These babies can usually go home shortly after birth. Some have no problems with breathing and only minor feeding difficulties. Most children with Pierre Robin Sequence grow up normally, even if they start their lives with quite severe problems.Īll babies with Pierre Robin Sequence will have some difficulties, but these will vary from child to child. Jessica at one day old in the Special Care Baby Unit (SCBU) What does this mean for my child? It can be hard to diagnose PRS because of this. PRS can be a part of other syndromes/conditions which have genetic links, such as Stickler Syndrome. The key thing to remember is that, much like a cleft lip and/or palate, it’s very unlikely to happen just because of something a parent did or didn’t do. A ‘contributing factor’ increases the chance of something happening, it’s not the whole cause, and in most cases there will several contributing factors. Research has looked into contracting a virus during pregnancy and folic acid deficiency as possible contributing factors, but nothing is known for sure. It happens very early on in pregnancy, but we don’t know for sure why it happens. These issues can happen by themselves or be seen together. In the case of Pierre Robin Sequence, the main feature is a small lower jaw (‘mandibular hypoplasia’ or ‘micrognathia’), which leads to the tongue being more likely to fall backwards and obstruct the airways, which can then stop the palate from closing properly (causing a cleft palate). In both a ‘ sequence‘ and a ‘ syndrome‘, different symptoms and issues are grouped together into one condition, but with syndromes these issues don’t occur one after the other in the same way. How does it happen?Ī ‘ sequence’ is when a single issue in development results in a chain of other issues. Estimates range from 1 in 8,000 to 30,000 worldwide, and in the UK statistics put it at 1 in 14,500 babies, or just under 50 babies per year.Īround 50-80% of these babies have other associated conditions, with the most common being Stickler Syndrome. Indy’s daughter, Eva-Rose, was born with a cleft palate and PRS How common is it? Otherwise, you will need to ask to see an ENT consultant or audiologist. If you are under the care of a Cleft Team, this will happen automatically in the clinic. Babies with a cleft palate often have issues with milk coming down their nose during bottle feeding, but this gets better as a feeding pattern is established, the child grows, and the palate is repaired.Ī cleft palate (whether or not the child has Pierre Robin Sequence) can also cause hearing difficulties, so it’s important for your child’s hearing to be tested regularly. Cleft PalateĪ cleft palate (or a high arched palate without a cleft) may be present, and this can affect children in diffierent ways. Breathing difficulties can be very difficult to manage and cause a lot of concern, so it’s important the baby is under the care (or at least under the supervision) of a specialist hospital. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing difficulties. The smaller lower jaw means the baby’s tongue will be further back than usual. The smaller jaw is thought to be the cause of the other features of PRS, but because the jawbone continues to grow as children get older, it usually doesn’t need to be treated surgically.Ī baby with a cleft palate and a nasogastric feeding tube Below are three babies with this feature. This is called ‘mandibular hypoplasia’ or ‘micrognathia’. The main features of PRS are as follows: Small Lower JawĪ baby with PRS will have a jaw which is noticeably smaller and more receded than those of other babies. In medicine, a ‘sequence’ is when a number of issues occur in a particular order due to a single cause. It is also occasionally called Pierre Robin Syndrome. Pierre Robin Sequence (PRS) is named after a French physician who identified the main features of the condition in the early 20th Century. If there is anything you think is missing from this page, please let us know in the comments.
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