Cystic Encephalomalacia

[Heathermb8]

I have a 3 month old son who has been diagnosed with cystic encephalomalacia, seizure disorders,severe cerebral palsy,overlapping sutures, and reflux.He also has toubles breathing his chest concaves and is a very niosy breather but oxygen is fine.We have been told the fluid filled cyst are multiple and will progress. We were also told he will get to where he won't function and they expect him to live only weeks to months. They said he will stiffen up and wont be able to move.We were told all we can do is keep him comfortable as possible while he is here. He is breastfeeding and gaining weight,he is now trying to coo and has been smiling, his focusing on things is getting better,he has been moving his arms and kicking some. Unlike the doctors we are not ready to give up we are going to start therapy.They won't even give him immunization shots or a RSV shot, they are just more or less expecting him to die.We did have to sign DNR papers but we thought that was when he gets critical (not to not try to stop him from getting infections or viruses)We do not know the cause of all this. When I was pregnant they found cpc's but wouldn't do further testing and said there was no sense in worrying they would go away.My afp screenings were normal.I would like to have any input or information on this i can get. We are scared, confused and don't know where to go from here.We also would like to know if he will be in pain or suffer.Thank You Very Much!

[CCF-Neuro-M.D.-JT]

I am deeply sorry to hear about your son's story.  There are a number of pediatric neurological conditions that your son's clinical and neuro-imaging findings could possibly fit into, but certainly there is no one cause of his problems. (meaning it could be genetic, related to pregnancy abnormalities, a combination of multiple factors,etc...) I would have to personally examine him and look at his films before making any stab at a more definitive diagnosis to be fair to him and your family.

In my personal and professional opinion, I would not give up on this child either.  Of course, he's a special needs child who will need constant care and attention for the rest of his life which may very well be significantly less than a normal life span.  But as physicians, we can only give our best guesses as to how long someone has to live based on experience and the medical literature.  The meaning of DNR is confusing and different among the various states.  In Ohio, there are two kinds.  One is "DNR arrest" which means no heroic measures like CPR in the event of a life threatening situation.  "DNR comfort care" is usually reserved for patients whose death is imminent, such as an 80 year old man who had a large bleed in his brain with no hope for any meaningful recovery.  The family in that case will put him on comfort measures only such as IV morphine, with no treatment of infections or complications. You will have to talk to your docs about the exact meaning of your DNR (which by the way can always be reversible if the patient or their power of attorney/guardian changes their mind).

As far as pain and suffering go, like any child you'll have to look to your son for signs of fussiness and irritability as evidence of that.

The best thing you can do for your child is to find a good pediatrician or pediatric neurologist who will help you care for him.  The final decision for treatment (seizure control, airway protection, feeding, immunizations) is ultimately up to you.  I have personally seen parents who are completely dedicated to their child, trying to raise them as best as they can regardless of the horrible prognosis, congenital malformations, and numerous hospitalizations and complications they've endured.  Talk to you pediatrician about your concerns.

I truly wish you and your family the best of luck.

[eloridas]

I just started getting on this website, and very impressed by their open minded and heaartfelt answers-- Especially with the answer given to you by this doctor.  My son was born @ 32 weeks, with Cri-du-Chat Syndrome and had a large VSD, that caused severe congestive heart failure, I was also told that he would be mildly retarded.  At 26 days old, I was told he was also having severe seizures (Grand mal), the CT showed no gray matter could be detected, deaf, apnea, bradycardia, reflux, the list went on--the doctors though compationate, place a DNR on my son's chart also--I was told to take him home and enjoy him as much as possible.  They also told me that medicine is a science and that "practice" is what they are doing--that was their way of telling me "I dun no".  I found an excellent pediatrician (as this doctor suggests), who has backed me up--all the way (don't be afraid to sit your son's pediatrician down and tell him what you want for your child, because my son's pediatrician and I didn't always agree until I did--and if your not satisfied--find someone elso).  I'm a single mom and very quite person--never stuck up for myself.  The first thing I did, even before my son left the hospital, was to fine out about programs he would be qualified for in our area.  I found a program that a nurse would come into our home and show me infant massage--my son was very stiff, but with the program she set up for him helped him a great deal!  I always snapped pictures and kept cassette tapes running.  I've always been an optimist and was told to treat my son like any other baby--which I did!  He will be 6 years old tomorrow and I just put him on the bus for school.  I won't tell you there weren't alot of bumps (pot holes, bridges out, etc.) in the road, but from you know your child and that will prove to be a great help for your child's doctors.  Please keep me posted and if there are any "Mom" or parent questions (organizations, programs,etc.), don't hesitate contacting me.  God Bless!

[Heathermb8]

I just wanted to tell you that I greatly appreciate you responding to my question so quickly.  It was very helpful! More helpful than our own doctors have been.  I am not comfortable with our pediatrician but here in Murray Kentucky we only have two.But hopefully I can find one that will be more helpful to us and will help us to keep him from getting sick instead of saying "oh lets not keep him from getting him sick and let him die."I'm just not comfortable with that  Ecspecially since he is doing so good right now and not suffering.I am thankful you feel the way I do and say to not give up either.I might have to find one outside of our town.Thank you for being so caring and thoughtful! Your patients are very lucky to be under your care!
                     Thanks Again, Heather

[Babs 2]

Hi Heather, I read your story and can totally relate to you. I have a grandson the same age as your son. He has been diagnosed with severe encephalomalacia. (Both sides of his brain are severly damaged.) We have no idea when this damage could have happened, although we would not be surprised to find out that it was during delivery (he was stuck in the canal with his head wedged against her pelvic bone for 1 1/2 hrs waiting for the emergency crew to get there to deliver him.) The one thing that his pediatrician has never said is that he has little to no chance of survival. She has set him up with a terrific support group in our area for therapy because his muscle tone is very stiff. He has constant complex partial seizures. He was 6 months old on the 22nd and has just started cooing. He can sit up with assistance, however cannot sit by  himself. We were told by the neurologist that we shouldn't hold on to too much hope for him being like a normal child. Well, that may be so, but we still love him and God did bring him to us for a reason. His mother is only 19 years old and is in constant denial about his problems.  We are trying to get her into some type of therapy so that she can be of better help to her son. Yes our children may never be "normal", however with the right kind of assistance in therapy and all the love we can offer, they can be close. I just wanted to wish you and your son the best of luck. Never give up!  You can never love and cuddle these cute little babies enough!

[Lou386]

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