Pierre Robin Syndrome is also referred to as Pierre Robin Sequence or Pierre Robins Complex. This is a condition mostly found in children wherein a child is born with inappropriate jaws. The infant may be born with a lower jaw smaller in size as compared to the face; this condition is known as micrognathia. The child born with Pierre robin sequence may also be born with the mandible set significantly back as compared to the upper jaw; this condition is known as retrognathia. This causes the tongue to be displaced backwards, closer to the throat. Such displacement may also cause obstruction to the air- passage during respiration; this condition in known as glossoptosis. Most of such babies may also suffer from cleft palate, but not all; and none of them will have cleft lip.
Since, the discovery of this condition there has been more than a few names given to it which may also include Pierre Robin Triad or Robin Anomalad etc. Looking at the dissimilar features and factors resulting to Pierre Robin syndrome, Pierre Robin Sequence or Pierre Robin Complex seems to be well descriptive names. The name is derived after Pierre Robin who was a French doctor to first inform about the issue (cleft, palate, smaller lower jaw and dislocation of tongue) in the year 1923.
Pierre Robin Syndrome causes:
The basic cause of Pierre Robin Syndrome is said to disability of the lower jaw to develop during fetus development before birth. It is studied that about 7 to 10 weeks of pregnancy the lower jaw develops fasters that allows the tongue to move down from the mid of the palate. If the development of the lower jaw is not appropriate and does not happen properly then the tongue may hinder the closure of the palate that may cause cleft palate. The small or dislocated lower jaw also causes the tongue to shift backwards resulting in difficulties related to respiration. However, in some cases such physical conditions may be result of other factors.
How frequently is Pierre Robin Syndrome diagnosed?
Pierre Robin Syndrome is quite an uncommon physical condition and not so frequently diagnosed. It is less frequent and approximately 1 out of every 2000 to 3000 babies is born with this conditions. However, cleft lip or cleft palate is reported 1 in every 700 live births.
Chance of children getting affected in future:
Most people wonder whether future children may get affected with the condition. It is crucial to know that Robin Pierre Syndrome may occur without any reason by itself or it may sometimes be result of other syndromes. Parent who has a child with Pierre Robin syndrome have around 1 to 5 percent chances of having another child with the same issue. Medical industry has not yet come up with enough or accurate studies to precisely predict the disorder. In case Pierre Robin syndrome is diagnosed in patients suffering from other syndromes such as Stickler Syndrome, Treacher Collins Syndrome, chromosomal or genetic factors may determine whether more afflicted children will take birth. Pierre Robin sequence is also found in children with teratogenic syndromes (conditions that are environmentally induced), for example, Fetal Alcohol Syndrome or Fetal Hydantoin syndrome. It is crucial to get the afflicted infant examined by a geneticist, who can examine and evaluate prevalence of other associated syndrome.
Pierre Robin Syndrome- Symptoms:
There are certain symptoms that may be seen in case of Pierre Robin sequence, some of the common symptoms are:
• Cleft palate
• Significantly arched palate
• Smaller jaw as compared to the face
• Jaw positioned significantly backwards in the mouth
• Natal teeth
• Tongue appearing larger in size
• Recurring ear infection
Problem faced under affliction of Pierre Robin Syndrome:
Pierre Robin syndrome is like any other birth defects and may vary in severity. Some infant may have more problems as compared to other children with fewer problems related to Pierre robin complex. Some of the most common problems noticed in infants with the condition are related to respiration in child as well to feed the child. It is essential for the parents to understand how to position the child in order to reduce difficulties, for example, parents should not place the baby in hi/ her back. There are several child who may not be benefited only by appropriate positioning, as they may have t be supported with specialized with specially designed devices that may help in keeping airway unobstructed. There are afflicted children who may also experience ear issues such as fluid accumulation in or around the ear. A ventilation tube may be positioned strategically inside the ear to reduce the accumulation of fluid. In some cases when other treatments do not work then surgical treatment may be suggested to help the baby breathe properly.
