18 month old possible Chiari

[calinden44]

My daughter passed away at 18 months from a fall where she it her head, front part of left side. She had a subdural hematoma, which they fixed, and while waiting for her BP to come back up, to my horror, they could not get it to return. We were completely unaware there was anything wrong with her as her pediatrician had sent her for a CT scan at 9 months due to a rapid growth in her head circumference. the result was benign hydrocephalus, bilateral enlargement of the subarachnoid space. They told us it would resolve by age 2, and not to be hyper or follow up as it would just miraculously go away. It was the numebr one children's hospital in Texas, so I listened like an idiot.
When she hit her head while trying to walk, they believed she seized and that the subdural hematoma was intensified by the enlargement of the subarachnoid space. Her autopsy showed, fatty filum terminale, syringomyelia, tethered cord, and a large central cavity, also chronic subdural hematoma, chronic subdural hygroma.
I spoke later with the neurosurgeon who operated on her and he said that her fall should not have caused such an injury and that her preexisitng condition was her ultimate downfall. Preexisting condition?? I was floored. I asked about a Chiari malformation, and he said there could have been a slight one, and if he had followed up with her 3 months after the first CT then he would have been able to help her more efficiently in the ER.
Do you believe that the doctors should have caught this?? Are there symptoms I should have seen?
She was a preemie due to me having HELLP syndrome, but made a full recovery with no lingering ailments. She had been scanned, tested, poked and prodded in the hospital for 2 months after birth, and no mention of spina bifida or any other head or back malformations. She had a slight grade one hemorrage in her brain, but it reabsorbed within a week.  Could some of the baove conditions have been caused by a traumatic birth?? I had an emergency c-section, and it was quite bad.
She was not walking fully by herself at 18 months ( 15 months uncorrected), but we were told this is just a delay preemies have. I took her to a geneticist b/c of the head size (even though my pediatrician told me it was uneccessary and she had a full genetic profile done in the hospital when born - all perfect) But, the not walking and head size worried me immensely. She also had torticollis at 6-8 months which resolved, and I was told this was b/c preemies were less mobile and more stiff from their birth, and since it resolved we were ok.
DO all of these symptoms above have a relation to the probelms they found after she passed, and do you think any of the numerous doctors we saw should have put these clues together and sent us for further testing?? Did they use the preemie excuse to cover all of these problems? Should someone have cared enough to clue it together?
I do not know if these problems are congenital, from traumatic birth, or specific to my angel. I just know no doctor wants to deal with a grieving mother b/c they only think you are out to sue, and not to understand WHY your baby is gone.
I cannot find peace until I know if I missed some large sign that could have saved her.
I am pregnant again now, and am worried that there are thigns i should be looking for. The preinatologist I see says he will cover all bases, but doctors have let me down so miserably, I am afraid they will kill this baby too.
Please help me with any information or answers you may have.
Thank you.
calinden44

[chadry]

I am so sorry for your loss. My heart just goes out to you.
My daughter has chiairi and she is 13 now. This was diagnosed a few years ago.
When my step son and his wife were having a baby I went with them for their ultrasounds and I made sure everytime that they checked for Chiari. The girls doing the ultrasounds were very nice about it and had no problems meassuring where everything was. I just felt that if they could check that right away and know from the beginning if everything is in it's proper place that it would be best for the baby. He is fine but I am glad that I made them check. You could also ask to have this checked before the baby is born. Maybe they will do more ultra sounds with you just to make sure that the baby is developing correctly. They can do so much with these tests. I would insist that they do them more frequently with you. My daughter in law had them done on a monthly basis because of problems in the past and losing 3 babies. Our first grandson was premature but he only lived an hour. I thank God all the time for him. We held him and kissed him and loved him so much in that short amount of time and I can still see his beautiful face in my mind and heart. He was only expected to live a few minutes but he stayed with us for an hour.
I pray everything will go smoothly for you and that everything is OK with this baby. Take care of yourself. I know how it is to worry when you are pregnant.
Our prayers are with you.
Chadry

[selmaS]

My deepset sympathies.

First let me say, I am 49 am was dx'd last Feb with chiari which I have since birth. I have had issues all my life and none of the drs found the chiari until I fell and had to have surgery.
Today I told my parents....I resisted because of their age and health. I also didn't want them to feel like u do that they missed something.....

Most with chiari do not present symptoms until later in life......I do not believe that. I believe that we do present, but attribute it to something else.Chiari symptoms cycle....they come and go...each time adding something new.....it is not until a fall....stress...or an accident that causes the dormant chiari to become active.
When it does it can be very slow moving or can grow so quickly that perm damage can occur.

My mother would place me in the crib on alternating sides to avoid a flat head. Every time  she came in to get me I was on my left looking right.....my head was getting flat.
She questioned the dr and he said" don't worry , she's a girl her hair will hide it"
and my mother forgot all about it. To this day I can not sleep on my right looking left, it hurts.

U have knowledge of this to help ur next child.....and u know to find a chiari specialist if u should need one.If u want u can have ur child evailuated by a specialist to look for this condition.

Chiari is congenital....the reason I could only sleep looking right is because I had some bones that fused in my neck.

The reason the drs did not find the chiari when ur daughter was still in the hospital is because she did not have spina bifida or a condition that is readily visable.Chiari I is new on the radar and as someone with it I know how difficult it is to find a dr that knows ne thing about it, If they do, it is outdated info.This is y u want to find a specialist they r the only ones that r experienced and dedicated to helping those aflicted with this and related conditions.

There is a possibility that ur next child may have this also, but there is a chance that it will no happen.

Try and relax....and if u want we can send u some drs names....I do not have ne first hand knowledge of drs in TX. Dr Oro is in CO...and I do know about him.

I believe there is no way u could have known or prevented this tragedy.

I pray ur unborn child is born healthy and free of ne malformations or conditions.

Godspeed
"selma"