Travel for Pierre Robin Syndrome

Pierre Robin Syndrome is a set of abnormalities affecting the head and the face of a child. This is a name given to the genetic birth defects if they appear together at birth. In this condition, an infant has a smaller lower jaw and a tongue that falls back in the throat.

If you happen to travel for the treatment of Pierre Robin Syndrome, you would have to carefully plan out your travel expenses and the itinerary. You have to decide for the treatment center and hotels to stay for the treatment of Pierre Robin Syndrome. Be sure to take up the appointment in advance for the treatment of Pierre Robin Syndrome, so that you do not face any trouble.

If you already know where you will be going for the treatment of Pierre Robin Syndrome, or a consultation or a second opinion then click here to plan your travel. Otherwise, click here to get the information about facilities that specialize in Pierre Robin Syndrome.

If you cannot afford travel for medical treatment, please consult our directory of charitable organizations that can help arrange no-cost transportation for you.

For more information: (links to the section below)

  • About Pierre Robin Syndrome
  • Causes of Pierre Robin Syndrome
  • Where to go for Pierre Robin Syndrome?
  • Treatment of Pierre Robin Syndrome
  • Risks associated with Pierre Robin Syndrome
  • Who can go for the treatment?

About Pierre Robin Syndrome

Pierre Robin Syndrome is a condition that occurs at birth in which an infant has small lower jaw, a tongue that falls back in the throat and blocked airways. This system leads to difficulty in breathing and feeding. A few of the children have breathing problems in their initial stage of life and develop other problems later on in life.

Also, some of the affected children have a gap on the roof of their mouth. During pregnancy, one features sets off a series of events that leads to other breathing problems. The syndrome is named after a French scientist who linked the symptoms to breathing problems. Children suffering from this disease need a coordinated care from the healthcare.

Pierre Robin Syndrome is a congenital condition of facial abnormalities in humans. It is basically a sequence that sets off the abnormalities one by one in a specific pattern. Having a small jaw has the tongue rolled in back towards the throat and that blocks the airways.

Pierre Robin Syndrome affects the healthy living of a child. The infant has problems in breathing and to eat. There is an inability to grow and gain weight at the expected rate. In some infants, the growth of mandible is at a normal pace that leads to normal sized chins in the adults suffering from Pierre Robin Syndrome.

Causes of Pierre Robin Syndrome

Presently, the causes of Pierre Robin Syndrome are unknown. It has nothing to do with what a mother is doing or not doing during pregnancy. Researchers have a theory that the fetal position inside the womb might have to do something in the occurrence of PRS.

The cause of PRS might be a genetic disorder too. The disease can occur by itself and less commonly can be a feature of multiple defect disorders. Basically, the cause of PRS is the formation of the lower jaw before the birth of a baby. For some patients, these physical characteristics can result from another chromosomal condition and the most common one is the Stickler Syndrome.

Where to go for Pierre Robin Syndrome?

In USA there are various facilities that can offer treatment for Pierre Robin Syndrome, if you have already determined your child’s symptoms from early stages. As there are more precautions and management rather than the treatment, quite many hospitals cater to the treatment of Pierre Robin Syndrome.

The following health care facilities would help you largely deal with the diagnosis and treatment of the syndrome:

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After the birth of an infant, the doctors know that what kind of treatment the affected child needs. Mostly, the child has to be under observation and sometimes, recommended to some other health care facility if they do not have the staff or equipment.

If you are travelling to other health facility for the treatment of Pierre Robin Syndrome, then you got to be sure that the staff should have multidisciplinary team of therapists and surgeons. If a surgery is needed, then the further prognosis of the treatment is good.

There is no particular test to determine the presence of Pierre Robin Syndrome. The physical characteristics are enough for a doctor to verify PRS in an infant. In some cases, the features resembling PRS may indicate to be because of one of the following:

  • A gene change that is suspected of causing PRS may be found
  • A child who has Pierre Robin Syndrome along with other conditions like heart condition or muscle or bone differences
  • The presence of genetic syndrome such as Stickler Syndrome along with the features of PRS

Treatment of Pierre Robin Syndrome

There is no specific treatment for PRS except a few therapies. The main aim of the treatment for the infant is to maximize the breathing and feeding part. Also, the treatment focuses upon the optimization of growth and nutrition despite the infant facing breathing difficulties.

Also, the treatment of Pierre Robin Syndrome needs to be focused on the pattern on how the characteristics of PRS occur. When in some cases the cleft palate is present, it needs to be closed surgically. The timing of surgery depends on the growth and development of the infant. It usually happens between 6.5 months to 2 years in the presence of a plastic surgeon.

In many patients, the lower jaw grows rapidly in the first year of birth. In some cases, the jaw grows quickly that by the time a child reaches the age of four to six years, their face looks normal because of the growth of jaw. Children who do not experience this catch up, would have to go through a jaw surgery.

The infants facing Pierre Robin Syndrome are to be monitored carefully for breathing difficulties. For the infant to help in breathing a tube might be inserted into the infant’s throat or a surgical opening might be made into trachea through the neck.

As Pierre Robin Syndrome is concerned with many health issues, the parents are to be advised to find a craniofacial health care center. This would help in the coordination and planned treatment by a team of multidisciplinary staff that should be having multiple doctors from various fields.

Risks associated with Pierre Robin Syndrome

The risk of two parents, both passing on a defective gene and having an affected child is 25% in a pregnancy. The risk of having a child who itself is a carrier of the gene is 50% in the pregnancy. The risk of having Pierre Robin Syndrome is the same for males and females. In isolated Pierre Robin Syndrome, the recurrence risk for siblings or offspring is very low. If it is an inherited disorder, then the risk of recurrence goes up to 50%.

Who can go for the treatment?

About 20% to 30% of the cases of Pierre Robin Syndrome have Stickler Syndrome along with it. The Syndrome affects the eyes, hearing and joints. The Syndrome affects the males and females in equal numbers. The incidence of Pierre Robin Syndrome is one in 8,500 births.

The cleft palate occurs once in every 700 live births. So, at birth only a doctor knows that the infant needs treatment because of the visible facial abnormalities as PRS is a totally congenital disorder. If there is a need of surgery, then the best time to go for treatment is when the child is between 6.5 months to 2 years.

Symptoms of Pierre Robin Syndrome include:

  • Cleft soft palate
  • High-arched palate
  • Small jaw
  • Jaw that is far back in the throat
  • Recurrent ear infections
  • A large tongue