Dear Barbara, My child died at home of brain cancer. Fortunately—and unfortunately for us— our hospice didn’t have any experience with kids, who seemed to die very differently than adults. At one point, we were told she had hours. She lived four more weeks. She had the death rattle in her last few days. Nothing came out of her mouth, but she had such strong secretions, that we had one traumatic moment where I thought she would suffocate on them. She was conscious. I spoke to hospice on the phone, as well as the children’s hospital, and they were surprised to hear of this kind of difficulty. Another cancer mom advised me to ask for a suction machine. I did, and it sucked out thick mucus. It looked like yellow snot—nose or mouth. Someone postulated that perhaps she had gotten sick with a cold. Is that probably the case? Or were those secretions because of her impending death? I understand it’s hard to say—I’m just wondering if terminal secretions could manifest as thick mucus like that. Our hospice was confused by it, and that is why I am wondering.
In regards to your question about thick mucus in children at end of life: I also do not have much experience with children at the time of death. I can count on one hand the times I worked with children but here is what I think.
Our body is programmed to die, young or old, no matter the age, we all follow the same process if it is a gradual death versus a fast death. In a gradual death (disease or old age) the body begins following that process months before death even arrives.
The key to understanding the signs of approaching death is to know that nothing works in the normal way any more. The body is a battery losing its charge and is shutting down. The lungs, kidneys, heart, brain, even the mouth, eyes and nose do not function as they normally would.
About hospice telling you hours and then your child living another four weeks: There are signs that we look for that indicate a person who has entered the dying process has months, weeks, days, or hours to live BUT not everyone “plays by the rules,” not everyone follows all the signs.
One of the things I’ve observed is that sometimes we get to death's door, have all the signs of approaching death, and we stop. We are just not ready, there is still something to learn or there is something someone else still has to learn, and we pull back (for a limited time). What a gift you all had, an extra month with your child.
About the mucus, it saddens me to hear that another mother had to suggest a suction machine and not those that were supposed to have the knowledge and wherewithal to help (Also, why wasn't hospice there, in your home, helping you?). Back to mucus, I doubt it was a cold. Mucus comes in many forms as death approaches depending on hydration, dehydration, disease process, and positioning. Mucus is very much a part of the dying process. I see nothing out of the ordinary in your description.
I can think of nothing worse than losing a child. They are supposed to be our legacy, that part of us we leave behind when it is our turn to die. A universal law seems to be broken when a child dies. I am so sorry.
Something More... about Do Children Die Differently?
Taking care of someone who will not get better is different than caring for someone who will recover. Eating, hydration, pain medication, play their roles differently with the dying. To learn more read GONE FROM MY SIGHT: The Dying Experience. It also comes in two bundles, The End of Life Guideline Series and the more comprehensive Family Support Bundle.