How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Saturday, February 13, 2010
Why It Hurts So Bad
Grief is such a screwed up thing! I will think I have worked through so much of it and then it just comes back out of nowhere and knocks me to the ground. I have tried hard not to point fingers on this blog and to not tell how Anna's story came to be from my point of view but because of what happened yesterday I will no longer be silent. I must continue to fight for her. We had found a law firm and filed a claim on Anna's behalf but we cannot move forward anymore. It isn't because the doctor didn't screw up but because he didn't screw up one big time. He screwed up a bunch of little times. I know that makes no sense, but keep reading and it eventually will. In a case that is trying to prove when and how a neurological injury occurred there must be a clear cut defining moment that shows exactly when in time the brain damage occurred and that if someone had intervened at that time then the brain injury would have been prevented. In our case, there was not one defining moment. There were instead many moments, any of which could have been the cause, but no clear cut thing to show exactly when the damage occurred. The law firm and expert both believe Anna should have been delivered earlier and that earlier delivery would have sparred her brain. But instead of a quick decline while not tolerating the hostile environment in my womb, she was just slowly withering away in there while fighting to survive. She never had a "really really" bad non-stress test or a "really really" bad biophysical profile. What she did have was, by ultrasound, a slowly growing body. A body whose stomach just kept getting smaller and smaller on the percentage chart because her body was trying its best to shunt blood flow to her brain so that it would keep growing and in turn her abdominal growth slowed way down. She went within a couple of weeks from 50% in abdominal circumference to less than 10%. I was referred to a Maternal Fetal Medicine specialist early in my pregnancy due to my taking an antidepressant but when things got bad in my pregnancy I was not ever referred back to her. I had a family practice physician who thought he could handle my case and never realized he was way out of his league. I was sick and so was my baby and he was not equipped to handle it. He never ordered Doppler scans to see how the blood flow to Anna was. On the morning of my amniocentesis that I had to basically beg for (at 38 weeks) which was being performed by another Dr. (with whom I have no problem and so wish I could go back and switch to her) it was found that there was hardly any amniotic fluid left. She said I needed to be delivered immediately. My doctor, nope, he asked the nurses if it was convenient for them to deliver me that day or if would be better for them to wait until the next day. After Anna was born she was, according to the nurses notes time and time again "dusky, lethargic, grunting..." but she was never placed on oxygen and her distress was never addressed. Then when at 4 months of age we were sent to a GI because Anna wasn't gaining weight we were told by that GI that he felt the problem was neurologic in origin. The same Dr. that had delivered me just kept saying he just couldn't see it, that my baby was fine. Turned out the GI was right. Then the final blow came when I tried to talk to the doctor about how I felt about what he had done and where I felt he had failed me and failed my daughter. I tried to explain that he has been able to move on and doesn't have to ever think again about what happened but that we are daily left to deal with the damage to our daughter's brain. His response..."Shit Happens." This lawsuit was never about money. We will be OK financially. We may struggle sometimes but we will be OK. We will find ways to provide what Anna needs and we do not need a Dr's money to do that. What this lawsuit was about was forcing someone to take responsibility for the pain they have caused. Every night when we put Anna to bed and hook her up to a feeding pump I am reminded that this was preventable. Every Wednesday when Anna has speech I am reminded that this was preventable. With every milestone that is missed I am reminded that this was preventable. With every pill that I have to give Anna every night for sleep and reflux and motility problems I am reminded that this was preventable. Every time I have to take Anna to a Dr's appointment I am reminded that this was preventable. I am mad and my heart hurts. Although Anna is happy she is having to go through things she should not have ever had to deal with. She is having to do these things because someone thought they were smart enough to deal with something they had no business messing around with. I had hoped that holding him legally responsible would somehow make it better but once again he is able to slither his way out of having to take responsibility for anything. So I am left to find some way to make peace with this but for now I can't and I don't even want to. I am just mad and sad and hurt that my baby has a brain injury that could have been prevented and the person responsible will never even have the balls to say "I'm sorry."
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We are in a very similar place. I have no good advice, but I do have to say that I finally just had to stop thinking about it--the mistakes--because every time I do, I feel a horrible sensation and that's no way to live.
ReplyDeleteI had a really difficult time over Christmas break visiting with my family and all the nieces and nephews who are Nate's age and typically developing. When we're isolated at home, Nathan is just Nathan but when we were with the family, his delays were so much more noticable.
ReplyDeleteAt about that time too we were having discussions with our attorney about details of Nathan's case. Because of complications during the pregnancy like two bladder infections that "may have gone systemic" our case was weakened. (Silly me, I thought a systemic bladder infection might produce a fever or something more significant than urinary frequency.) I was so angered by the suggestions that protein in my urine on a couple of catches would overshadow the fact that I went to the hospital with a torn placenta and they sent me home. Never mind that the pediatric neurologist said it was clear the damage occured within days before or the day of Nathan's birth.
The attorney basically said we needed to pay for a second opinion to get the case rolling again. I talked to my current OB and he said the attorney's free "expert", a L&D nurse, wasn't really qualified to say whether or not we have a case. I'm positive that a second opinion will shed light on many missteps. We just need to find the $2000 get the answers we need.
But I'm rambling and the point I want to make is that I understand your anger. Sometimes I feel that Nathan's triumphs are more evidence of a terrible mauling. I screamed at the midwives that there was a bear about ready to attack my child and they ignored me. I watched helplessly as my son's brain was damaged and everyday I have a constant reminder of the fact.
I find that when I think about pursuing litigation, the anger gets overwhelming. My thoughts are consumed with building a case against the hospital and midwives and defending myself and the pregnancy. I'm not sure I can handle the anger over the years it takes to pursue a malpractice case. Like Katy says, it's really no way to live. I'm know I need to make peace somehow and at sometime whether or not I pursue this case.
Anyway, there has been so much chat on the cpmoms yahoo group that it has been on my mind too. Take care, and sorry about my vent.
HELLO! Parallel universe here! We didnt have a defining moment, just lots of missteps & all kinds of denial. Need to share my story with you, one day soon!
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