Aspiration: breathing in a foreign object (such as sucking food into the airway).
As many parents of children with Cri du Chat Syndrome know aspiration is a difficult diagnosis no matter how common it is with this syndrome or any other for that matter.
With this syndrome many children suffer from gastroesophageal reflux, problems with sucking and or swallowing and larynx malformations. Sometimes it’s caused by one issue but many times it’s multiple issued combined.
The danger lies in “Aspiration Pneumonia”, an inflammation of the lungs and airways to the lungs (bronchial tubes) from breathing in foreign objects. Or in plain english a lung infection. As we all know pneumonia is dangerous in healthy adults imagine how disastrous it can be in a child. How about in a child with a compromised immune system? It’s a scary thought isn’t it. Well it’s a reality many special parents live with on a daily basis. Many children or adults require feeding tubes to keep the airways clear others have to have their liquids thickened. It can be a lifelong challenge, some get better over time and some do not. Every individual is different but precautions are necessary with each case.
Today I received confirmation that Sophie is in fact aspirating. She has been congested since birth, she has a persistent cough which I thought was from her asthma. She had a swallow study to rule out aspiration in the NICU which was normal. She was breastfed until she was 14 months old, and let me tell you breast milk is very thin. She has always been a very sickly child and I always wondered if she was aspirating. I look back now and I know I was too afraid to know the truth.
Since Sophie was 10 months old I have been hearing about the g-tube, going back and forth with the doctors who wanted her to have one but I kept refusing. Now it’s different. Now it’s about keeping her lungs clear now that I have proof that it can all change in an instant. Even with all her chronic infections we have managed to avoid pneumonia since her birth. This is my biggest fear by far, that she develops pneumonia. Her immune system is so weak and many of the antibiotics used to treat it no longer work from overexposure.
So, today my fear has become my reality. Our first step is to thicken all of her fluids, it’s so hard because water is her favorite drink in the whole world. Her speech therapist is also going to help me with positioning her better while she drinks. And we will await the doctors, the GI will surely push the tube. Last week I spoke with the pediatrician and she agreed if it’s minimal aspiration which it is at this point we will leave the tube for last resort.
Ironically this persistent cough that we can never get rid of is what they beleive has helped her. They say it’s moving around all that gunk and sometimes she even gets rid of it. It’s a blessing in disguise actually, it’s not sitting in her chest creating more bacteria if it’s being moved around.
I’m a firm believer that everything happens for a reason. As humans we become angry and frustrated when we cannot figure out the why of something. Today I am grateful for the unexpected blessings of a cough.
Quoting a friend, Thanks Barabara…. “I will never again take for granted drinking a nice refreshing glass of water”.