Beyond Achondroplasia

Growing together with Clara


In a very simple way, the respiratory steps are: inhalation and exhalation. The inhalation brings in fresh air, enriched with oxygen. It occurs due to the difference of pressure inside and outside the thorax. The air flows inside because the air pressure is lower in the lungs. And for the exhalation it must be use the respiratory muscles and the pressure rise inside. Air from the lungs (high pressure) then flows out of the airways to the outside air (low pressure). The cycle then repeats with each breath.

Continuous Positive Airway Pressure or CPAP is applied through a nasal (or facial mask) while  sleep and is the most common and effective nonsurgical treatment for sleep apnea. The CPAP device creates an air flow pressure that is strong enough to keep the airway passages open. That means that it can launch air into the airway even if an apnea occurs. Before having the CPAP as treatment, is necessary to do a polysomngraphy (sleep study).

If the test diagnoses obstructive sleep apnea, then the CPAP is recommended. Then, a second polysomnography is scheduled to test if the person can be fitted for a mask and CPAP device.  The level of air pressure will be adjusted during the study to eliminate the airway obstruction. Clara´s CPAP is programmed for a  12 cm H2O pressure. The device pressure range is from 4 to 20 cm H2O.

I wanted to experience what Clara goes through every time she uses the CPAP and is very hard to manage to keep the mask with “all that air coming in”. UAU.  I can call it a radical experience. And once again, I just tried the 12 cm H2O, that is a lot!!! The trick is not to think about the air flows and relax. Really relax.  That is why it works when she is asleep.


Clara´s CPAP device

The problem that come out was the type of mask. The mask on the left side of the next photo, was the first mask she wore. It had a lot of leakage and the air reached her eyes. Our pneumologist said that some children using these masks get conjunctivitis and some can get blind. The air flow is very cold and can dry the eye conjuntiva.

At 3 months old, trying her first CPAP mask at the hospital. She slept from exhaustion after fighting so much with the forced air

At 3 months old, trying her first CPAP mask at the hospital. She slept from exhaustion after fighting so much with the forced air


While she was sleeping during the night. I stayed with her all along but my husband had to sleep in the car… Clara slept 8 hours without waking up. She was so tired…

The pneumologist also told us that most masks can produce facial deformation in children if they started wearing it from early days.  I was afraid of that specially because the mask she wore that had lots of leakage, and because of that, had to be very tight. After 8 hours of use, when I removed the mask, she had marks and some deformation in her nose and forehead. Oh no!… after some soft facial massage and cream, and tears, she recovered her face. I called the technician that brought the mask into the hospital for Clara, and begged for her to find a proper mask. She had to do more. To do better. And she did. Four days later, we received the bubble mask. I´m very thankful that she wears a mask that doesn´t do her any warm. Every child needing a mask for apnea, deserves de best. So having access to a bubble mask is crucial.


All the masks she had to try. The 3rd, transparent, is the bubble mask that she wears

Bubble mask. Very thin but effective

Bubble mask. Very thin but effective


This is the cap she uses when she wears the mask in her sleep

And for more security during the night, we have a pulse oximeter at home too. It works every night while Clara sleeps. So we have two devices working. The pulse oximeter monitors the level of oxygen in the blood and heartbeat. When the oxygen level drops bellow 90% or the heartbeat gets under 70 bpm, the device gives an alarm. And then we wake up. At that moment, I place the CPAP mask if she is no wearing it already or I replace the mask in the correct position. Some times, with her movement, it gets out from her nostrils.


Our pulse oximeter


Sensor wire that connects her left foot with the pulse oximeter


Her cute foot! with the sensor placed with a proper adhesive

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