ERIK'S STORY
(By his mom)

Erik was born (C-section) on december 21st, 1994 in Lima, Perú. He has a very SLIGHT case of Moebius Syndrome:

1. He has lateral eye movement

2. He can swallow with no problems

3. He had no low muscle tone: start pulling up his head by 2 months, crawling by 6/7 months and walking by 10/11 months

4. He rolls his eyes upwards (blank)

5. He can´t close his eyes completely

6. He can´t smile normally or make bilabial sounds like M, P or B although with speech therapy he has develop the ability of joining both lips and saying words with M,P or B but not spontaneously.

7. He has trouble sleeping (I don´t know if that is Moebius)

8. His eyes and ears are very sensitive to light and strong sounds (respectively)

9. He has quite a lot of trouble every time he gets a cold (ear infections)

Our story is like those of many of you: I had a normal pregnancy and a C-section. Erik was born with 3.445 KG (about 7.59 pounds) and 51 cm (about 1.57 feet). I knew something was different about him from the first moment I saw him but still he was beautiful. Not one of the doctors (gynecologist, obtetrician or pediatrician present at the operation) said anything about an anomaly. He was taken for the regular cleaning and test for newborns and I went to rest. That night when he was put onto my arms I observed him for the first time. His head was of regular shape, his eyes were closed, he had a little nose but his mouth was somehow different and he didn´t quite open it to cry. It was like the muscles in his little face were hard and his mouth too small and in a triangular shape. His whole body was normal: two arms and hands with 10 fingers, two legs and feet normal and very big. The first time I tried to breastfeed him he couldn´t open his mouth. I thought “the nipple is too big…his mouth is too small…” then I learned how to squeezed it in and he started to “eat”. But then we realized he had trouble sucking. I had to constantly push his jaw up and down for him to get some milk out. We thought it was because he was falling asleep exhausted of the work sucking meant for this little body. We stayed at the hospital for three nights because of the C-Section I was given but anything rare was done to Erik.

At home everything happened too fast. I was tired and in pain because of the operation. My mom and the nanny we hired helped a lot with the baby. I started giving him bottle (my milk and formula) from the beginning to measure the amount of milk he drank. He was a good eater but it took us about an hour to have him finish the bottle. So we had a great idea! and open a bigger hole in the bottle nipple, this way he ate very good and quickly. When he got his first check up with the family´s pediatrician he said nothing about any anomaly. He didn´t even see there was any problem with his mouth…except it was triangular.

The first neurologist that looked at him, at age 11 months, said for the first time something was wrong with the SIXTH nd SEVENTH NERVE but did not mention MOEBIUS SYNDROME. It was not until we saw a broadcast about Chelsey on TV and the smile operation that we put a name to Erik’s condition. Then with the name in our heads, he visited another neurologist and another and finally got Moebius diagnosed.

Erik started developing very quickly. He had great muscular tone, he got his head up by the tenth week, he crawled by 7 months and started walking by 10-10 1/2 months. But he was very clumpsy and fell quite a lot...he is flat footed may that´s the answer to this. He went to Nursery School by 15 months, started talking by 18 months, some words not whole sentences. He started with Speech Therapy aroung 18 months and that helped with the bilabial sounds.

He now can sip with a straw… he uses his teeth to hold the straw…he can blow balloons but he still can´t whistle or smile normally showing his teeth. He has a smile of his own…very horizontal but in his drawing he makes a big “U” smile. He is a very happy kid and he knows the muscles in his face are “hard”… we have not yet given him A name for his problem. He is going to Kindergarten now and I know he will deal with the teasing that I´m sure will come in the following years! He loves Tae Kwon Do (green belt), soccer and swimming (with goggles!).

Here in Peru I´ve met only two parents with kids with Moebius (severe cases) but I’m sure there are a lot of them out there.

Milena Portaro       Email. Milenaportaro@comercio.zzn.com