“Finding out I was pregnant with my son right after my 20th birthday had come as a shock, especially since just 4 months earlier I had given birth to my first child, Evan’s older sister, Zoey. Being pregnant again so soon and having a 4-month-old baby girl was a lot to digest for someone my age. Lucky for me, I had a huge and very supportive family. I truly believe they were the only thing keeping me from losing my mind.
I got pregnant with Evan in October of 2005. I was great about going to every one of my doctor appointments. Everything seemed to be on track until April of 2006. I was now 6 months pregnant and the doctor was trying to determine the sex of the baby. I had an ultrasound done in the office, but he wasn’t able to find anything. My doctor suggested I go to the bigger hospital to see if a tech there could provide me with some answers. The ultrasound tech was sweet, but she couldn’t seem to figure out the sex either and suggested I go eat something sweet to help the baby become more active and move around. When I came back, she was eventually able to see I was having a little boy. She seemed worried, but told me, ‘Your doctor will discuss anything further with you in his office.’ When it came to my next appointment, my doctor informed me, ‘Your son could possibly have a short femur, but nothing else is wrong.’
Well, 3 months passed, and it was time to give birth to my son! At midnight, my mother, my stepmother, and my son’s father went with me to pick out a homecoming outfit before we headed to the hospital where I would be induced. After waiting 8 long hours, Evan Kenneth Sebesta was born at 9:01 a.m. on June 27th. The most unusual thing about his birth was the fact I did not get to see him right after he came out. Evan was whisked away by several nurses with the doctor close on their heels. My stepmother grabbed my mother and left the room, holding her. My moms were both visibly shaken.
Unexpected Limb Difference
I overheard my stepmother tell my mom out in the hall, ‘You’ve got to get it together. They’re going to need us and our support more now than ever!’ A short time later, the doctor came to us and told us, ‘There is a problem with your son.’ The doctor stepped into the room and said, ‘Ms. Sanchez, there must have been some complications during your pregnancy. Your son was born with a cyst on the back of his head and there is a problem with his limbs on his right side.’
I remember looking at his father and laughing. This had to be a joke somebody was playing on me. After realizing his father was not laughing with me, I knew it was no longer a joke. I started bawling uncontrollably. We sat there holding each other and trying to understand what exactly had happened. My moms came back into the room and asked us what the doctor had said to us. I told them and they told us there was more to it. My stepmother told me, ‘Phylicia, I need you to focus and hear me. He’s alive and breathing on his own. You need to know this more than anything. Evan has a cyst protruding from the back of his head, he has no arm or leg on the right side and only a partial left arm with 2 fingers and a partial left leg with a foot and 2 toes.’
I instantly blamed myself. I started to cry all over again thinking I had to have done something wrong while I was pregnant. My stepmother cursed and spoke to no one specific, ‘She needs to see him!’ She then turned to me and said, ‘Phylicia, I am going to go get him for you. You need to see he is okay and just how beautiful he really is.’ She left the room and quickly returned with my son in her arms. He was completely covered, except for his face. He was truly beautiful. At that exact moment, everything else in the world didn’t matter but making sure he would be OKAY.
The rest of the day was kind of a blur. Once my mom took Evan back to the nursery, my stepmother informed the doctor he needed to give me medicine to help me sleep so I could recover from giving birth. She told him, ‘Her body is exhausted, and she needs rest. She’s not going to be able to do that without help. She’s way too upset about everything!’ When I was given the medication to help me sleep, only my mom, stepmother, and boyfriend were there.
A few hours later, when the doctor finally woke me up, my room was bursting at the seams with my family, my father was holding my hand and my son was in front of me in an incubator. ‘Baby girl, you need to wake up,’ my father said. ‘We need you to sign some paperwork so we can get Evan to a hospital that is better equipped to take care of him.’ He had to be transferred, and only I could give them the permission they needed in order to do so. After that, I was moved to my own room and Evan was driven to another hospital with his father by his side. I was never alone, though. I had over 2 dozen family members and friends come by to just sit with me or pray over the whole situation. The only thing that bothered me was that I was at one hospital while my son was at another, 20 minutes away.
The next morning, my doctor came in to see how I was doing, and I demanded, ‘Let me go so I can be with my son!’ I wasted no time getting from one hospital to the other. The first time I saw him connected to so many wires and still in an incubator, it was hard. There was no blanket covering up the reality of the situation. One look had me falling head over heels in love with the little guy who had only been in this world for a little over 24 hours.
