I took the one less traveled by,
And that has made all the difference."
Am I in denial or enjoying the gift of experience?
I have been thinking a lot lately about the movement to build awareness to the serious medical sequelae due to premature births. This movement seems to be led by other parents of preemies as well as medical professionals. The sequelae, or following complications, are serious, sometimes deadly and more often then not effecting the child life long.
I was speaking to one Ellie’s doctors about how few physiatrists are out there and I said I thought there were going to be even more kids that need them because they are saving the preemies these days. And he said that actually the rate of disability has stayed the same and was not increasing as medicine was catching up with itself. What he meant by that is, for awhile doctors could save the preemies but would inadvertently, unknowingly, do things in that saving of them that would injure them for life that now they don’t do. Like how in the NICU they would give the babies oxygen to keep them from desaturating but then keep them on the oxygen while their blood oxygen level stayed at 100% for hours. The result of this was that the premature infant’s retinal vascular structure would grow like crazy hurting their vision to the point of blindness. Look at many of the preemies on the blogs and loads of them have thick coke bottle glasses for this very reason. This condition is called Retinopathy of Prematurity (ROP). There isn’t as much ROP anymore, even just 5 years later. Ellie does not have glasses because of ROP. Her vision is compromised by her hypotonia, which makes it difficult to keep her eye muscles still. We were lucky though because she didn’t have to be on Oxygen that much because she did not, have chronic lung disease that many of the preemies do.
But the doctor saying that the preemies were coming through it better was heartening to me. I wonder if medical science will keep pushing the envelope so that one day the viability age will decrease even more. I am not advocating for this one way or the other just wondering. I know that that viability rate moved from 27 weeks to 23 or 24 in the past. Ultimately I am still of the stance that it is the parents’ decision and that the doctors are responsible for a) giving them that choice and b) understanding themselves and then communicating the current data. Communicating trends would also be good because medical data with it’s limited populations from which they draw conclusions such that the numbers should definitely be put into context so that parents understand what is really known and what is a guess. And in the premature baby world there are still guesses, especially about outcomes.
I was speaking to one Ellie’s doctors about how few physiatrists are out there and I said I thought there were going to be even more kids that need them because they are saving the preemies these days. And he said that actually the rate of disability has stayed the same and was not increasing as medicine was catching up with itself. What he meant by that is, for awhile doctors could save the preemies but would inadvertently, unknowingly, do things in that saving of them that would injure them for life that now they don’t do. Like how in the NICU they would give the babies oxygen to keep them from desaturating but then keep them on the oxygen while their blood oxygen level stayed at 100% for hours. The result of this was that the premature infant’s retinal vascular structure would grow like crazy hurting their vision to the point of blindness. Look at many of the preemies on the blogs and loads of them have thick coke bottle glasses for this very reason. This condition is called Retinopathy of Prematurity (ROP). There isn’t as much ROP anymore, even just 5 years later. Ellie does not have glasses because of ROP. Her vision is compromised by her hypotonia, which makes it difficult to keep her eye muscles still. We were lucky though because she didn’t have to be on Oxygen that much because she did not, have chronic lung disease that many of the preemies do.
But the doctor saying that the preemies were coming through it better was heartening to me. I wonder if medical science will keep pushing the envelope so that one day the viability age will decrease even more. I am not advocating for this one way or the other just wondering. I know that that viability rate moved from 27 weeks to 23 or 24 in the past. Ultimately I am still of the stance that it is the parents’ decision and that the doctors are responsible for a) giving them that choice and b) understanding themselves and then communicating the current data. Communicating trends would also be good because medical data with it’s limited populations from which they draw conclusions such that the numbers should definitely be put into context so that parents understand what is really known and what is a guess. And in the premature baby world there are still guesses, especially about outcomes.
If the doctor that I had this conversation with is right then it seems that as medical science catches up with its experiments in saving the preemies the success rate is increasing. And that’s good. I am now five years away from the NICU experience. We met with Ellies pediatrician today for her five year check up and he was happy to get to see Ellie when she was not ill. He said it was obvious to him that Dave and I were doing a good job. That was great to hear from a doctor I really respect and knows what he is talking about because he runs the NICU at Brigham and Women's hospital in his spare time so he really knows where Ellie started. When he first took Ellie on, he was grave and straight faced and serious. I think he is pleased with her progress. I can't believe it has been five years. This visit, this accounting for where she is now, this weighing in and measuring, got me thinking about what success looks like. That is a quote from an old boss of mine in Organizational Effectiveness. He always used to ask the teams he was leading, “What does success look like?” Because teams always say they want to be successful. So it’s good to know it when you see it, right?
So what does success look like when it comes to saving a premature baby?
