On Saturday night, I watched a documentary film called Little Man. This film is the story of a couple and their child Nicholas, who was born premature at 25 weeks. He weighed only 1 pound at birth. He spent 5.5 months in the NICU (Neo-Natal Intensive Care Unit). The film chronicled not only his struggle to survive, but the absolute devotion of one of his mothers, and the detached, self-preservation of his other mother.
I know what you're thinking. This is not the sort of movie someone 28 weeks pregnant should be watching. But I had read a review of the film a few weeks ago that said this movie was absolutely gripping, and I know it's won several awards as well. And frankly, I needed to see it. And once I started watching, I was completely riveted.
I'll spare you an exhaustive plot summary, but essentially what happens is that Nicholas's difficult life started even before he was born. His parents worked with a surrogate, who carried Nicholas, because both women were in their mid-forties at the time. Nicholas was biologically related to one of the mothers, as is the couple's first child, a daughter, but they didn't find out which one was the biological mother, as eggs from both women were implanted during the surrogate's IVF cycle. They did thorough research, picked a surrogate whom they thought was wonderful, healthy, and a fantastic mother to her children. They paid her tens of thousands of dollars, as is the going rate for surrogacy these days.
Only after finding out she was pregnant with their son did they discover the women had lied on her surrogacy application. She wasn't in perfect health as she claimed. She had only one kidney. She had a history of pre-eclampsia (a life-threatening disease for both mother and fetus caused by extremely high blood pressure rates, and which causes pre-term labor), and a host of other issues. Pre-exlampsia caused her to go into labor with Nicholas at 25 weeks.
Nicholas was a teeny, tiny baby when he was born. His life in the NICU was spent literally covered with tubes, pumps, and needles. He "crashed" (or wasn't breathing) at least four times. One of his mothers felt that everything under the sun should be done to save her son's life. The other would visit the hospital infrequently, because she believed Nicholas had no quality of life at all, and that her partner wasn't keeping Nicholas's best interests in mind when she made the medical decisions to prolong his life with everything technology had to offer.
This movie raised several questions in my mind, which were posed throughout the movie by the documentary filmmaker, who was, coincidentally, one of Nicholas's mothers (the one who never left his side in the hospital). When does caring so much for your child become cruelty? The mother never wanted to cause her son pain, but clearly what he endured throughout the film must have. At what point do you say "Enough is enough" and turn off life support? Could you ever do that for your child to spare him pain both now and in the future? And perhaps most interestingly, What are we to make of a society that is creating selected disability? Meaning this: medical technology can keep almost every premie baby alive indefinitely. Nicholas went home after 5.5 months with oxygen tanks, feeding tubes, central line IVs, and a whole host of other equipment. The movie showed him growing until about age 2. He was virtually blind, couldn't walk, had massive hearing loss, a feeding tube in his stomach, and had several other diseases, including one that affected his central nervous system, making him unable to regulate his own body temperature or his muscles. So he's alive, but is he really? What is his quality of life? Is it even right to prolong the life of a premie whom you know will suffer, in some capacity, for the rest of his life?
I have more questions than I have answers. But this movie truly made me take a step back and examine where my own beliefs fall on this issue. And I'm still mulling them over today.
I know what you're thinking. This is not the sort of movie someone 28 weeks pregnant should be watching. But I had read a review of the film a few weeks ago that said this movie was absolutely gripping, and I know it's won several awards as well. And frankly, I needed to see it. And once I started watching, I was completely riveted.
I'll spare you an exhaustive plot summary, but essentially what happens is that Nicholas's difficult life started even before he was born. His parents worked with a surrogate, who carried Nicholas, because both women were in their mid-forties at the time. Nicholas was biologically related to one of the mothers, as is the couple's first child, a daughter, but they didn't find out which one was the biological mother, as eggs from both women were implanted during the surrogate's IVF cycle. They did thorough research, picked a surrogate whom they thought was wonderful, healthy, and a fantastic mother to her children. They paid her tens of thousands of dollars, as is the going rate for surrogacy these days.
Only after finding out she was pregnant with their son did they discover the women had lied on her surrogacy application. She wasn't in perfect health as she claimed. She had only one kidney. She had a history of pre-eclampsia (a life-threatening disease for both mother and fetus caused by extremely high blood pressure rates, and which causes pre-term labor), and a host of other issues. Pre-exlampsia caused her to go into labor with Nicholas at 25 weeks.
Nicholas was a teeny, tiny baby when he was born. His life in the NICU was spent literally covered with tubes, pumps, and needles. He "crashed" (or wasn't breathing) at least four times. One of his mothers felt that everything under the sun should be done to save her son's life. The other would visit the hospital infrequently, because she believed Nicholas had no quality of life at all, and that her partner wasn't keeping Nicholas's best interests in mind when she made the medical decisions to prolong his life with everything technology had to offer.
