Tuesday, 10 March 2009
-
Currently
Handle with Care: A Novel
By Jodi Picoult
see relatedShe did it again!
For those of you that have never read Jodi Picoult; she has this amazing gift. She can take a wonderfully woven story and make you think you have it all figured out until the last paragraph of the book and then WHAM; she throws you for a curve that you never saw coming.
I won't spoil the ending for those that are planning on reading the book, but I want to touch on something from the book. Until I began to read it; I had never heard the term "wrongful birth". I have heard wrongful death many times and even watched my mother go through a case of that shortly after my step fathers death. What exactly did wrongful birth mean?
Well, it seems it is an actual term and has been used a few times when a parent feels that they were not given adequate information prior to a child being born with some disability. The question lies in; had they known prior to coming to term, would they have continued with the pregnancy or would they have terminated? As you can imagine, this opens up a whole big set of moral questions. Where is the line drawn? Who determines what life has value and which ones are expendable? Does the diagnosis of Down syndrome or CP mean that the child will have an empty life and be more of a burden than a child born "normal"?
I can and have answered the Down syndrome question many times. Emily's life has value and I wouldn't have changed a single thing even if she had been diagnosed in utero. She has never been a burden to us, nor have we ever looked at her and seen anything but "normal".
So, how do you guys feel about someone suing for "wrongful birth"? I don't mean in terms of gross negligence. For example; a woman has been told that her child is too large to proceed through the birth canal prior to going into labor and yet the doctor refuses to perform a c-section. The perfectly healthy child suddenly is born with profound health issues due to the doctors negligence. In a case such as that; a parent suing for future expenses for her child is not only reasonable, it is totally necessary. I mean more along the lines of say; missing the fact that your child only had three chambers to her heart as opposed to four. Your child was going to require surgery to fix the chambers either way; would you feel that the doctor somehow didn't prepare you for the problems and therefore should be held accountable? Would you instead look at it as; she is my child, she is here, I love her and there is no such thing as a wrongful birth?
Okay, so I totally used Emily's heart condition as an example, but only because she is the only child I know first hand that had something like that happen.
I really want some honest feedback on this. I had never heard the term before and would love to hear how you guys feel.
Oh, and if you haven't read the book; run don't walk to the nearest bookstore and pick it up. Handle with Care, by Jodi Picoult.
-
recommend
- recs 0
-
share
-
email
- sent 0
Post a Comment
- Back to gwacemom's Momaroo Site!
- Note: your comment will appear in gwacemom's local time zone: GMT -08:00 (Pacific Standard - US, Canada)
Comments (19)
Haha. I'm glad I wasn't the only one who was reading the book thinking I had it all figured out and then BAM! (as usual, like you said.) I hope people read this and try to see it for more than just a story. It's a great one. I'm glad you enjoyed reading it! <3
I had never heard wrongful birth before either. I find it somewhat offensive. Our knowledge and medicine has come a long way in the last 20 years. So things like sever cases of spina bifida are far less common. In some sever cases (of any disease) I can see how it would be much more painful to give birth when the outcome is most certainly death. Some of these things (that are no longer common) can be detected with modern ultrasounds and are guaranteed death. But other things, such as Emily's heart condition, no longer mean death. Children that are born with some problems can be healed and live a normal life. I cant see that as a wrongful birth. I can understand why someone would be scared at just about any disease/syndrome diagnosis. I do believe in the right to choose to give birth or to abort (even though I am strongly pro-life). But to say it is a wrongful birth because the child is not perfect the way it was expected is definitely a kick in the gut. So 'wrongful birth' definitely angers me.
I do agree with your example of a woman needing a c-section but being denied is a good reason to sue. But I wouldnt label that wrongful birth - it would be more along the lines of negligence.
I think I am going to stop there before this turns into a whole book of an angry rant...
Ok - so I cant leave it alone. Its things like this that really bother me. Specifically:
“Jade is the best thing that could have ever happened to us, I mean she's our foundation, she's our rock. But if we had known, I didn't have an option,” says Cynthia, who would have had an abortion if she knew about Jade’s condition.
How do you go from saying that she is the best thing that ever happened to saying that you wish you never had her?
later in the article, this so perfectly describes Pennsylvania... and NJ... (perhaps Jim will have to deliver our babies when we decide to have them.)
“I think they are. I think what's happened is physicians now are held to a level that perhaps many people could not see in their own life, they're basically held to perfection,” says Shwayder.
And that standard, according to the American College of Obstetricians and Gynecologists, is a major problem for doctors. They currently list twelve states where malpractice suits have caused insurance premiums to increase so much that they threaten to drive obstetricians out of business.
and since abortion was legalized in 1973:
It's estimated that thousands of wrongful birth lawsuits have been filed since 1973, and there are no restrictions on the birth defect for which parents can sue.
I promise I am done now. It makes me too angry...
