Most of us have heard of the pain of open heart surgery. Maybe you have known someone who has been through it. Maybe you have been through it yourself. The pain you're thinking of is the pain experienced after the surgery. Have you ever considered the pain you would endure if awake during the procedure with no pain management? The initial incision, breaking of the sternum, prying open of the rib cage. How would you respond if a doctor suggested that you go through the procedure in this way? You would think he's crazy!?!
Did you know that until 1985-1987, infant heart surgery was performed like this? No pain management, only a drug to paralyze the infant making it impossible to move a muscle or cry out in pain. Some say the reason was because it was thought babies don't feel pain, but I find it impossible to imagine that anyone ever believed that. http://www.math.missouri.edu/~rich/MGM/blog/chamberlain.html
According to one article I read, the parents of these infants were not made aware that the surgery was performed in this manner. As a mom, I can't imagine consenting if I did know or if that was my only option in order to save my child's life, what it would be like to experience knowing that your child had to endure such an inhumane procedure. If a person were to subject someone to this procedure outside of "surgery" it would be considered a heinous crime and that individual would likely spend the rest of their life in prison. But since it occurred in an operating room, with doctors who the parents trusted to save their child's life, I guess it's okay.
From what I have read, heart surgery is no longer performed in this way. I pray it isn't. However, infants still do not fair well when it comes to managing the pain of many procedures. A day after my son's delivery, my husband and I were still uncertain whether we wanted him to be circumcised. We asked how the area would be numbed and the doctor told us he doesn't use anything. "The procedure is so quick, it isn't worth the time to numb the area." Isn't worth it to who? This really angers me, hence my blog. I would like to use this blog to share pain management techniques I come across and hope others will share as well. Hope some of you find it helpful. Thanks for reading!
Some interesting resources:
http://pediatrics.aappublications.org/cgi/content/abstract/100/4/626
http://www.ama-cmeonline.com/pain_mgmt/printversion/ama_painmgmt_m6.pdf
http://pediatrics.aappublications.org/cgi/content/abstract/118/Supplement_2/S78
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Thank you for getting this information out there. I am sure there are many parents who are not aware of this. And i love the picture of Mommy and Child.
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Hi I think I found your blog through BBC. As a mother to a child that has had to have open heart surgery and will need more in her life time, I found the info in this post disturbing. My baby was prenatally diagnosed, while pregnant I would think about the things you mentioned and they broke my heart, although I knew pain medicine would be administered. I am a momma who had to watch her newborn baby pass through all kinds of tests, pokes, intubation, surgery etc. I have two older children and the most I had ever suffered pain wise with them was what you are talking about, vaccines and heal test. This changed my world and changed what I cry and complain about. My daughter is my hero. She is brave and because of her strength I can endure anything. Being a month in the NICU/PICU I could see that nurses and physicians are aware of the signs baby show for pain as mentioned in the article. Thank goodness times have changed and medicine has advanced, especially in the pediatric heart field. Congenital Heart Defects affects 1 in 100 babies. It is the #1 birth defect in the world. I agree with you that all moms should try to protect our children as much as we can always advocate for them. And although my daughter has been through so much you always find her smiling and happy at the world. I sometimes wonder if it was fair that we brought her into this world to suffer but when I see her smiling face, feel her warm embrace, and see her delighted look in her eye when she discovers something new, I know, that although she has had more pain than most of do in a lifetime, she is happy to have gotten the chance to live, love and be loved. Life is beautiful.
ReplyDeleteThank you for sharing your story Michelle. I'm sorry that your child has suffered. I'm also thankful that times have changed. Your child's happiness is a testament of your love for her. Through everything she has been through, she is still able to love life and in return she is showing you the beauty in life. That's a blessing. Best to you.
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