This movie raised several questions in my mind, which were posed throughout the movie by the documentary filmmaker, who was, coincidentally, one of Nicholas's mothers (the one who never left his side in the hospital). When does caring so much for your child become cruelty? The mother never wanted to cause her son pain, but clearly what he endured throughout the film must have. At what point do you say "Enough is enough" and turn off life support? Could you ever do that for your child to spare him pain both now and in the future? And perhaps most interestingly, What are we to make of a society that is creating selected disability? Meaning this: medical technology can keep almost every premie baby alive indefinitely. Nicholas went home after 5.5 months with oxygen tanks, feeding tubes, central line IVs, and a whole host of other equipment. The movie showed him growing until about age 2. He was virtually blind, couldn't walk, had massive hearing loss, a feeding tube in his stomach, and had several other diseases, including one that affected his central nervous system, making him unable to regulate his own body temperature or his muscles. So he's alive, but is he really? What is his quality of life? Is it even right to prolong the life of a premie whom you know will suffer, in some capacity, for the rest of his life?
I have more questions than I have answers. But this movie truly made me take a step back and examine where my own beliefs fall on this issue. And I'm still mulling them over today.
I dont think there is any answer for problems like this, especially no easy ones!
Wow. I heard something about the movie in passing, but haven't seen it, or really learned what it was about. I don't think there are really answers to the questions, and I can't imagine what I would do. Sure, it's easy to look at him now and ask what his quality of life is and question whether his one mother made the right decisions for him, but at the same time, what if everything in the end had worked out and he suffered no permanent problems.
Only thing I do know is that now this is on my list of things to see.
OMG look at these tickers!!
http://tickers.baby-gaga.com/pregnancy.php
Oh boy. I don't know if I could watch this one!
I have one you might enjoy -- now that you're well into your pregnancy. It's called Maybe Baby. Have you heard of it?
Wow, I don't know much about that movie but it sounds absoultely heart-wrenching.
I agree with Marie though, I saw Maybe Baby with my husband several months before we even knew we were going to do IVF, and really enjoyed it.
Hey Kristi-
Saw your post to me on my blog. I'm not comfortable posting my full picture on my blog, but I'd be happy to send you one via email....except I can't find your email address on here. LOL. Let me know what it is and I will send you a shot with my head. lol
Oh, wow. On the one hand I feel like it's inhumane to force life on another being that is clearly suffering. But on the other hand, everything is relative, and Little Man doesn't know any other way of living. So then does the joy he experience from the unbounded love of his mother compensate for the physical pain he endures?
I'm not comfortable with the idea that medical technology has come so far in its abilities to prolong life - I don't think we're ready to answer the questions you've posed, and that's something we need to be cognizant of. Seems like we've been riding medical advancement like cowboys on wild horses - just jump right on, hold on tight and hope like hell it all works out. Hunh...sounds similar to the Shrub administration's strategies.
As an ICU nurse, I know where I stand on this issue. I struggle with modern medicine and technology at times, because I think that there are times when we should allow people (of any age) to die with dignity.
I've heard of this film too. It does raise very powerful questions. I've seen family members take these heroic measures to keep their relatives alive--and later question if they did the right thing. When you're in the thick of it all--you can fail to see what might happen if the medical profession delivers a very imperfect result. And then, if you don't try to pull out all the stops and save a loved one, despite the odds, you can feel guilty. It's all so complicated.
And think of the previously "normal" lives that have been affected, especially the life of the older sister. - Whose parents are now dedicating so much of their time & energy to keeping Nicholas alive. Time & effort that *could* have been spent making her life all the more full and healthy. To me, this seems like a perfect example of "just because you can, doesn't mean you should."
Clare-I know. It's so hard, and so heart-breaking at the same time.
Christine-That's a good point. But I wonder if ANY babies born that early, would turn out 100% normal as they grow. Definitely see it, and let me know what you think.
Clare-They are adorable! I love the one at the top that gives you the growing milestones.
Marie-I haven't seen Maybe Baby, but I looked it up, and I am so renting that one. Any film with Rowan Atkinson in it is good in my book!
Hopeful-It's on my list!
Annelynn- Thank you. That really means so much to me.
M-I totally understand the anonymity thing. :)
L-You make some excellent points. And as Karrie says, just because we can, doesn't mean we should.
Ramona-I totally agree. And those poor babies in the NICU had no dignity at all.
Sher-It's a complete catch-22 situation. Personally, I think I would always ask myself "what if we just tried this last test/procedure/etc. and this was the one that would have made him well?"
Karrie-Another good point. I think a parent really has to think of the best interest of the child first and foremost, and go from there.
Oddly, we actually own Maybe Baby! You can borrow it if you want. We bought it (used) because of the Rowan Atkinson cameo... I love my Mr. Bean!!!