1. Protect the Airway
The number-one priority when it comes to treating Pierre Robin syndrome is protecting your child's airway. The jaw or the tongue or both can obstruct the airway. If your newborn with Pierre Robin syndrome is having trouble breathing, a nasal breathing tube can be inserted into his airway. In moderate cases, intubation may be used to keep the airway open. The most severe cases may call for a tracheostomy. A tracheostomy is an opening surgically cut into the windpipe. A tracheostomy tube is then inserted in the opening. If your child has a problem with tongue retraction, common in Pierre Robin syndrome, a tongue-lip adhesion surgery (glossopexy) might be recommended to prevent his tongue from blocking his airway. This is a controversial procedure that involves temporarily suturing the tongue to the lower lip to keep it from falling into the back of the mouth.
2. Correct the Cleft Soft Palate
The only treatment for the facial and oral malformations caused by Pierre Robin syndrome is surgery. The first surgery your baby will likely receive is corrective surgery on her cleft soft palate. This surgery is usually performed between 9 and 18 months. During this surgery, tissue from the mouth is used to fill in the hole in the palate. It usually requires 2 to 3 days of recovery in the hospital. Depending on the severity of the cleft and skill of the surgeon, this surgery may be refined to help with speech later on in early childhood.
3. Surgical Extension of the Jawbone
In most cases of Pierre Robin syndrome, the jaw will grow enough to catch up with the rest of the face within a few years. For moderate-to-severe cases, in which the jaw is so small that it blocks the airway, a procedure called mandibular bone expansion may be necessary. In this procedure, an expansion device is fixed to the child's jawbone and regularly turned to extend the bone. This usually takes about 4 or 5 weeks. The device is left in place for about 8 weeks, however, so the bone can heal. If your child has a tracheostomy, it can usually be removed after a successful mandibular bone expansion.
