Moebius Syndrome: A Rare Disease That Can Break Parents' Hearts

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Moebius Syndrome is a rare disease any parent would not want their child to have. Otherwise, they will be in for a lifetime of struggle to keep their child alive and near normal.

Picture this: a couple is ecstatic about seeing their first baby boy who is being cleaned in the nursery just after arriving in this world through normal delivery. They are excited to find out which of their features were inherited by their child. Then came the doctor with a worried facial expression. The couple immediately sensed something wrong. The doctor regretfully announced to them that their newborn has Moebius Syndrome.

The listening parents were momentarily confused. What on earth is Moebius Syndrome? Little do they know that the worst is yet to come. The next years will be a lifetime struggle to keep their child alive and be given a life that is at least close to normal. Any parent will have his heart bleeding of sympathy and love for a child that is experiencing such a debilitating and difficult disease. In fact, it would be likely that the next few months of their baby would be dedicated to the task of keeping him alive.

Moebius babies are normally unable to swallow or even hold his head up. It is necessary that parents be patient and resourceful enough to make him drink his milk, either by holding his lips together while forcing the milk down his throat hoping to God he will not choke. Worse cases would require gastric and G tubes through the baby’s nose. Parents who are unable to make something work will suffer the sight of their baby getting thinner and weaker. It will take many months, even years, before any improvement will be seen. Which parent’s heart will not break?

What is Moebius Syndrome?

Rare diseases are few and far between. Unfortunately, they exist and many are sorely affected. One of those rare diseases is Moebius Syndrome. It was German neurologist Paul Julius Mobius who identified this disease in 1888. It is a rare disorder that is estimated to be present in only about 1000 individuals in the United States. In Europe, about 300 children are diagnosed to have the disease each year. This disorder is characterized by facial paralysis due to the underdevelopment of facial nerves. Symptoms of patients with this rare disease differ but all of them have a single thing in common, they have underdeveloped or maldeveloped sixth and seventh cranial nerves. These are the nerves responsible for controlling a person’s facial and eye movement.

Symptoms of Moebius Syndrome

People with Moebius Syndrome are without facial expressions, have crossed-eyes and are unable to smile, blink, frown, swallow, move their eyes, hear and show emotion. There are those with the other parts of their body also affected such as a deformed tongue, club foot, hand deformities, missing or webbed fingers or toes, small or missing limbs and low muscle tone making them unable to crawl or sit. Some cases are milder where the patient improves and later are able to crawl or walk. Worse cases are those with difficulty in breathing and have other respiratory complications.

Cause and Treatment

It is unfortunate that both the cause and the treatment of Moebius syndrome are still unknown. There are many studies being conducted and though there are some findings, none are conclusive. Worse, this disease is extremely rare that there were many cases of misdiagnosis especially the older generation and those without access to specialists.

The only good thing that can be said about Moebius Syndrome is that it is non-progressive, meaning it will not worsen over time. In fact, many cases of patients improving and living a normal life are recorded.

The treatments made on Moebius Syndrome patients depends on the symptoms and are supportive in nature. No outright medical cure exists to date. Cosmetic surgeries may be done on deformed parts of the body such as the jaw, hand and foot. Physical therapy can be applied to problems with muscles. Difficulty in speaking may be improved by speech therapy. Crossed eyes can be reversed by surgery. Respiratory problems may be dealt with by tracheotomy. Those having hand deformities may undergo occupational therapy to know how to dress up, wash, etc. Infants may be given specially-made feeding tubes or devices to ensure proper feeding. Complex surgeries may be done to replace muscles and nerves in the corners of the mouth to counteract the paralysis of the face. Antibiotics may be taken to fight infections due to complications brought about by the disorder.

While all these treatments may do well, one thing that will surely matter to the patient would be the love, care, time, support and kindness only a parent can bestow to an innocent child who does not even understand why he undergoes such suffering.

Since parents of Moebius patients are tormented by their child’s pains, help and support from anybody kind enough to give it would surely go a long way. It may lighten their heavy load if they get to share their stories with others and have others understand their predicament. The internet is now home to many such forums and those who will partake may help these parents mend their broken hearts.                                                                                                                                                                                                                                                                                                                                                                                     


Posted on Apr 13, 2010
eileen szydlowski
Posted on Apr 13, 2010