Pierre Robin Syndrome treatment:
In case of many new born babies the lower may develop faster through the first year of his/ her life. In some cases the mandible or the jaw develops so significantly that by the time the baby turns 5 to 6 years old the conditions looks normal. Children who do not undergo such significant development may have to undergo surgical treatment at the jaw. However, there is no confirmed study on why children mandible develops at such faster and varying rate. If any cleft palate is experienced it should also be closed through surgical procedures. Generally surgery on the affected child is done during his/ her first or second year; however, in some cases it may depend on the development rate of the mandible. It is essential for a child with cleft palate to be timely examined by speech pathologist as these children are at risk of developing defective or delayed speech issues.
It is essential to take the conditions seriously. Children suffering from Pierre Robin syndrome may also have other physical issues it is advised for parents to take the child to craniofacial center where appropriate assistance will be provided to you. The experts will evaluate the condition and suggest strategized suitable treatment for the Pierre Syndrome affected child.
Pierre Robin Syndrome Pictures
Tears are streaming down my face as I look at your website and realize that my newborn grandson may have pierce robin syndrome. He has all the characteristics. Our problem thus far has been getting the pediatrician to take it seriously. I am afraid that the baby is not getting sufficient oxygen for proper brain development. He does not seem to turn blue, but his breathing is exceptionally shallow at times. We are so afraid to put him in his bed because of his breathing difficulties. My daughter is adimate about breast feeding but it is very frustrating for both she and the baby. She is using breast shields and that is allowing him to get enough “nipple” in his mouth. The pediatrician gave us some drops to put in his nose to open the passages, it has not helped. We have an appointment on tomorrow to see if the drops have helped and to check his weight. What I need is some ammunition to make him take this as seriously as we think our baby’s condition is. can you help us?
My number is 770-595-7042
Or my email address above. They live way out in the country, so we do not have food service , but you can try to contact me by phone or email. Thanks so much
Grandmother in agony
Deborah Phillips
I have a daughter with Pierre robin sequence, I have been threw it all and am positive I can be off assistance. Please call or email me (806) 584-5001 God Bless I will be praying!!
hello, i was born with pierre robin syndrome and i have been through the operations etc so i know first hand.
Deborah,
My granddaughter was born 4 years ago with this malady. A doctor, Dr. Roy, in Jacksonville, FL is an excellent surgeon and I highly recommend him. Lily is doing fine now, although she needs speech therapy which is helping immensely. She has undergone 4 surgeries thus far and will have one again this fall to help with her speech problems.
My heart ached when she was born and I know the frustration you are feeling. All I can say is push, push, push for her to get the proper care.
Brenda Metz
Please feel free to email me.
My one month daughter is hsving Perrie robin syndrome
she is having all symptoms of PRS.( small lower jaw,
Breathing problem, cleft palate, natal teeth, backward
displacement of loeer jaw etc,)
Kindly suggest now where should I go for treatment
I am residing in india.
Hey Mrs. Brenda, My name is Christina I was also born with Pierre Robin Syndrome. It was difficult for me because of the PRS. Even though I had a lot of doctor appointments it got better I had amazing doctors and family to help me through difficult times. I’m now 19 going on 20 and I am finally living a normal life. I hope your child gets to have a normal life too. 🙂
I AM A CHILD THAT WAS BORN WITH PIERRE ROBIN SYNDROME AND CLEFT PALATEI DONT KNOW HOW OR WHY HE WAS BORN LIKE THIS BUT HE WAS WHEN HE WAS A WEEK OLD HE WENT IN FOR THE SURGURY OF PIEERE ROBIN AS SOON AS IT WAS DONE I STARTED TO NOTICE IN HIS FACE AND MORE AND MORE AS THE WEEKS WENT ON HE WAS 3 MONTHS WHEN THEY TOOK THE PINS OUT HE IS NOW 8 YEARS OLD AND HE IS FINE YOU CANT EVEN TELL ANYTHING WAS EVER WRONG HE TALKS AND DOES EVERYTHING LIKE ANY OTHER 8 YEAR OLD IF ANYONE HAS ANY QUESTIONS OR ANYTHING YOU CAN CALL ME AT 818-895-1812 OR EMAIL ME AT cmahan82@yahoo.com
THANK YOU ALL AND HAVE A NICE DAY
Hi, I have just read the comments on this website. My son was boring with pierre robin, he is now 4 years old. He has had 9 surgeries since he was 2days old. He had a trach put in,distractors in his jaws twice to move his jaw foward, cleft palate, I had to feed him from a feeding tube…etc. I can go on and on, and cry more and more as I thnk about all the things my baby Jamaal has bn thru he even stop breathing on me 3 times omg the scariest thng in the world. Any mother, grandmother, father goin thru this I send u all have my blessings and if u have any questions feel free to give me a call 859 270 2118. I will try my best to answer any questions.
