Moebius Syndrome: Willhelm
While my mommy was pregnant, at her 20 week ultrasound check, the doctor seen I had bilateral clubbed feet. She was told to go to the childrens hospital in milwaukee, wi. She was seen by a parinatologist that had done 3 more ultrasounds to see if anything else was different. They ,at the time, did not notice anything different. So when my mom had her third scheduled c- section I was born. January 19th, 2010, weighing 6lb. 13oz. My mommy and daddy seen my clubbed feet when I entered the world and the doctors did all the regular newborn screenings. My daddy went with me and the nurses to the nursery, while my mommy went to the recovery room. While my mommy was in recovery, my daddy had noticed my face was different than what my sisters looked like at birth. He also noticed my chest wall on the left side was moving in and out whenever I took a breath. He took two pictures of me and decided to visit my mommy and show her. As soon as my mommy seen daddy walk in she knew something was wrong because he never went into the recovery room when my sisters were born. He showed her the pictures and they started crying with joy,curiousity and also wondering what was wrong with me. Why did my face look different on each side? why was my chest that way?
My daddy gave me my bath and mommy was ready in the room waiting for me to start to breastfeed me. When I tried to eat I had a slight suckling movement but not enough to eat. My mommy and daddy knew something else was wrong. They asked the nurses and the doctors but no one knew the answers. They kept trying to feed me even through a bottle but no luck. Finally it was about 12 hours and I still havent ate. So they placed an NG feeding tube down my nose. So I could get my milk. My parents were so scared and nervous. They didnt know what was going on with me or why.
So my pediatrician had made the decision to transfer me to childrens hospital in Milwaukee in the morning. My mom was discharged and my parents met me down there. They placed me in NICU. I was there for 4 days. There were so many different types of doctors that performed every single test on me in those first 2 days. They talked with genetics and amoungst themselves but no one knew. Since I was breathing fine and was keeping food down with the NG tube, they decided to transfer me to Center 7, its the place were babies go after NICU. On day 7 the optomalogist and neurologist had visited me. The neorologist took one look at me and diagnosed me on the spot. I was diagnosed with MOEBIUS SYNDROME. I had the crossed eyes, I cant move my eyes to the left or right, my lids don’t close all the way when I sleep. I have facial paralysis on my right side of my face, I have a half smile. I couldnt suck. I have my chest deformity and also my clubbed feet. He had it nailed to the T. He answered almost all questions. Everything fit. My parents googled it on the internet later that night. And all the pieces to the puzzle were fitting together.
While I stayed in the hospital, my parents and sisters had to stay at the Ronald McDonald house. They would take turns coming to visit me and be there for my strict 3 hour feedings. And my sisters were not able to visit me since they were under the age of 12. My mommy and daddy demanded my ortho to come in the room and do my first castings for my clubbed feet because the doctors wanted to wait until I was discharged. But they didnt know when that would be and the ortho told my parents that the sooner the better. He was dissapointed that my mommy had to call him and the other doctors didnt.
The doctors decided to have me see a speech, physical and occupational therapist. They seen me almost every day. My parents were taught different ways to try to help me learn how to drink from a bottle, they tried every type of nipple, and finally decided to stick with the long haberman bottle. They would hold my cheeks together and stimulate my mouth so I would relate a filled tummy with sucking. I eventually started to suck somewhat, and would only drink from a bottle with my parents. Ecspecially my mommy.
The doctors said I couldn’t leave the hospital unless I drank more. But even when I improved they still said the same thing. My parents got frustrated alot with them. This went on for 3 1/2 weeks. Since I had two sisters waiting and the swiching back in forth to visit/stay with me and also we were far from home. My mommy was getting very emotional one night and broke down. She wanted to take me home so she could be with all three of her kids at the same time. And shes also a stay at home mommy. So after talking with a couple of doctors she demanded I be discharged.
With in two days of being discharged I drank every bottle every three hours. My parents and sisters were so proud of me. And after one month my mommy found a new bottle that fit my mouth better and I got a better suction. It was a MAM bottle from Kmart. The nipple is wide but flat. I didnt have alot of leakage with not being able to close my lips. It became my favorite and I drink from it all the time.
I started Birth to 3. And met my new therapists. They were awesome. They helped me learn alot of things I didnt know I could do. They taught and reminded my parents of things to show me or help me do.
After 5 castings on my legs, I had my first surgery. I was 2 1/2 months old. It was an achilles tendon release for my clubbed feet and a 6th casting. When the last casts came off I had to start to where a foot brace so my feet wouldnt turn back in. I wore it the first 3 months 24/7 and now I wear it only at night time for a couple of years. I get mad when I cant move how I want to at night time.
My parents noticed I started to fall behind on my motor skills. But I still improved even though It took my longer. My mommy tried feeding me baby food. It would just drip out of my mouth. So she would thicken it and I learned to suck on my fingers while having food in my mouth and I am able to eat.
I seen Genetics at around 7 months old. They knew what my parents thought but was never confirmed until now. I was diagnosed with POLAND SYNDROME also. I have a chest deformity and either no or an underdeveloped pectoral muscle. My parents also noticed that I dont use my left arm as much as my right one.
At the age of 9 months I had my second surgery. Strabismus surgery. The results were amazing. My left eye is straight, my right eye turned in. But since I have a dominant left eye my parents have to patch it so my right eye can move back outwards.
Since I’ve had the eye surgery my motor skills sky rocketed. I learned how to sit, pivot and balance better. Better hand eye coordination.
At one year old I had to have my 3rd surgery. Tubes in my ears. I had a double ear infection that lasted 6+ weeks and I had 3 different antibiotics.
After i turned 1 year old I learned how to scoot, wave hi/bye, put both hands in the air for “so big”. I also am trying to pull my self up to stand but Im not strong enough yet. I get to my knees.
I am still growing and learning and have a long road ahead of me but my parents and sisters love me so much. And they are here with me for my journey that no one knows but God.
My whole family loves me for who I am and is very blessed for me to be here!!