After being in that hospital for a few days, we had a big decision to make. The doctor informed us Evan would need to have head surgery in order to remove his cyst. This cyst consisted of spinal fluid and we were not able to hold him until it was gone. ‘We need to take care of this sooner rather than later. We are not 100% sure if he will survive if the sack is punctured,’ the doctor said. We knew he was small and fragile. After talking with our parents, we did what we thought was best for him and signed for him to be transferred to yet another hospital to have the surgery. Evan was right at a month old when he underwent his first of many surgeries.
Evan has had a total of 7 surgeries within the first 8 years of his life. He had the cyst removed at a month old, his penis circumcised at 6 months, eye surgery at 2 years old, major open back surgery at 4 years old, tubes in his ear twice at ages 5 and 7, and major open back surgery again at 8 years old. Evan’s head surgery and both back surgeries are days I will never forget.
Evan’s orthopedic doctor had informed us it was imperative he had back surgery due to his scoliosis. His spine was severely twisted and growing out of the side of his back. He said, ‘If his spine continues to grow the way it is without any surgery, his back will eventually pull his ribcage into his heart and most likely end up killing him.’ I was devastated. How could this precious, little boy survive birth and 3 other surgeries only to have to endure another major surgery? We were only given a 25% chance his small body would be able to make it.
It was the longest 8-12 hours of my life. There was constant pacing and worrying as I watched for his doctor to walk through the door to tell me Evan had survived. When his doctor came through those doors, I think I was finally able to breathe again. ‘Evan is alive and going to be OKAY!’ He had to stay in ICU for a few days, but we would not have to worry about his ribs hurting his heart.
Evan’s second back surgery was needed to fix a few screws which had come undone due to his growing. The plan was to fuse his spine so he would no longer grow, because they were not sure Evan’s body could handle a 3rd or even possibly a 4th back surgery. Unfortunately, we were only given a 50/50 chance he would survive this surgery. The odds were better this time, but it did not stop me from worrying any less. Sitting in the waiting room, waiting to hear any news about my son was grueling. I wondered what I would do if he didn’t survive. How would I explain it to his big sister who was only 9 years old at that time? Thank God, after 8 very long hours, I was given the good news he had survived the surgery.
Evan’s official diagnosis is Phocomelia. He does not have any limbs on his right side, part of an arm and 2 fingers, part of a leg, and a foot and 2 toes on his left side. He has scoliosis, vision problems, and is mentally delayed. He had upwards of 7 doctors at one point in his life. He had an orthopedic doctor, an ENT doctor, a gastroenterologist, an ophthalmologist, a neurologist, a pediatric special team and his primary care physician. I am extremely happy to say now he only must deal with his pediatric special team and an ophthalmologist once a year and his primary care physician as needed. Even though he doesn’t need as many doctors, it doesn’t stop me from constantly worrying. I still catch myself checking his breathing when he’s sleeping or jumping every time he coughs. Any time I get that ‘motherly feeling’ something is not right, I am right by his side checking on him. I honestly don’t think that feeling will ever go away.
Evan lives at home with his big sister, his papa, and me, mama. He is 100% a mama’s boy unless he is tired, then he wants his papa. He loves playing with his big sister who is a whole year older than him. She is a teenager so she doesn’t always feel like doing what he wants to do, but they love to cuddle and watch cartoons together. I like to call them my twins because they don’t like to be apart from one another for extended periods of time. Any time he is sick or must go to the hospital, she is always by his side. This started when she was only a year old and it hasn’t changed.
My son has gone to many schools in different districts over the years, and people from as far back as pre-K still follow him or check-up on him from time to time. He just has a magnetic personality which draws you in.
Things have not always been easy and we are still learning about Evan every day. There are still a lot of unknowns when it comes to him and his disorder. I have learned to never take a day with him for granted. Each day is a blessing. Three different times the odds were against my son and each time my son proved them wrong. I am happy to say today, Evan is a very happy 13 year old who is in junior high. He knows about 30 words and can respond to yes and no questions. He uses an iPad at school to communicate with his teachers and to do his classwork. He is always smiling, laughing, and is honestly just a generally happy kid. The only time he is not that way is when he is sick. He has many friends and everybody who meets him ends up wrapped around his 2 little fingers. He is learning to talk more and progressing every day. I refuse to listen to doctors when it comes to his ‘life expectancy.’ I choose to do everything in my power to make sure he is a happy and healthy teenager who is spoiled rotten by all those who love him!”
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