Moebius syndrome: It was October of 2006 that I found out I was pregnant with my sixth child. I always knew I wanted to be a Mommy but didn’t know I’d have so many. Although each & every one of my seven children are gifts from God & I am so Thankful. I didn’t tell people right away because from the beginning I knew something was different, something wasn’t right? I just had “that” feeling. I guess you could say it was woman’s intuition. I was sick, very sick from the first few weeks of pregnancy and that had never happened to be before, but I knew each pregnancy was different. I had my normal monthly check ups, heart beat was great, everything was wonderful. I had a 15 week ultrasound & he (didn’t know he was a he yet though) checked out fine. I felt relieved but still nervous & couldn’t shake the feeling of something being wrong. I was scheduled for another ultrasound at 20 weeks & I couldn’t wait to find out what my lil peanut was. By that time I was already feeling my baby move. What a wonderful feeling! Nothing like it! The day came for my 20 week ultrasound & I was so excited yet deep down very nervous. Something just wasn’t right and I knew it. I remember that day like it was yesterday. I layed there, seeing my little man, yes it’s a BOY! So excited because out of the five children I already had only one was a boy. Yay, Gabe was going to have a brother! The lady checked all his organs & measured my lil man, everything seemed ok. After all she didn’t say otherwise. I felt good! I then had to go to see my midwife for a regular prenatal check up. They called my name and then took me into a office. What? Why am I in this office and not a examining room? Something was wrong and I knew it. I immediately started shaking. What was minutes waiting on my midwife seemed like hours. I had full trust in my midwife Nadene Brunk. She was there for me with all of my children. I needed to see her, to talk to her, I needed to know what was wrong with my baby, NOW! Finally she came in and I could tell it wasn’t good, the look on her face. She set down beside me and took my hand and told me my son had no hands, clubbed feet and something wrong with his heart. I can still hear her words, “we don’t know if he will even make it inside of you much longer so you have to make a decision.” I immediately fell to my knees and wept. Why? Why? I was sent to St. Mary’s Hospital to see a specialist, Dr. Love. (I love him). They also had better ultrasound equipment there. I remember feeling like I was in a dream, a nightmare. I went on my way, still crying and still feeling my baby move inside me. I had to pull over a few times on the way that day, I was literally sick. How could this happen and why me? Why my baby?? I arrived at Dr. Love’s office and they were expecting me so they took me right in. He used a 3D machine to take a look at my baby and there was some good news. He didn’t have anything wrong with his heart! Thank You Lord! Now I knew my son could live! He wasn’t going to die! Dr. Love did confirm that he had no hands and clubbed feet. I was asked if I wanted to abort. Abort? You want me to kill my child after you just told me his heart is strong and he will live! I was furious! Dr. Love sat and talked to me for what seemed like hours. He told me that God doesn’t make mistakes and Jayden was given to me for a reason. He also told me that Jayden’s brain will already be “programmed” for what he doesn’t have & what he does. That its not like us loosing a limb. He made me feel so much better. I thank God for Dr. Love every day, to this day! We agreed on doing an amino & waited for the results. When I got home I told my family what was going on and their advice was to end the pregnancy. I couldn’t do it. I was feeling my baby move. I seen him on the ultrasound screen. I heard his heart beat. I love my baby! The results of the amino were good. He didn’t have anything life threatening going on. I could live with the rest! What a relief! Dr. Love followed me closely with each week that passed. I had ultrasounds every week to watch Jayden’s growth. At 30 weeks I was told that Jayden wasn’t growing and was put on bed rest in the hospital. After all how could I be on bed rest at home with 5 kids? Wasn’t happening. The bed rest worked! He began putting on weight! Thank God! Those were the longest six weeks of my life. I felt like I was in jail. But I was willing to do anything if it meant having a healthy baby boy. I was released at 36 weeks but still had to take it easy until he was delivered. I was scheduled for an induction at 38 weeks. I arrived bright and early the morning of