that Sean would not be born alive. But thankfully, we were given a miracle that day. Sean was born at 8lbs 9oz and showed no signs of any problems. Our prayers had been answered.

A few days after we got home from the hospital, my husband took Sean to his first neurological appointment. I stayed at home because I was having a lot of trouble healing from the C-section, plus I couldn’t stand to hear any more bad news. But unfortunately, at this appointment, more bad news was what we received. The neurologist basically told us to not expect much from Sean and that he would never walk and meet the milestones that other children meet. As Sean began to grow, he definitely showed signs of being behind, but at the next neurology appointment, Sean walked into the office and the neurologist was for a lack of a better word, speechless!

Sean began to receive therapy through the Regional Center at a very early age. He had speech, physical, occupational and feeding therapy for what seemed like a lifetime. I felt as if I lived in the therapy office. Sean quickly progressed with physical therapy and made decent progress with occupational therapy, but still had a lot of trouble with feeding and still had produced no speech.

After our first neurologist proved to be so wrong about Sean and full of doom and gloom, we decided to see another neurologist. This neurologist read Sean’s MRI and diagnosed him with “Pachygyria”, a form of Lissencephaly. So I now had to learn about another diagnosis along with Microcephaly. Searching on the Internet only leads you to more feelings of helplessness. It seems as if the worst case scenarios are always listed, but the articles leave out any sort of hope for the child or families. So I decided to search for other families with the same disorders as Sean.

I had found a woman on the internet who had a daughter with Microcephaly who seemed very much like Sean. We talked a few times and then realized how alone we felt because no one seemed to know anything about Microcephaly, doctors included. She decided to start a foundation and the response was amazing. She called it the “Foundation for Children with Microcephaly” otherwise known as “FCM”. When she asked me to be a part of it, I was thrilled beyond words. I finally had a purpose and a sense that I was going to do something to help my son and other children who suffer from the same disorder. The best part of it all was meeting all the other wonderful families and children who actually did walk in our same shoes. It was through FCM, that I was able to meet with Dr. Dobyns, who would then send shock waves through our lives all over again.

Dr. Dobyns read Sean’s MRI and said that Sean had been misdiagnosed. He did not have Pachygyria/Lissencephaly. Instead, he had Polymicrogyria…another big, strange and foreign name given to describe my son. Dr. Dobyn’s said he would have many challenges but that only time would tell. He said that Sean was 80% likely to develop seizures at some point in his life and he felt that Sean would never speak a word. The part of Sean’s brain that was affected by the PMG was on the sides and it would affect all of his oral motor skills (Bilateral Perisylvian Polymicrogyria). This all made perfect sense, because up to this point, Sean’s major issues were his poor feeding abilities, choking, gagging, drooling and lack of speech. At least, now, this diagnosis made sense and I could now start to understand Sean’s struggles from a better perspective.

After the age of three, Sean was no longer eligible for therapy through the Regional Center. He was at this point, being turned over to the educational system for services. I tried to get him approved for Regional Center after the age of 3, but because Sean did not fit the exact criteria, they denied him. At this point, I was happy that they felt he wasn’t disabled enough to be approved, but later, I realized that he was going to miss out on key therapies that he could really benefit from. We did continue speech and feeding therapies through our own insurance for quite some time in order to give Sean the best chance possible of succeeding to the best of his ability.

Today, Sean is six years old. He has made tremendous progress over the years and we are so proud to call him our son! I always thought I would teach my son about the world, but he has actually been the one to teach me. I have always been a compassionate and understanding person, but Sean has taken that to new heights. I now know what it is like to be the person who is stared at because they have a child that is different. I now always make a point to show another handicapped person or a special needs parent some empathy and to give them a smile. I think they understand and appreciate that more than could ever be expressed. Sean has brought out a level of patience in me that I never thought existed. He has taught me to never take even the simplest of things for granted, because for somebody else, it is a struggle. My parents have always taken the time to “stop and smell the roses” with Sean, and to this day, Sean does exactly that. While I would never before take time for things like that, Sean points out the important things …the quality of life, not quantity. The love I have for my child is immeasurable.

Sean is the busiest little guy ever! From the time he wakes up in the morning till the time we physically lay with him until he falls asleep at night, he is nonstop! He walks, runs, plays, climbs stairs faster than I can, rides bikes, plays soccer, rides horses, you name it…he tries it. He may not be perfect at any of them, but his determination and will is his strong point. There is no telling him that he can’t do something. He still does not talk, but he does use some sign language to communicate. The great part about him not speaking (I try to find the good in everything) is that he is so animated. I think we understand him so well because of his gestures, facial movements and actions. He tells a story with his body that we all understand. He is also learning to communicate at school through the use of an IPAD and is making a lot of progress in this area.

One of our biggest struggles is feeding. Sean has always had a tough time with this. He has always had strange eating habits and through feeding therapy and finding ways that work best for him, I have been able to maintain his feedings orally. Sean has become a lot better at eating table foods, but for the most part, he needs assistance. I never allow him to eat anything unless someone is there watching or helping him. The food needs to be cut up small enough and placed on his side molars where he can chew it a little before swallowing. He does gag a lot because of his inability to lateralize his tongue enough to manipulate the food. So because of this, I do puree’ a lot of his food just so we can get enough volume in him to sustain his growth and development. But he loves pediasure and probably drinks about four cans on average a day. He seems to be slowly gaining weight and at a recent GI appointment, we were told to not consider tube feedings at this time. I am not sure what the future holds, but we will cross that bridge when we come to it.

Sean’s drooling has always been a major issue. He will be starting 1st grade in September and still wears bibs every day. Although I wish he didn’t have to wear them, it is who he is and I love him just the same! I am looking into other avenues to help him with this, but I am trying to avoid any surgeries at this time. We just recently were given a prescription for Robinul to help with the drooling. I think it may be helping him a little, but not as much as I would like. But I count my blessings every day that this is only one small issue that I deal with. It could be much worse.

Sean has recently started ABA therapy. He receives 3 hours of in-home therapy five days a week. Although this is very new to Sean, I am hoping that this therapy will help him progress even further. Sean is extremely social and loves to play with others. He loves all of his friends at school and his family. His best friend is his cousin, Cody, who is 9. Cody is amazing with him and Sean just lights up anytime he is around. Cody is a superior role model for him and I am so thankful that Cody is in his life.

I have become actively involved with PMGAwareness Organization, Inc., and proudly serve on the Board of Directors. I am so excited at the opportunity to be a part of something that will not only help our children currently, but for those children and families that will be diagnosed with PMG in the future. It is so amazing to be a part of something that is desperately needed by many. I hope to help make the organization a valuable resource to all who need it!