Pierre Robin Syndrome / Sequence.

Now, not many people really know of Pierre Robin Syndrome, as it is pretty rare. 1 in 8,000 - 30,000 people worldwide are affected. 

It comes in different severities, mild, moderate and severe. I have a severe case. 

Below is taken from CLAPA (Cleft Lip and Palate Association) so you can gain a brief understanding.

The Features of Pierre Robin Syndrome - Also known as Sequence are:

Small Lower Jaw

A baby with PRS will have a jaw which is noticeably smaller and more receded than those of other babies. This is called ‘mandibular hypoplasia’ or ‘micrognathia’.

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.

Breathing difficulties

The smaller lower jaw means the baby’s tongue will be further back than usual. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing difficulties. This is called ‘glossoptosis’. 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.

Cleft Palate

A cleft palate (or a high arched palate without a cleft) may be present, and this can affect children in different ways. 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. A 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. If you are under the care of a Cleft Team, this will happen automatically in the clinic. Otherwise, you will need to ask to see an ENT consultant or audiologist.

Here I am, above. With my mini jaw, Tracheostomy, NG Tube and questionable bonnet.