Well success most obviously might be the totally healthy child with no other obvious sign of the rough start than the oblong preemie face, which let's be honest is adorable. But could success also be the child that only has mild cp and can ambulate but is otherwise within the usual developmental ranges? Sure they will need assistive technology, possibly a wheelchair eventually or a cane or AFO’s. But is that tragedy?
Could success also be the child who is left quadriplegic, but not twisted and bent in his chair, and instead an example of what can happen when parents cope with this different and often difficult path extremely well with hope and constant vigilance over their child’s life? So that he then goes on to contribute thoughts and words to the world that enlighten us all? He can do this because his parents never treated him like he was disabled.
What about my Ellie? Is she a success simply because she is here and in one piece after her atrocious start? Is that enough? Is it correct to suggest that everything she is accomplishing is a success story or is it better stated that she is just like any other kid doing well at some things and not so well at others? Or am I denial to suggest that she is doing well at all? What if I admit she is different from other kids? What if I freely admit that I worry for her future? How do these worries really make me different from any other parent?
Was it something unique in my past that prepared me so well that today my main awareness is that I have this loving, funny, sweet, opinionated, beautiful little girl who lights up my world and warms my heart and soul every moment she breaths? Or am I just a sad sac in denial and if I had any sense would just focus on illustrating all that is wrong as a warning and help to other parents that they may avoid my horrible life? Hmmmm. Now that’s a tough one.
So what does success look like when it comes to saving a premature baby?
Well success most obviously might be the totally healthy child with no other obvious sign of the rough start than the oblong preemie face, which let's be honest is adorable. But could success also be the child that only has mild cp and can ambulate but is otherwise within the usual developmental ranges? Sure they will need assistive technology, possibly a wheelchair eventually or a cane or AFO’s. But is that tragedy?
Could success also be the child who is left quadriplegic, but not twisted and bent in his chair, and instead an example of what can happen when parents cope with this different and often difficult path extremely well with hope and constant vigilance over their child’s life? So that he then goes on to contribute thoughts and words to the world that enlighten us all? He can do this because his parents never treated him like he was disabled.
What about my Ellie? Is she a success simply because she is here and in one piece after her atrocious start? Is that enough? Is it correct to suggest that everything she is accomplishing is a success story or is it better stated that she is just like any other kid doing well at some things and not so well at others? Or am I denial to suggest that she is doing well at all? What if I admit she is different from other kids? What if I freely admit that I worry for her future? How do these worries really make me different from any other parent?
Was it something unique in my past that prepared me so well that today my main awareness is that I have this loving, funny, sweet, opinionated, beautiful little girl who lights up my world and warms my heart and soul every moment she breaths? Or am I just a sad sac in denial and if I had any sense would just focus on illustrating all that is wrong as a warning and help to other parents that they may avoid my horrible life? Hmmmm. Now that’s a tough one.
19 comments:
Kathryn,
I really liked this post. I was at the perinatologist's office the other day discussing the risks of conceiving another child, and she mentioned, in the nicest possible way, that Fletcher's birth was a "bad outcome." Which, I guess technically it was. 25 wkr, PVL, CP. I mean, even without the CP, giving birth at 25 wks is a bad pregnancy outcome.
But, at the same time, his PVL is very severe, and while he is pretty affected, is doing many things that his MRI probably says he shouldn't (thankfully the doctors have never once told me that he will never do x, generally they have been good about saying the MRI doesn't define the person). So is he a bad outcome or a success story? Can you be both at once? All I know is that labels aside, he is the joy of my life.
Erin
I've been wondering about similar sorts of issues lately, I've pretty much come to the conclusion that if the times when you cry are the same or fewer than the times you laugh and smile then that's success. I am a success. So is Ellie. So are you.
I think success is defined by the individual and about meeting one's maximum potential and finding their place in the world. Since Ellie is a very happy child who loves life I would consider her to be more successful than many, even those who may have more ability than her.
I'm pretty sure that success is whatever we want it to be. I am so proud of all that Charlie has accomplished, but I'm well-aware that it wouldn't be enough for some people. No big deal. We are defining success every day. This is a kid that had a less than five percent chance of living. His very being is success.
