I began this post after thinking more about the current discussion and am finishing it at the hospital while Ellie naps. Her head is wrapped in gauze, underneath which are an array of metal pieces glued to her scalp. She just completed a night long EEG. She was having some neurological symptoms and her pediatrician sent us to the ER. The EEG was to try to catch these symptoms to determine if they were seizures or not. Not much luck but we are still waiting to hear the results of the EEG reading. The good news is her shunt is working fine – thank god.
In light of the discussion about hope and facts, here’s a story. Our roommates in the hospital are a father and his former 28.2 weeker who had a grade 4 IVH leading to hydrocephalus and in the course of events she contracted a devastating meningitis during a hospital stay. She is in surgery as I write this for a shunt revision. Her father is here and hands on and great with her. We were swapping stories. He lives out of state and said that when she was born his daughter’s pedi there released her from the hospital and his care saying she was not worth treating. So he and his wife and family drove to Boston and went to the ER here and that is how they got her cared for. I try not to swear on my blog – but WTF?! Their local doctor said it was against his ethics to treat their daughter. There is a law nicknamed the born alive law that makes this illegal - I think. I read that on the comments of a recent post in the preemie experiment. I will add the link in soon. It’s never simple is it?
Someone who recently found Ryn Tales did so through a search entitled hope and preemies. Yikes. It led me to a post from a mother of a 25 weeker who is two now and, per mother’s report, totally caught up. She said that hope sustained her through that experience. I believe her. Hope sustained me too after the shock wore off.
That post got me thinking about the amount of hope available to parents during a traumatic, unexpectedly early birth of a child followed by a prolonged NICU experience. In all honesty I want to clarify some things that may not be apparent from some of my comments on other blogs and from this blog. Though I meant every word in those comments and in my posts here I have not taken the time to detail our whole experience so that people reading our story would know the context of it all. I don’t know that at the moment I care to document here what happened in sequence. I have to tell that story so often to new doctors we encounter who take clinical notes while I tell the tale of how my baby’s universe was torn asunder and she fell into an abyss that she is still struggling to get out of. It’s painful. Retelling requires a certain amount of reliving, which is best to keep at a minimum. I am actually not that strong of a person. I don’t think I could do it all again.
That said, I don’t want to take away the hope of parents who might have found this blog from some NICU parent room while they are frantically searching to make sense of things and get up to speed on this new world they have entered. So here is some clarification for those of you who might have stumbled into my little universe.
I want to make it clear that the doctors in the NICU Ellie was born in were either neutral or doom and gloom – especially in the early days. They did not want us to have false hope. And for that I am glad. Having spent 133 days in the NICU I can also tell you there are phases to that experience ranging from shock and adrenaline to denial to acceptance and more shock and adrenaline thrown in for good measure every time something scary happens like a surgery or NEC or many of the other horrors preemies face in their NICU course.
During our NICU experience I, being at the very end of my Ph.D. program in organizational psychology, which included a good measure of social statistics, noticed a startling lack of statistical facts regarding outcomes of preemies. Dave and I went in search of them on our own but what I found was very disappointing in terms of statistical power. We read some in the neuro texts we bought, but being a psychologist trained in social statistics I was so UNIMPRESSED by the lack of power there. It seems a lot of neurology regarding preemies with brain bleeds is based on only several instances (sample sizes as low as 4). That was also 4 years ago. Hopefully the latest additions of the texts contain better info.
In the NICU we also participated in a study on cerebral spinal fluid to detect PVL by the same neuro doc who re-injured Ellie’s brain. We participated in the study because we felt if we didn’t they would hold it against us and not treat Ellie as well as possible. That is how desperate you get in the NICU and how close your child it to death. When the study results came back the doctors – this was two months in – urged us to sign a DNR. This would have meant that we let Ellie drown in her own secretions. We were horrified. I also believe that the neurosurgeon there wrote Ellie off and on some unconscious level gave her sub par care in the form of not checking ALL her ventricle to see if the shunt was working – which it wasn’t. Then to fix it he did an experimental surgery that only served to injure her brain more so that now her eyes and vision were affected. When he gave me the results of the study I read the statistics and could easily argue that they were very weak.
My point in bringing this up is I wish we had heard more substantial facts in the NICU. We heard a lot of speculation to the negative from the doctors though the really good docs did admit to not knowing. The “I don’t know” comments actually gave me the most hope and I so totally to this day appreciate their honesty. I thought, hey if they don’t know, I will just have to hope for the best. Which I did and still do as that is also my job as Ellie’s mother. If I don’t believe in her and set the bar high, who will? This is not to say I don’t realistically deal with her where she is at and love her for who she is. But at the end of the day I believe in her and have hope for her.
Lastly here are some different types of Hope:
Gut level knowing hope: This is great when it comes though is prone to second guessing by the mind. It’s your inner intuition letting you know to have hope and that you will be able deal with the outcome. Please do not confuse this with that profoundly different cliché that states “you are never given more than you can handle” which I think is total bullshit. If that were the case you wouldn’t hear those horror stories of mother’s killing their children.
Hope from denial: it’s not realistic but keeps you from cracking up during times of great stress. When it comes from within it’s a survival mechanism important to maintaining your psyche. But like all the phases of grief you need to pass through it. I have noticed the grief cycle has many little cycles along the way especially in a life with a child with multiple disabilities. It’s not like you face denial once and have done with it. No, I have faced it over and over with every new understanding of Ellie’s issues. For Ellie’s sake I have to make myself move through the, “No she does not have seizures. No, she’s not a seizure kid.” To fuck sake, she’s got seizures let’s figure out how to deal with them the best way possible. Sorry for the swearing, but it was a long night. It’s never static just like cerebral palsy is not static. (It’s not degenerative but it does change it’s presentation especially when a child grows. Nothing static about that.)
So to the doctors who told us, “well at least it won’t get worse” that is totally not true. Sometimes it does get worse and there are new difficult things to deal with all the time.
False hope: This is the worst especially if doctors do it. It’s a major error and only sets you up to deal with the pain of reality at a later date and make mistakes in the present.
Write you off hope: This sucks too. It’s when someone tells you something positive to avoid telling you something negative or to avoid dealing with you at all. When Ellie was born I can’t tell you the number of people, some I thought were friends, who told me, “oh, I know a preemie and they are fine. She’ll be just fine.” And then you never hear from them again, because you see they are immersed in the preemie myth and don’t need to worry about you anymore.
Realistic hope in light of the facts: This is the best and what I tried to create for myself during the NICU course and now in my day to day. I then temper the difficult facts I learn with a wait and see attitude to keep my sanity. I want to be aware of the all the things Ellie is facing so I can help her. “Watch the baby!” Is what my favorite NICU doc told us. Thanks for that one D. I still am, and she is beautiful.
We had a ton of very competent help in the NICU. The majority of the doctors were excellent, there were many amazing nurses and therapists who became part of our little family and we met some of the most courageous and admirable parents who have now become life long friends. I felt too that sometimes the doctors come to adore some families and babies and want good things to happen to them. This is the human condition. I’d take a doc like that any day over the docs who wanted us to sign the DNR.
I don’t think it is for the doctors or the state to say who should be saved or not. I think it is the parent’s choice. The problem comes in when parents don’t have adequate information to make informed choices. This murkey ethical pool is further convoluted by prevailing preemie myths which also add great pressure and difficulty on parents who need make life and death choices for their child especially if the choice is to let the baby pass away.