@der_lila_Stern@xanga - Please don't apologize, this was exactly what I was looking for. I had seriously never heard of wrongful birth suits until I read that book. Too much Nick Jr. not enough 60 minutes. To learn that one of the two leading causes of the suits is Down syndrome just blows my mind.
I can honestly say that I was angry that Em's heart defect was not found duing that infamous ultrasound, but I wasn't angry at the tech. I was more upset that this happens all of the time and it is because the techs are not being properly trained to look for these types of issues. More funding needs to be alloted for pediatric heart defects research, but that is a whole other rant. I can also say with no doubt whatsoever; knowing her heart had an issue would not have changed the outcome. I would have just spent that entire time freaking out.
Thanks for sharing that story; I had not read it before.
Now I have to read that book, it sounds really interesting. I don't really understand how people could sue for "wrongful birth". That's awful. I don't believe there's any such thing as a "wrongful birth". Every child is a gift, not matter their challenges, mental or physical!
@Luv2BMama@xanga - It is a very thought provoking read. I highly suggest it.
I agree totally, but it is always is amazing that others don't see it that way. I can remember following Em's birth very well meaning friends and family tell us how sorry they were. Matt and I would immediately say; we aren't sorry at all, she is beautiful. They didn't mean anything by it, but it still was hurtful. Thankfully, Emily has made them all see the light and the feelings are very different these days.
It would be really easy for me to sit here, with my completely healthy 3 1/2 month old, and say that of course we would have had her, no matter what. We're not having any more children. We're "free and clear", so to speak. We will likely never have to look down the barrel of that gun and make that very hard choice. But I will break the unwritten, unspoken mommy rule and say that, given our situation, had there been something seriously wrong with Megan before birth? Honestly? Completely honestly? We probably would have terminated. (...I say "probably" because I don't know 100% that I could/would have. I haven't had to make the call, so I can't say for absolute certain. Nobody can until they've been there and done that.)
Tim and I are still a relatively new couple. Some days it feels like we've been married for 20 years, but the reality of it is that we haven't even been romatically involved for a full two years right now. (It'll be 2 years at the end of May/early June-ish...) Financially, we would have been slaughtered...in a completely unkosher sort of way. Emotionally, we would have capsized. Quality of life with the disability aside, Tim and I can both attest to the fact that it's freakin' hard to be in a split-household and be poor when you're generally healthy. I can't imagine being in that situation with a disabled child. To me, it seems like it would be 10-x's more stress to have go through all the things my mother, Tim's mother did and have to worry about medical bills and have to invest so much time in doctor's visits and struggling to make sure that your child is in the best place educationally/mentally as their disability will allow...even having to take time off of work for doctor's vists and surgeries...sure, your employer can't legally fire you for that, but they can surely find another reason to let you go and some do...it's something that would always be hanging over your head...compounding everything else. It's A LOT to face. I am not that strong. I'm 99% certain you would find me curled up on my closet floor, bawling my eyes out on a daily basis in that situation. That is the ugly truth, but it is the truth...for us...and those are the only people that I can speak for. I'm not particularly proud of it, but it is the truth. This is the first and very likely the last time I will ever "say" it. I do not particularly want to think about it.
If I felt like my doctor had neglected to test properly and, at the very least, allow us to brace for the impact that a child with serious health problems would have on all three of our lives? I would likely lawyer up. That is another "if" though. There are some cases in which it couldn't have been seen... Megan's 5 month ultrasound wasn't definitive that she was a she. I don't know many people (there's always one in the crowd that would though...I'm sure) that would sue for damages if they bought all pink clothing and then had a boy in the end. It's tricky...it's all gut-feeling and opinion. I'm sure that if you asked different doctors about whether or not they think they could have seen Emily's heart condition prior to birth, some would say, undoubtedly, that it would have and should have been caught...while others will shrug and say, "Eeeeeeeh...maybe...maybe not." It's hard. It's a hard question to answer...on so many levels.
I can understand being upset if you are expecting that your child will be born with no health problems, and then he or she has down syndrome or some other condition. If it happened to me, I would be shocked. I would be hurt. I would probably be scared half to death. But would I sue the doctor? No. Even if there was a complication, and my child would not live long, I wouldn't sue the doctor. There is only so much that a doctor can be reasonably expected to catch. They aren't perfect, either. It is unrealistic to expect them to catch every possible problem that may or may not happen. Having a child is a gamble. Most people win, even if their child is born with a health condition. Sadly, some people lose. You know the stakes when you play the game. It would be like suing a casino because you lost a hand of poker. Okay, well, obviously a child's life is more serious, but you get what I mean.
Sounds like a great book. I'll have to check it out. Thanks for the recommendation. :)
@filtered_sunlight - You know what is funny; I was just reminding Matt that the first tech (the one that I thought was so unqualified and was making me crazy) did find the defect. She spent almost thirty minutes looking for that fourth chamber. It was after she called in a supervisor to look that the missing chamber was "found". I walked out of there so angry with that poor tech and she had been right the entire time.