Some comments from a kid that grew up disabled (from birth-a "bad" outcome), which is obviously different than being a parent of a disabled child:
Although I can see on the outset of a birth with complications that it might be considered not a success or a bad outcome. After awhile (like say? after the initial stablization and grieving of the normal child shock wears off) it is not really very fun to be thought of as a "failure." I get that I was supposed to be born "normal" and that my parents did have to suffer through probably some grief and a lot of medical crap with me that I'm sure sucked. But I certainly reject the idea that after the initial acceptance of the complication, I (or any child) would have to go through their whole damned life being thought of as a failed outcome. The bad thing that happened, happened. Whether it be genetics, prematurity or whatever. At some point it is time to get over it and move on with what you've got. (BTW, I don't see you as doing this with Ellie at all, I just see this attitude from a lot of medical personnel and some families.) Like, for instance, I'm okay with parents donating time/money to whatever cause/research might cure others of the disease/complication their kid has...but you see some parents who have devoted their lives to the cause. Every word out of their mouth is about how X problem can be cured or corrected or prevented. That has to do a number on their kid's self esteem.
On the other hand, I'm going to take issue with your expression about the hypothetical parents who didn't treat their kid "as disabled." You might not have meant it this way, but a lot of people/parents like to say that they don't treat their kid as if they have a disability. Coming from a mom who did this very thing with me, I have to say, That is an extremely tough burden for a kid to bear. The sort of denial of disability this causes along with the expectations that you must do everything the able bodied way (and if you fail, it is your own internal problem for not sucking it up and succeeding in spite of your disability) is just a nasty, nasty state of mind to have to grow up with. Obviously, first and foremost the kid needs to be treated as an individual. But if the kid is disabled, then I think a very strong part of his or her chances for success in life (however defined) is that she has some concept of disability pride, and can objectively see disability prejudice. Otherwise, the kid is always going to think he is not cutting it or that there is something wrong with him when he is in fact being unfairly discriminated against.
The preemie issue is interesting in its implications. 24 weeks is sort of a cut off point in many states as far as late term abortions. I am pro choice, but I do think that if disability was more accepted as a whole throughout society, and preemies who may develop disabilities were not thought of as failed outcomes, parents would have an easier decision (and less biased) as far as what to do in those tough cases. But that is a whole nother can of worms.
Really thought provoking post, though.
AAah. It's late at night here. And I probably need to go back in the light of day and re-read your post. But Ellie is the biggest success of all. I refuse to believe any different. How can someone who has brought so much love and laughter be anything different.
Thanks to all for your thoughts on this. And of course I agree that Ellie is a success and the absolute love of my life.
Lisa- thanks for your insights especially. To clarify - when I said they didn't treat him like he was disabled I meant it more from the angle that they valued him and saw him for who he is - disability differences included. I agree - trying to make your non-able bodied kid able bodied in mind is a HuGE, awful, and damaging disconnect. And I am sorry that your mother did that to you. I think your point is well taken and well made and really important about seeing the kid for who they are and embracing that versus making them I believe the term I have heard on the blogs is a "super crip". I am going to get lambasted for that. But parents of able bodied kids do this too in trying to push their kid into begin what they want versus trying to get to know them and valuing who they are. I was in the hosptial alot as a kid and I was never so clear that it was a burden on my mother. I always felt bad about existing. I never want Ellie to feel that way.
In writing about the boy now man that is what I was trying to convey. As a parent you have a ton of filters placed their from your past then doctors then people's reactions to you and your situation. That is why I like to write just after I have been with Ellie in those quiet moments reflecting on how great the day was with her and all it's differences which mean nothing in context of the loving family we have and all the fun, laughter and joy we have together.
Emma - I loved your definition most of all. It's a great marker and I am happy to report we have way, WAY more laughs with ellie than tears and so does she. Thanks for that!
Kathryn,
you are not a sad sack, you are a resounding success as a person and as a mother.
I get so much inspiration and motivation out of reading your posts and I want to thank you and Ellie for them!
I would say that Ben is not a tragedy. I would also say that the moment he had a chance to move forward, he was a success. Do others look at Ben with longing, wishing that their child could do the things that Ben can do? Probably. Do still others look at Ben with pity? Thanking God that it was not their child who will have to fight through CP their entire life? Definitely. I can say probably to the first because I have heard the longing even if other mom's of special needs kid don't come right out and say it to me. I can say definitely to the second because people have admitted these things to me, with guilt in there eyes. Do I wish that Ben didn't have to deal with this, yes. But do I see him as a success, yes.
Anonymous - thanks so much! I don't really think I am too much of a sad sac in general but often the parents who are leading the, life with a preemie sucks charge, think parents like me, with a positive outlook and zest for life and are having fun raising their disabled kid, are in denial. They think I am a sad misguided deluded person who couldn't possibly happy and it's only a matter of time before I fess up and realize my life actually sucks. So you see I was being sarcastic. If you are come across those discussions and there are certain bloggers who specialize in them you will see what I mean. Just go on them and say, "but hey, this has been a great experience for me and I love my kid and think she is great just the way she is" and you can feel the proverbial eye roll!
But thanks for not thinking I am a sad sac, because in other areas of my life I certainly feel that way sometimes!
