Caring For Children With Moebius Syndrome

Pregnancy is one exciting journey in a woman`s life. It is filled with mixed emotions but most of all the excitement of meeting the new arrival overrides all else. Due to varying conditions, individual circumstances and sometimes unknown reasons children are born with abnormalities. One such abnormality is Moebius Syndrome.

Signs and symptoms

Moebius Syndrome is a very rare congenital neurological disorder which is caused by the underdevelopment of the 6th and 7th cranial nerves which control eye movement and facial expression respectively. Most people born with this syndrome suffer complete facial paralysis, they cannot move eyes from side to side neither can they make facial expressions. Symptoms in infants usually show up as a combination of the following

  • Difficulty in nursing
  • Crossed eyes
  • Drooling excessively
  • Deformity in limbs resulting in clubfeet, missing fingers or toes
  • Chest wall abnormalities
  • Breathing and swallowing difficulties
  • Difficulty in blinking which results in corneal erosion

Because of the paralysis of the lips, children may have difficulties in speaking. Often at times these children are mistakenly labelled as mentally retarded or autistic due to their expressionless faces and frequent drooling.


Care and treatment options

There may be no cure for the syndrome and the arising complications may seem overwhelming but all affected should not despair, there is hope. Doctors come up with a number of options for successfully managing the symptoms and potential complications of the disease allowing a child to live as normal a life as possible

Smile surgery – An operation also known as the smile operation. It involves removing muscle from other areas of the body (especially thighs) and grafting it onto the corners of the mouth to allow the child to smile.

Feeding and nutritional support – because of this syndrome, almost all infants fail to nurse properly. Alternatives to breast feeding can be used and these may include the use of;

  • Special feeding bottles
  • Feeding using syringe
  • Feeding with spoon
  • Feeding tubes
  • Nipple shields

Vision problems treatment – due to failure to blink properly, dry eyes are with this syndrome. Consistent use of eye drops is quite effective in managing this problem. If the drops are not helping, sometimes an operation to partially open the eyelids is carried out. Corrective treatments for crossed eyes are also available, eye patches or surgery work well too.

Dental problems treatment – many children with Moebius Syndrome have a higher chance of developing crowded or misaligned front teeth. Because of such teeth they usually suffer from dry lips and gums. Orthodontic devices can correct this problem enabling proper closing of the mouth. In severe cases jaw surgery may be an option.

Speech language therapy – due to failure to make facial expressions, it is difficult for children to convey their feelings. They can however learn new ways of communicating. Use of body language, physical posture and tone of voice compensate really well. Specialists in this area can help develop and refine these means of communication as well as control breathing and swallowing.

Counselling support – because of the syndrome, the affected may feel different, discouraged and left out. Counsellors and social workers can be a good source of help so the child can learn to live with the disease.

With the right care and support, children with Moebius Syndrome can live normal lives and grow up without feelings of rejection and low self-esteem.

The author, Maverick Manny is a researcher and writer. He especially enjoys creating awareness about various diseases affecting ordinary people. A subject he has lately been passionate about is Moebius Syndrome.

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