June 19, 2007. Ready to meet my miracle baby. That was a very stressful labor because I was scared. I didn’t know what to expect. I just wanted my baby to be alright. I Prayed and Prayed that day, I’m sure the good Lord heard me because he answered my Prayers that day. I ended up having the epidural that day. I hadn’t had one with any of my other labors. I just wasn’t under control that day with all the emotions. Evidently the doctor gave me a little to much in my epidural that day because I couldn’t even move my arms. But I was able to relax and collect myself. I even got to take a little nap for an hour. I woke up feeling sick to my stomach so I woke Jayden’s daddy Justin up to bring me something. I ended up getting sick and I guess as I was getting sick it was also pushing because Jayden was being born. I still couldn’t feel anything, even my arms. Jayden Wade Schoening was born into his daddy’s hands that day at 5:37 PM. He came so quick my midwife and the nurses didn’t even make it. That’s something his father will never forget. He weighed in at 5 lbs 7 ozs and 18 inches long. He was so tiny. He was perfect in my eyes. He did have thumbs on each hand, which aren’t true thumbs. His left foot was extremely clubbed, with four toes in the normal position and one small toe on the side. His right foot only developed to the heel. I also noticed that he had a “droopy” face and none of the doctors that saw him could tell me why. They thought maybe there was “nerve damage caused by the way he was laying inside of me” and would get better in time. He also had a hard time latching on so I pumped and finger fed him at first. Just until he would latch on. Over all he was a healthy baby and we were discharged from the hospital in just a couple days. He had lots of appointments his first month of life. He had everything on and in his body checked out. Everything checked out fine. We also saw a genetics specialist that couldn’t explain why this had happened to my son. I will never forget the night before the appointment with the genetics specialist I saw a TLC program about Moebius Syndrome. I just knew that’s what he had. I knew in my heart. But when I brought it up to her (genetics) she said “No, if that’s what he had, he would be much worse off”. I was just told he had “birth defects” or “abnormalities”. He wasn’t putting on weight all that great with just nursing so I started to give him a bottle to and his weight picked up. We started Early Intervention which helped me a lot. He was on track with all his developmental milestones and I was one proud Mommy. He had surgery on his eyes at 6 months old for crossed eyes. I also found out he couldn’t move them from side to side. I still had no answer to why or any diagnoses. He continued to grow and thrive, but he continued to have that “nerve damage” to the right side of his face. You could really see it when he cried. When he was almost two years old I decided to change eye doctors due to the distance of the one he had. I walked into the examining room of Dr. Christian Carter and he immediately told me Jayden has Moebius Syndrome! Thank You Jesus! I finally after more than two years have an answer! Thank You Dr. Carter! He showed me a book about Moebius and I knew that’s what my little man has. I couldn’t believe after all the doctors and specialist that Jayden had seen in his 2 years of life, it was his eye doctor that gave me an answer, a actual name. Good bye “birth defects”! Good bye “abnormalities”! Hello Moebius Syndrome! Now I could research, now I could find some answers. It was like a weight had been lifted off of me. Jayden is now 4 years old and nothing holds him back, nothing! He can do anything and everything he puts his mind to. He’s amazing. Here I am, the Mom, thinking I have a lot to teach him when after all we’ve been through he’s the one that has taught me. That there is nothing I can’t handle with him by my side. He is such a strong little man. I cherish him. He’s doing awesome. He can walk/run, with or without his braces. He can pick up things that even I can’t. He talks, sings and yells wonderfully. He even has a crooked smile that I adore! I worry about how things are going to be in school for him. I know kids can be so mean. Sometimes it breaks my heart to think about it. But I know what ever happens I’m going to be here for him always, like I have been since the day in my doctors office when I fell to my knees in tears. There are times I still fall to my knees crying not because of pain but because of joy. For now I know he’s perfect!!
Melissa Ann Zummo
Proud Mommy of Jayden Wade Schoening