Down syndrome and Obstructive Sleep Apnea

Obstructive sleep apnea is a common problem with Down syndrome, and one we are fully aware of in my house.

Healthline.com defines obstructive sleep apnea (OSA) as a, "Condition in which breathing stops involuntarily for brief periods of time during sleep. Normally, air flows smoothly from the mouth and nose into the lungs at all times. Periods when breathing stops are called apnea or apneic episodes. In OSA, the normal flow of air is repeatedly stopped throughout the night. The flow of air stops because airway space in the area of the throat is too narrow."

Individuals with Down syndrome have low muscle tone, which means the muscles in the mouth and upper airway are more floppy. An enlarged tongue and smaller airways all also factors for these individuals when it comes to sleep apnea. For this reason, sleep studies are often recommended for individuals with Down syndrome, especially if there are any concerns. You can learn more about this topic on the NDSS website.  

Here's our story:

Jaycee was diagnosed with obstructive sleep apnea when she was 3 years. At the time, her cardiologist was concerned that her pulmonary pressures were higher than expected. This could have been caused by her congenital heart defects or obstructive sleep apnea. A sleep study was then performed to make sure further heart testing would not be needed. That first sleep study was not fun, but that story is for another time.

Jaycee was diagnosed with OSA after that first sleep study. Her tonsils and adenoids were huge, so the diagnosis was no big surprise. She underwent surgery to remove the tissue. A sleep study was repeated weeks after the surgery to make sure her OSA was "treated" with the removal of her tonsils and adenoids. To my surprise, she still had OSA.

Jaycee hooked up for a sleep study

When she was 3 years, 10 months old, we started trying c-pap with Jaycee. She is now 10 years old and has progressed to needing a bi-pap. Today, Jaycee tolerates her mask and machine well. But, it was a very long road to get to this point. It took trying multiple masks, changing from c-pap to bi-pap, and simple maturation to get her to wear her mask and keep it on all night long. I feel for any family who is trying to get their small child to tolerate wearing a c-pap. It is very challenging!

With Jaycee wearing this mask for 7 years now, it has become our norm. She treats her mask and hose almost like a teddy bear; it is just a part of her nighttime routine. That being said, the bi-pap has created some issues in Jaycee's life.

Here's a few ways OSA and bi-pap use has impacted us:

-There are no spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person who has let her spend the night.

-When you travel overnight, you have to pack the machine up in a little bag. You also have to make sure you have distilled water to put into it if you use a humidifier.

-What about date nights for the parents? Well, the date must end early before your child goes to sleep unless your sitter is trained on the machine. This is the reason why my husband and I mostly have lunch or afternoon dates, which are still quite rare.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. You have to help your child get her mask on. Jaycee goes to sleep much faster now. When she younger though, I would sometimes be waiting her out for an hour to get her mask on properly. I'm glad those days are behind us.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls. We have always put Jaycee's bi-pap in a drawer of some sort to keep it contained and secure. In hotels, we generally put in on a chair and stack pillows around the machine to keep it from crashing into the floor when she moves all over the bed at night.

Jaycee's bi-pap secure in a drawer

-You have to clean the parts weekly and remember when it's time to reorder new parts. That's a job that falls to me.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information. I can't remember the numbers, so I keep this on her health history sheet that stays in my purse.


Obstructive sleep apnea is something that many families must deal with, ours included. Some adjustments must be made, but thankfully there are treatments to help with this condition. Every parent with a child with Down syndrome needs to understand the risk factors, signs of OSA, and discuss any concerns they have with their doctor.


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

When Jaycee's Tonsils Came Out

Whenever someone tells me their child is getting their tonsils taken out, I cringe. If they ask, I tell them our story.

Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"

She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.

Sure enough, she had obstructive sleep apnea.

Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.

Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.

The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication. 

About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.

We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.

We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.

And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.

When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.

Sleeping Beauty & her Bi-pap

Since 2009, Jaycee's obstructive sleep apnea has been treated with a c-pap or a bi-pap machine. People with Down syndrome are more at risk for sleep apnea due to their smaller airways and low muscle tone. Usually with children, removing tonsils and adenoids fixes the problem. Jaycee did have this procedure but her apnea persisted. I'm not sure how many young children with Down syndrome use bi-pap machines to treat sleep apnea. I personally do not know of any. Jaycee started using hers at age 3.

For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!

I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.

Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!

One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:

It just so happens my mother-in-law picked out the perfect bed for Jaycee without her even knowing it. She got this bed pre-sleep apnea but it's worked out great. The bed has drawers underneath it. We put her machine the drawer and she can flop around all she wants without turning the machine over. I forgot to tell my parents about this during Jaycee's last sleep over at their house. When they checked on her, her machine was upside down. Fortunately, the water did not escape and ruin the machine. This is something we have to think about when we are away from home.

Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!

A Sleep Study

No, Jaycee did not fall into a pile of wires. This is a picture of her all hooked up for her yearly sleep study.  Jaycee has obstructive sleep apnea, which is common with individuals with Down syndrome.

Her apnea was discovered around age 3. Her enlarged tonsils and adenoids were taken out in an attempt to fix her apnea. However, it still remained. That's when we entered the fabulous world of c-paps and bi-paps. She wears these machines at night to help force air in to keep her airway open. Getting her to wear her c-pap and bi-pap masks has been a challenge at times. Maybe I'll get into all of that in another post.

Every year, Jaycee gets a sleep study done to determine if her bi-pap machine needs to be adjusted and if her apnea is better/worse. Sunday night we made our way to the hospital for her sleep study. We drove most of the way over to the hospital earlier in the day in order to keep her awake for the study. I took her shopping and had a fun afternoon out. I have learned that getting her a little more tired than usual helps the study go easier.

When we check in at the hospital at 7:30, Jaycee is excited to get into the bed and watch tv. She is familiar with this place now, but her first sleep study (when she was under age 2) did not go this smoothly. I get her pjs on and I feel out a large stack of papers. They contain lots of questions: Does she have a tv in her room? Does she sweat during her sleep? Does she sleep walk? Does she have nightmares? What are her medications?

Then the sleep technician comes in to start the hook up. There are several electrodes glued in her hair. She gets things placed on her leg, around her chest, and face. There is stuff everywhere it seems. They measure all kinds of things: snoring, leg movements, brain activity, oxygen saturation, etc. There is a lot to these tests! I have to hold Jaycee's arms down a few times, but overall she does ok with the hook up. This process takes about 30-45 minutes. Jaycee is tired after all of this. It's time for bed. She falls asleep really quick, which means I did a good job of wearing her out. After she falls asleep, a nasal cannula is put on. It annoys Jaycee. I have to sleep with her for the next 2 hours holding her arms down so she won't rip it off. Halfway through the test, the tech put Jaycee's bi-pap mask on. The doctors will later compare all of her numbers looking at no support and with bi-pap support to see how she did.

Morning comes and it's time to unhook. This process if faster. After several hair washings over several days, the glue will be completely out. Jaycee did great and is ready to start the day. I, on the other hand, am exhausted. I spend the rest of the day on the couch.

Look at all the wires. How can anyone sleep with that on?

In a few weeks, we'll get a phone call which will tell us the results. Hopefully we'll get a good report and we won't have to see the sleep lab for awhile!