Will my baby have trouble breathing?

Many infants with Pierre Robin sequence have trouble breathing because the airway is blocked by the tongue. Breathing problems can be mild or severe. An infant born with a cleft palate and a small chin should be checked very carefully for breathing trouble. Breathing problems are not always obvious. Your doctor can do special tests to check if there are breathing problems.

Signs of airway obstruction show up at birth or in the first few weeks of life. The first sign is often rapid breathing. The breathing problem often gets worse after the first on or two weeks. The baby’s breathing may then sound like “noisy breathing,” snoring or stridor (a high-pitched noise) when the baby breathes in. Another sign of airway obstruction is turning blue (cyanosis).

Your baby is more likely to have trouble breathing when he is lying on his back or sitting in a car seat or infant seat. This is because the tongue may fall back and block the back of the throat. He may also have trouble when he is awake, eating, sleeping or crying.

If you see your baby turn blue, or if you hear noisy breathing (such as a snorting or choking sound) when you baby is on his back, turn him onto his stomach immediately. This will help the tongue fall forward and open the airway. If your baby has trouble breathing when he is on his back, he will need to lie on his stomach all the time, even when you change his diaper or give him a bath.

The airway is so relaxed during sleep that your baby’s tongue can fall back to the airway. Snoring, restlessness, sweating and irritability may be signs of breathing trouble, and you should report them to your doctor right away. Some babies with Pierre Robin sequence can even stop breathing some of the time when they sleep. This is called obstructive sleep apnea. Babies without breathing problems should sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS). Babies with Pierre Robin sequence, however, SHOULD NOT sleep on their backs, because of their airway problems. Most babies with Pierre Robin sequence should sleep on their stomachs or their sides. If your baby has obstructive sleep apnea, your doctor may recommend use of a cardiac apnea monitor.

If the doctor says that your baby should not sleep on his back, make sure the the baby sleeps on a firm mattress in his own crib. Do not use fluffy blankets or comforters. Do not let the baby sleep on a pillow, waterbed or sheepskin, and remove crib bumper pads. Also, keep your baby away from cigarette smoke. All these things can cause breathing difficulties for any baby.

You may also hear your baby having trouble breathing when he is in his car seat. Your doctor should order a breathing study to be done while your baby is in his car seat, to be sure he will be able to breathe well sitting up in the seat. Your doctor may say you should use a special care bed instead of a car seat. Car beds let your baby travel lying on his stomach, so the tongue can fall forward and help the airway stay open. If your baby has a home cardiac apnea monitor, it should also be used during travel. You should use a card bed that meets federal motor vehicle safety standards, just like regular baby care safety seats.

Most babies with Pierre Robin sequence outgrow their breathing problems by the time they are six to eight months old. This is because the jaw grows quickly and moves the tongue away from the back of the throat. The baby also learns to control the tongue as he grows. Some babies get better more slowly than others, and these infants may need more tests and more treatment than other babies.

In the first weeks and months of life your baby may need special help with his breathing and eating. A team of doctors, nurses and other health care specialists can provide the care needed to help your baby do well. If your baby shows any signs of airway problems or has a very small chin, your doctor should do tests to find out if your baby is having breathing problems.

What tests are used to check my baby’s airway?

If your baby shows any signs of airway blockage, your doctor may need to do tests to find out if your baby needs special treatment. A sleep study (polysomnogram) is done to check your baby’s breathing pattern, heart rate, oxygen level in the blood (oxygen saturation), and carbon dioxide levels. Your baby will be studies while he is awake, asleep, eating and probably in his car seat. Sleep studies should be done in a pediatric sleep lab and read by people with pediatric experience.

Doctors will decide if special treatment is need for your baby. The tests may have to be done more than once in your baby’s first weeks of life, to find out if your baby is having any new breathing problems. This is because breathing problems sometimes get worse in the first 12-16 weeks of life. Often the tests have to be done in the hospital, so the doctors can watch your baby closely and decide the best way to care for him.

How are my baby’s breathing problems treated?

The sleep study may show that your baby just needs to sleep on his stomach to help him breathe. At home, most babies will need a machine called a cardiac apnea monitor, also called an apnea monitor. This will check your baby’s heart rate and breathing constantly. The machine will alert you if the baby’s heart rate is too fast or too slow, or if he stops moving his chest to breathe (apnea). If the doctor says your baby needs the monitor, you will be taught how to use it and what to do to help your baby if there is a problem.

If the sleep study shows your baby does not have enough oxygen in his blood, the doctor may decide to treat him with oxygen at home for a while.

If the airway obstruction is very serious, some babies while in the hospital may need extra treatment for the obstruction. Sometimes a tube is temporarily put into your baby’s nose (nasophayngeal intubation) or through his mouth (endotracheal intubation).

Some babies need an operation to help them breathe better. If needed, your surgeon will decide which operation is best for your baby. One kind of operation is called mandibular distraction osteogenesis. In surgery, distraction devises are attached to the lower jaw bone on each side of the face. A screw is turned daily to increase the distance. This makes the jaw bone grow longer. Moving the lower jaw gradually forward will help move the tongue forward also making the baby’s airway larger. Sleep studies will help the surgeon know when the screws no longer need to be turned and the devices can be surgically removed. It usually takes the jaw around three to four weeks to reach the desired length and then another six to eight weeks for the jaw to heal completely.

Rarely, a doctor has to make a small hole in the front of your baby’s neck, so he can put a tube directly in the airway; this is called a tracheostomy.

It is important to remember that a baby with Pierre Robin sequence will always have an airway that is smaller than normal. Your baby may have an airway obstruction again when the palate is closed, if he gets enlarged tonsils and adenoids, or if he becomes very overweight. As your baby gets older, be sure to tell your doctor if your baby has breathing problems, such as snoring, sweating or restlessness, especially during sleep.