Preventing Aspiration of Children with Rare Diseases
After several hospital admissions for lung infection, RSV, and pneumonia; we asked the doctor, “What is going on? How can we help our daughter not always end up in the hospital?” As we gained information about her rare disease, we learned what she was susceptible for and why.
I am speaking from the perspective of a parent of a child with a rare disease known as AADC deficiency. This disease leaves children with extremely low muscle tone and autonomic dysfunction. This translates into having difficulty feeding, swallowing, and digesting. This combination means food, liquid, or even saliva can be aspirated into the lungs. However, aspiration affects many children – even those with typical development. Aspiration remains a significant cause of death in children for anatomic as well as developmental reasons.
By creating awareness and sharing tips, it our aim to help parents be better prepared and reduce hospital admissions.
What is aspiration?
- First, what is aspiration? This is what I asked myself when the doctor told me why our daughter required to be in pediatric ICU. Aspiration is when something enters the airway or lungs by accident. It may be food, liquid, or some other material. This can cause serious health problems, such as pneumonia.
The difference between aspiration and choking is that aspiration is when foreign objects are breathed into the lungs. Choking is when a foreign object blocks the airway.
A major complication of aspiration is harm to the lungs. When food, drink, or stomach contents make its way into your child’s lungs, it can damage the tissues there. The damage can sometimes be severe. Aspiration also increases the risk of pneumonia. This is an infection of the lungs that causes fluid to build up in the lungs. Pneumonia needs to be treated with antibiotics. In some cases, it may cause death.
Other possible complications from aspiration include:
Death is a major concern for parents in the AADC deficiency community. In a recent study, they conducted a survey, and the leading cause of death was pneumonia which stems from aspiration. The times when we came close to losing our daughter were always related to aspiration.
Our Experience with Aspiration
Prior to our daughter receiving a diagnosis, we were not too sure what was happening. After my wife and I learned our daughter had AADC deficiency, we began researching potential complications and issues we should note. Our doctor even alerted us to aspiration. Although we quickly learned a lot about aspiration and were diligent to prevent it, our daughter was still admitted to the pediatric ICU for five days due to a severe lung infection caused by aspiration.
We almost lost our daughter. So what went wrong? How did this happen? We were so careful during feedings, and provided only a liquid diet.
We didn’t realize that even though the feeding process might be over, digestion was not. Aspiration can happen during or after feeding. What we do as caregivers during feeding is just as important as what we do after it. Talking with our pediatrician, we learned two necessary steps to reduce future incidences.
Proper Posture During Feeding and 30-Minutes After
Feeding is a difficult process. It required a team effort and would easily take an hour. During feeding, made the most of the time by working on occupational therapy and speech therapy goals. For example, we would use our hands to make our daughter feed herself. As we helped her to bring the food to her mouth, we waited for her to initiate the feeding process by opening and closing her mouth. This helped her become more aware and improve her feeding too.
Many children are on a feeding tube due to the difficulty associated with feeding. By all means, do what ever it takes to make sure your child is well nourished. However, we were determined to keep our daughter off a feeding tube. We didn’t want to risk her choking, but we wanted her to one day gain the independence to feed herself.
Feeding is difficult for some children because it is a very complex process that happens involuntary. The entire digestive process relies on the coordination of several muscles that happens instinctively for typical children. However, hypotonia, or low muscle tone, affects the muscles necessary for problem-free digestion.
To help with proper posture during feeding, we invested in a comfortable highchair that came with as much support as possible. Despite being the best purchase we could find, we still needed to provide additional support with neck pillows and rolled-up towels.
Feeding was still tricky, though, and she didn’t enjoy it much. So, feeding we tried our best to enhance the experience with toys, videos, and making her happy. This was a balancing act. We wanted our daughter to enjoy the experience but if she laughed while eating it could be counter productive. Our strategy was to offer praise and positive reinforcement after each bite. If she refused, we would back off but not scold her.
An iPad and music was the trick worked the best. I remember my wife and I talking before our daughter was ever born during a date night. We saw a family eating. The parents were talking happily while their kids played with an iPad. We naively thought it was hands-off parenting. Today we know better.
When we were traveling or outside our home, supportive highchairs weren’t always available. Instead, we used a baby carrier that had a hip seat attached. I found this to be a practical baby carrier when going around the neighborhood, and it also worked out well for feedings. It was very affordable and one of the best devices – a must buy for all parents.
During feedings, I would put down the straps and hold her across the waist while Mom fed her. I used my chest to help keep her back upright, and between bites, we could take a tour around to keep her happy. Again, this requires two-person effort. Also, the straps must be down so if anything should happen during the feeding you can quickly address it (i.e. chocking).
Using the baby carrier was a great workout since feedings could easily take an hour. However, I understand that this is not the most practical way to feed. As Rylae-Ann got older, the hip seat became less of an option, but our supportive highchair remains today
Inclined Position While Lying Down
My wife and I were the most careful during feedings. After we were done, we kept our daughter upright, but eventually, we were drained from the feeding process. We would put her down and coo her to sleep. And here was the problem; she was completely flat. I believe this was the action that led to her hospitalization.
Once we had her back home after being discharged a week later, we had already upgraded her bed with memory foam wedges so she could lie in an inclined position. These are inexpensive and even offer a more comfortable sleeping position. Various heights and degrees of firmness are available, making it easy to adjust for different activities throughout the day.
While sleeping or resting, we kept Rylae-Ann propped up at a 45-degree angle by using a standard foam firmness. Ours had a top layer of gel, which provided the extra benefit of soothing her sweating. She would not go into this position until at least 30 minutes after eating. Some days she was exhausted, and we just let her sleep on our shoulders or use our bodies to keep her propped up.
We tried to keep Rylae-Ann in different positions throughout the day. We sometimes used a bouncer or a U-shaped pillow, which was Rylae-Ann’s favorite, while other times we put her in a standing position. Another helpful device was an adjustable mesh rocker. This kept her cool while staying in a 45-degree position. It could be rocked or locked into place. The supportive mesh netting also kept her from developing a flat spot on the back of her head. This foldable rocker came with us everywhere!
Reducing Hospitalization by Preventing Aspiration
Aspiration and lung infections in AADC children are serious complications with significant risk. They usually occur as a result of a child’s inability to digest food properly. Just because your child swallows their food successfully doesn’t mean the digestion process is complete.
Even if your child uses a feeding tube, you must still be aware that aspiration is still possible. Digestion is a complicated process that can be made easier, but we must remain vigilant.
Ensure your child is in a proper position when feeding and remains upright for at least 30 minutes. After feeding, they should stay in a 45-degree position to ensure the food does not come back up. Even a minor case of aspiration can lead to serious side effects. Aspiration can lead to lung infection and hospitalization, and can even be fatal.
If your child is experiencing coughing, shallow breathing, low blood oxygen levels, and a fever, this could indicate a lung infection. Our daughter appeared pale, was wheezing, and had a cough. We thought she was sick and didn’t even realize she had a collapsed infected lung from aspirating several days prior. Visit a doctor at the first signs of trouble or if you are unsure.
If you think your child has aspirated, seek medical attention as soon as possible. For our daughter we did not even know she aspirated. She seemed pale and was wheezing. She didn’t want to eat and had a slight fever.
Other signs and symptoms in a baby such as: