"Thought of the Month, September 2013: I often wish that doctors and other professionals would take a few moments to consider the impact the diagnosis and prognosis they are about to give will have on the parents of a child with special needs, and choose their words more carefully. Some parents will react to the news that their child is unlikely to achieve very much by becoming determined to prove everyone wrong but others may feel that even trying to encourage the child's development will be pointless. Also, any prediction of future levels of ability should be prefaced by the words "in my opinion" because at the end of the day that's all it is - the truth is that nobody knows what the child might achieve given the right help and opportunities. I'm by no means advocating that a glowing picture of the future should be painted, but don't kill off hope without so much as a second thought - you will probably forget the words you used as soon as the next family walks in but the parents who are leaving your office will remember them for years to come!"
I could have very well written that thought of the month myself... and have likely shared that very thought, with my own personalized spin, before.
I won't speak for other families, but I will say that most families have experienced the same discouragement during diagnosis and presentation of prognosis as we faced...
Brayden was diagnosed with a terminal brain malformation at my 24-25 week ultrasound and we were instantly advised to terminate... in fact we were always advised to terminate and we learned to not look forward to joy-filled prenatal visits, but instead learned how to make our way through each appointment without letting the doctors tear us down in to uncontrollable bouts filled with hopeless tears (which I failed miserably at, nearly every time... yes, that was me sitting in front of the University of Missouri-Columbia hospital bawling my eyes out every month from March 2008-June 2008).
That's right, apparently I have friends, family and even have run in to some total strangers online and in person who have been given the power to judge whether another's life is worth living... not only that, they can tell from an ultrasound image or a cute baby face that there is suffering... amazing, isn't it??
When Brayden defied those first odds and survived to term, he wasn't supposed to survive to leave the hospital. When he did survive a couple of days during my own recovery, we were then offered the opportunity to sign him over to the hospital to live his final days so that we didn't become "too attached". (As if carrying him in my womb for 37 weeks and 5 days did not create a bond like no other bond).
Needless to say, we brought Brayden home and we loved him, as his sister Ady has said,
And we did, we loved him and we fought for him like no other!
Against "all-knowing" doctors who advised us so many times that what we were fighting for was pointless, that we would not change the inevitable (his death, likely within the first year since that's what the medical textbooks say). Our purpose wasn't to change the inevitable, but to encourage the possibilities that existed along with the inevitable.
Four years, four months, and fifteen days later the inevitable did happen on November 15 2012. It happened unexpectedly, not that there is ever any way to prepare, but there were several instances that it would've been a little more expected. While it was and is still an incredibly sad, unfathomable to overcome, life-altering experience... we still "believe in the impossible!" and continue to encourage others to do the same, because even though the end is sad it would've been sadder had the "in-between" stuff never happened!
~The inevitable did not happen in the womb as the doctors swore would happen.
~The inevitable did not happen days after birth as the doctors swore would happen.
~The inevitable did not happen when he had his shunt placed, which we had to fight for because the doctors said the risk of him dying was greater than it helping him, when he was one month old as the doctors advised would happen.
~The inevitable did not happen when he was crying as an infant, which most infants do, and the doctors told us he was in pain and to give him high doses of morphine to keep him comfortable in his "final" days.
~The inevitable did not happen when he got a cold and the doctors said that was a sign of his body shutting down... every.single.time. during his lifetime.
~The inevitable did not happen when he had one of his few surgeries to improve his quality of life as the doctors told us to be prepared for as a possibility.
~The inevitable did not even happen when I was preparing for it to during his final hospitalization with aspiration pneumonia and toxic shock, when for once the doctors advised that he would be okay but that it would be scary to get to the light at the end of the tunnel. (the doctors and nurses at Naval Medical Center Portsmouth in Virginia are no less than amazing, by the way!)
The inevitable did happen, but it was when his time here was complete... not when the doctors predicted or advised. And doctors should not present a child's diagnosis as a cookie-cutter mold of what is to come, but should instead say:
"Your child has ___(fill in the blank)________ and it means that ____(fill in the definition of said diagnosis)________. I could lie and say that I know exactly what this means for your child, but I will be honest and tell you that I do not know for sure. Instead I will guide you along the way. I will direct you to doctors who will support and encourage you and the decisions you will be forced to make, regardless of how scary and overwhelming they will seem. I will help you get the community support you need to give your child the best quality of life possible at home with his/her family. But I will unfortunately not be able to do is to predict your child's lifespan or the challenges that they will face. Instead, I will recommend for you to allow your child every opportunity to define their own life and ask that you allow them to define their diagnosis while you advocate for and fight for their right to receive the care that any other child would receive, because that is what doctors vow when they take the hippocratic oath."
Hippocratic Oath?? What is this oath?
Hippocratic Oath (Modern version)
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
*This version was written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.