I remember I saw once a letter written by a mother of a child with a disability to a new mother of a child with the same disability. She wrote, "My heart is breaking for you, but I also know the joy that will come to you." I do truly believe that living this way makes me appreciate things so much more than I ever would have with a "normal" child. How amazing is it that he's even standing up on his own two legs? I don't see this amazement and appreciation in parents of "regular" kids. Never! I don't think my son is here to "teach me things," and I hate the whole "hero or victim" way people with disabilities are treated, but I have to admit, my son inspires me every day. Is he a success? I'd say he is a much bigger success than my friends' kids, who have spent their lives, what, playing in the backyard, while my son has faced life-threatening circumstances and come out of them smiling much more hugely than any of them.
I had a 'bad outcome' pregnancy. PTL with PROM at 24w. Carried until 29. Twin A had IVH. Twin B grower/feeder. At 15m follow-up we were told that Twin A had limited cognitive function.
I never placed any expectations, we just lived our lives day to day and offered any boosts we could (like early intervention).
FWIW, the docs were wrong. Twin A started reading, full books, at age 2. He's now 5, in kindergarten, reading at a 5th grade level, math at a 3rd or 4th grade level, sociable, affiable, well liked, etc...just like his sister, the grower and feeder.
We never said he couldn't, never said he 'had to'.
Anon
ps. we too loved preemie face, but both of my two outgrew it completely.
When I get frustrated and feel like I've been hitting my head against the wall with working with developements for Hannah. I look at a picture of Hannah in the NICU by my bed and realize that we have already come a long way.
I rejoice in the luxory that we now have a future to think about.
Not a sad sac at all - just someone who has a more positive spin on life. Nothing wrong with looking at life in the other way either - it's just a different perspective. It's the cup half empty vs. the cup half full deal. Ellie looks to be such a joyful child, why focus of what's wrong when there is obviously so much right?
Carol
As a Mom who has lived through the worst outcome- death- I can tell you that Ellie looks like nothing but a miracle to me!
And you are right- there are struggles and worries with any child.
Kathryn- you are the last person I would ever say was in denial!!
Lori,
Thanks for recognizing that. There was more than a little sarcasm buried in this post. I just hate all the judgements the parents in the glass is half empty side make about the ones who are not! I truly believe that Ellie and I are supposed to be here doing exactly what we do - love each other every day and teach each other. It's a miracle we are both here after what happened at her birth. That fact is always in the back of my mind and makes me grateful for every moment we have together as a family!
Kathryn- I know you know that. I hope you didn't think I was being pointed in my comment. I was just offering my agreement that when we try to weigh "outcomes" it becomes a slippery slope.
I try not to allow my thoughts to go to all of the "what ifs" anymore because it only becomes endless and self-defeating. Still, I know that whatever their challenges might have been- I would rather have my Joseph and Molly here with me. Naive? Maybe. But I can't help but think that those people who so easily assume that death would have been a better outcome for their child (and themselves) are a bit naive themselves.
Lori,
HI there. No - I was absolutely being sincere in saying thanks for saying that kind of way. I don't think I am in denial either - not really. But I hate that attitude that you have touched upon that death is better than a life that includes disability. I agree with you that life is worth everything. And I think it is horrible that someone made that choice for you.
Ellie has a great many differences and disabilities - but she has a lot of joy each day - every day. She, like Emma saw, has attitude in the best girl-power, I have things to do and say world kind of way!
No duplicity at all in my comment back to you - was meant to be a simple thanks - apologies if it came off as sarcastic.
By the way, the optic nerve is not what overgrows in Retinopathy of Prematurity. It is all about the retina. I have several links on my blog with information about it if you're curious. My son is totally blind from ROP and so we're well versed when it comes to this preemie disease.
Thanks for sharing your positive outlook on your life with your daughter. I, too, often find myself gushing about how much I love being Gavin's mom. It's a life I never would have signed up for, but one that I have gained immeasurable joy and knowledge from. It's a beautiful life despite disabilities and sometimes because of disabilities.
I'm also happy to hear others talk about "denial of disability". I am often counciled to concerning this. I don't think I should pretend my son is just like any other kid. That would be refusing to see who he really is. That would be denying everything he works so hard to overcome and compensate for. That would be dishonoring his past and quite honestly, I think a lot of who he is (that I love most) is due to these differences. For example, I LOVE how he pays attention to every little subtle sound or nuiance in life when I would ruh right by and not appreciate. And, also how he forces me to listen wholly, in new ways, because he is nonverbal. His sense of touch is amazing and he will place our hand on his face and then sweetly kiss it to say he loves you. Now, that's a truly successful, amazing life!
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