I just give it up for y’all .my g.baby is 2mos and have the
characteristic of the small devastating disease.
But i call Jesus bc he can do it all but fail.and yes
we need all the support and i am willing to give
it back.his name is Malachi my son and his wife
are just so tore up on this.all blessing is a miracle
god will heal.trust me angel.please email me any
small thing as to help us as he get older and
healed.@leymonade63@gmail.com
live in Ga
There is a great support page on Facebook called “Pierre Robin Sequence Support.” If you or your family is affected by PRS, please search for the page or conact me kpjones85@hotmail.com and I will add you. My 4-month-old has PRS and I don’t know how I would have gotten through the last couple of months without them. They have guided me and given me all kinds of helpful advice along the way.
I am a 33 year old who was born with Pierre Robin. Throughout my years I have had numerous surgeries to correct various issues such as a cleft palate, tubes in ears, etc. I have undergone extensive speech therapy and orthodontic work. I will tell you that at no time in my life did I ever feel like anything but a normal person. I have grown into a professional with post graduate degrees,and I have 2 wonderful healthy children. I am appalled by the general feeling that all is lost in a child diagnosed with Pierre Robin. Please do not feel like there is anything wrong with a child born with this disease. All issues that are associated with this disease can be overcame with a little diligence and hard work with very little (at least remembered) pain. Do not despair and please remember that your child is capable of wonderful and great things regardless of Pierre Robin. Its merely a slight bump in the road.
I am a mother of a child w/ Pierre Robin sequence. When he was born it was very traumatic b/c he couldnt breathe. He was in the NICU for over 6 wks. Even after he came home, we had many scares that took us back to the hospital. He has had 8 surgeries in his 14 mo. Lifespan thus far, including a feeding tube and tracheostomy. We have home health care right now as well. But, he is a happy baby & I know that with time, therapy, surgeries, & prayer he will be doing just fine & independent in a few years! If anyone has any questions, please contact me via e-mail! I would love to listen!
I am a mother of a daughter that is 41 years old and she was born with pierre robin sydrome. On this day my neighbor and I have read the comments and we are feeling very sorry for the children you whining ove because you have their already lives so terrible and you have no idea. The one lady with 4mo that has a caregiver same on you. All of you sounds like to us is that you are more worried about you and you are feeling sorry about your self and are not thinking of the children. I do believe that you are also so embarrassed in public or what people may think or say and let me telling people stare. I have taken care of my daughter all of her life with little help from her father or other family members so I would suggest that you suck it up or put that baby in a home. I have been thru the surgeries and no I will not say how many and I have been thru the almost, so close calles to death and she is still with me. If you people would stop and think about the baby and not your selves and just love that baby and teach that baby as much as they could learn and then give a lot more, and at the end of the day you go to bed knowing that you did any and every that day to teach and love that baby well bless you and if not shame on you.
My e-mail is neighbalady@gmail.com
I too am a mother of a PRS baby. She is now 10 and a beam of sunshine in my life. She was born with a cleft palate and the hospital and pediatrician sent me home with a special bottle and that was it. On repeated followup visits I complained that her breathing was not right and she was bringing up most of her feedings. The doctor told me it was normal (she is my 3rd). Finally, the right person saw her having a breathing spell and we were sent to the local children’s hospital and and then the fun began. After numerous tests and attempts to help her, we ended up with a trach for airway and a G-tube for feeding, with lots of home nurses and therapy. She is great now undergoing orthodontic work. She had her cleft repaired as an infant. There are trials but they are worth it. My heart goes out to all of you, and praying God will hold your family in his arms as you go through this together!