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.
