I hope it's okay that I'm posting this thread from a private Facebook group. I think this is a question we all want to ask, but don’t want to think about. I mean no disrespect by replacing the beautiful names of each child with “my son.”
What tends to be the cause of death for cCMV kiddos? In the short time I've been here [a member of this forum] there have been a few deaths and I'm curious if there's something I haven't been told by our docs?
RL: From what I can see, it's all over the board. Feeding difficulties, seizures, illnesses, bodies just plain shutting down. Sorry, I know that doesn't answer anything. Just remember that everyone is different, and our kids very often surprise us.
HK: Thanks RL. I appreciate it! If anyone has any other info I'd be interested in hearing it as well :-)
AE: Hi HK, Here's my take on it... and mine is 11yo now so I am definitely no expert. And I guess I look at it some from a nursing perspective. I think with most of the problems our kiddos have, the lungs tend to be the major area of concern for me. I’ve seen the lungs go bad in so many different situations... seizures, swallowing issues, etc. I guess the thing that scares me the most is how quickly their little lungs can go bad. I haven't looked at the stats in a long time, but the number one cause of death in children and adults with disabilities used to be aspiration pneumonia. Not sure what it is now. Nevertheless I am very strict about who feeds my son and I don't tolerate anyone that doesn't take safe feeding seriously. I am also vigilant about making sure I keep him up and moving, swimming, bike riding, whatever it takes to make sure his lungs don't get weak.
HK: That's helpful AE. Your explanation really helps bring what our doc said to something more meaningful. When we asked about prognosis, etc, he said it would depend on mobility and any other secondary issues. I hadn't connected all the dots in my mind until your explanation, so thank you.
We struggle with feeding issues. My son is g-tube dependent. He is now 9 months old and doesn't take any liquids by mouth, not for lack of trying on our part, but because little man can't figure it out. He had a severe bout of RSV back at 6 weeks old as well and has been having repeated upper respiratory problems recently. I've heard that the RSV alone can take a toll on the lungs in a healthy child, so I'm getting nervous about this winter and how he will do.
AE: Don't get nervous HK... I tried it for a while and it doesn't help at all. Just think about it like this... The lungs are meant to be upright for the larger part of the day. Even if your son is not very mobile (you won't really know until he does or doesn't meet milestones), there are lots of ways to keep him moving, even if it just means carrying him upright. We were blessed in that our son was able to hold his head up fairly well by the time he was a couple years old so we started putting him in a walker (just a regular baby walker) which kept him upright, forced him to gain trunk control, and also put pressure on his legs which is very important for normal leg length and strength. We also scheduled MBS studies so that I could be the one feeding him and tried many different positions to see which was least risky for swallowing issues or aspiration. For many years, a reclining position worked the best for him and we kept our study results close by because every nurse you will ever meet will insist that children must sit up in order to swallow safely... don't ever, ever let someone that doesn't understand your child's individual needs dictate the care he gets. You know your child best and don't let anyone ever tell you any differently. Safe feeding can only be determined by MBS done with you in the driver’s seat. Another thing that I want to say to you is this (with reference to winter). Cold weather has never ever been the cause of an infection. Infection is caused by bacteria, virus, or other type of bug. Now with that being said... the weather can make a difference in whether or not a bug can survive. Heat and humidity makes for a much better growth medium for bugs. Embrace the cold winter months... Check out the statistics.... people from northern colder states actually live longer than those nuts like me who hang out with mosquitoes and snakes and such. My best advice for you though is to cherish every moment and have fun with your son. I spent several years waiting for the shoe to drop and at some point I realized I was wasting precious time and just made myself start doing "fun stuff" instead. I know I will one day lose him, but I'm determined to make the very most of the time we have, no matter how long that might be. He is my joy and I truly believe that God sent him to me because I was exactly what he needed and he was exactly what I needed. We are a team. Others may not understand us, but we understand each other and that is what matters most.
HK: That was beautiful :-)
DB: Hi HK, I asked Dr. Stuart Adler, a pediatric CMV expert, this question. He told me that CMV per se does not lower life expectancy; it is the resulting conditions that would affect that. So, a child with cerebral palsy, or respiratory issues, or whatever other health issues, would be subject to the risks associated with those specific conditions. I hope that helps!
HK: Thanks DB, it does help!
LM: Hi HK. My son passed away in 2010 because of respiratory failure. As he got bigger, he could no longer cope with the demands of his body because of the severe neurological damage. I am also sure that his epilepsy had an impact. Winters were also scary times for us. The trick, and it is one of the lessons we learnt, is don’t think too far ahead, especially in the early days as it can seem so daunting. Take it day by day and things will "normalize" in the sense that you will become more used to dealing with your special man’s needs. As I am sure he is already doing, he will surprise you in so many ways and bring you joy in ways you never thought. Don’t get too scared about what has happened with other kids, each are unique. Always here to chat, Lots of love xxxx
HK: Thank you LM! I am sorry to hear about your sons passing. I look at my son when he is not fighting off any of the infections or viruses and he seems so healthy; but when he gets sick, he gets it so much harder than his sisters. He has had a month of back to back illnesses now and woke up wheezing this morning similar to when he had RSV and we almost lost him. It sure is hard to try to lead as normal a life as possible but balance that with trying to keep little man healthy.
Appreciate your sharing! Thanks!