I am the first to admit that Matt and I are very, very lucky when it comes to Emily and her needs. He has a great job that allows me to remain at home. Our insurance has covered almost every dime of the over million we have accrued. For us, this was the right decision, but like you, I can only answer for us.
I didn't mean to make you have to go somewhere you really didn't want to go, but I so appreciate your honesty. Give that sweet baby a kiss for me. I will be in the rosebushes if you need me.
@gwacemom - I swear Megan just coo'ed at Em's picture...lol.
My insurance ran out 11 days after I had Megan. We expected to be able to sign up for Medicaid, based on our annual income, so we passed on signing up for Tim's company's insurance. We then found out that, because my mother's house is in my name, we have too many "assets" to qualify...I could be okay with that, except they had led us to believe otherwise until it was too late to sign up for Tim's employer insurance.
I am not pleased with the chuckle heads that local government employs, to say the least. Tim and Megan can enroll in April. If she would have been hospitalized and/or needed surgery during this time span? We would have been ska-rued in a major way.
You didn't make me do anything. I wanted to give another perspective on it...a real and honest one. I just won't be renting a billboard for it any time soon... I feel like a lot of people would assume that, by stating the above, I'm saying that I wouldn't love a disabled child. That isn't the case at all.
...Tim wants to put cacti in one of the flower beds when we re-do them. He's actually become quite dedicated to the idea. Heh. Don't say I didn't warn you!
I love book recommendations, so I'll definitely give this a read.
About your suing for wrongful birth question...I know my husband would sue, but I wouldn't. I would want the doctor to be held accountable, but I think suing is going too far. And I don't think there's such a thing as "wrongful birth", either. That term actually irks me a little bit. It's the "wrong" part.
@filtered_sunlight - Megan knows another cute baby when she sees one.
What very few people know is that due to Em's disability, we were able to get a waiver and Medi-Cal covers any of our unpaid expenses. While our insurance has been great; it has been even better knowing that whatever they didn't cover, medi-cal would.
Tell Tim no cacti, that stuffs hurts!!
Oh, and I never doubted that you would have loved a child with or without a disability. Emily thinks you are adorable and she knows who is good and who isn't.
@gwacemom - Do you know if Medi-cal is a California only thing? I've known families here that struggled/struggle to pay medical bills for their disabled children when they either lost coverage or certain things weren't covered under their plan. Florida...we readily give up having a state income tax...while looking the other way on all the other things we give up in the process.
@filtered_sunlight - I know that for us it was Em's social worker through Regional Center that coordinated all that for us. It is my understanding the Medi-Cal and Medi-Caid are one and the same, but I could be wrong. I will admit to sometimes feeling quilty for taking the coverage because we really don't have huge out of pocket expenses, but the thing is; when Em turns 21, she will not be covered under our policy. This way, no matter what; I know she always has coverage.
I can tell you this; California is one of the better states when having a child with a disability. There are so many programs in place (at least for now, thanks Arnold for cutting our budget again), that benefit children like Emily. I would be lost without them.
@gwacemom - Maybe it differs on requirements state by state... Medicaid here is damned near impossible to qualify for. If I'm remembering correctly, there was an income cap of $26,000 annually, before taxes for a family of five. I remember gawking at the woman I was speaking with back in December and asking, "You're serious? There are families that make $27,000 and you expect them to be able to support 5 people??"
@filtered_sunlight - Oh, yeah, if we had to go through regular channels, we would have never qualified. Due to her disability they granted us a waiver which took the income out of the equation.
@gwacemom - Hmm. Now I wonder if we have such a waiver here and, if we do, if John & his wife know about it. (Another things Florida is good for: not telling you about options that are available to you. Like there's some class that government employees must attend where they specifically say, "Look, if you don't tell them about the programs, they won't use them. If they don't use them, we'll save money. If we save money, we just might give you guys raises next year!" or something.)
@filtered_sunlight - You might be right. Regional Center was developed here in San Diego to help with just these types of things. I had never heard of half the things they have offered us and I most likely would have never heard of them, but for them.
The requirement for us to receive the waiver was to be getting supporting services through Regional Center. They provide us respite care if I need it. With that one service Emily was able to qualify for the waiver and has had it since she was about six months old. It covers our co-pays for doctors visits, any deductibles, etc.
I would suggest to your friends that they research and see if such a waiver exsist. I can promise you they will have to research it themselves because the local Medi-cade office is not going to pony up that information.
Google medicaid waiver in Florida and see what pops up. I hope something does and this helps them in some way.
Thanks - now I know I should go out and grab this book... I love all of Jodi Picault's work, but just haven't gotten around to getting Handle with Care. Maybe it'll be my next barnesandnoble.com purchase...