I have to admit, I am not normally a Dr. Phil fan. I was in the beginning, but his views about ADHD (or the lack of its existence) had driven me away.
Today, on one of my groups, someone mentioned that he was going to have triplets on the show that were born premature. I set it on my DVR and figured I would watch it later. I fully expected the show to be all about "miracles" but instead it was the opposite. I just finished watching it. I spent the entire show in tears.
The triplets (Zoe, Emma and Sophie) were born at 25 weeks. They are blind due to ROP and deaf due to the ototoxic meds used while they were in the NICU. Although the theme of the show was how their condition has impacted their mom and her husband (mom and bio dad divorced after the girls were born and mom re-married), Mom was quoted as saying, "I thought they would come out of the NICU unscathed."
A documentary was made about the girls in hopes of raising awareness about deaf/blind children and to raise money so the girls could get the much needed services that their parents can't afford.
You can check out the movie here. and read about the triplets here.
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23 comments:
Wow. What a story. I did not see the Dr. Phil show, but I did go to the site you linked and watched the documentary trailer. I really don't even know what to think or say at the moment. I just know that my heart breaks for the pain I can see in that Mother's eyes, and my heart breaks for what the future will hold for these three innocents.
Her honesty is revealing and educational, and yet there is no doubt of her love and devotion.
I saw bits and pieces of this at work today, and thought of you immediately. I wanted to watch the whole thing; a client had to fill me in. The future for her eldest daughter grabbed me in particular, as she had so little maternal attention. It was the fate I feared so much for my own eldest, while we were waiting for our twins to come.
I hope the person who told one of the posters "at least you still have your baby...." in the last thread saw the show. (I am the poster whose 28 week preemie girls died) It has been several years, and while I don't deny it was horrifically tragic (changed our lives forever/destroyed it for years) the big difference is, I was given time to grieve. When my sadness now gets to be too much, I can find something else to focus on for a distraction, or take a quiet moment. Our financial crisis lasted one year, not forever. This mother in many ways has "lost" her children, at very least lost their happy babyhood/young childhood, but she gets no time to grieve this at all, and that can only be at the expense of her sanity. My heart just aches for her. Im sure she is just so grateful for what has been given to her, and I hope all the help she is getting revives her, but she has lost something that Dr. Phil (or money) just can't give her.
I watched this show yesterday and I was struck at how few resources families have when they need a tremendous amount of support. Our current health care system doesn't fill in the gaps for families. :(
I have a question, maybe you or someone else knows the answer.
This story reminded me that when I was in labor at 23 weeks, I remember my OB telling me that our babies were at a high risk for being blind and/or deaf. Now, I always assumed that would be as the result of their extreme prematurity, and that their eyes and ears were simply underdeveloped. I understand that these girls became blind and deaf as the result of treatment in the NICU, but I wondered if blindness and deafness is also sometimes the result of prematurity itself?
I hope my question makes sense.
Lori - yes, the blindness that these girls have was a result of retinopathy of prematurity (ROP) and is for the most part, due to increased oxygen levels needed to keept them alive. Many preemies were blinded in the '50's because they thought back then if a little oxygen was good, lots must be better. .it wasn't. However, now ROP is something they are seeing again as a result of these tiny babies who need oxygen support for extended amounts of time.
They also did say that the triplets had profound deafness due to ototoxicity as a result of an antibiotic that was administered to them while in the NICU. Their hearing was normal until they got hit with whatever antibiotic was used that destroyed their hearing.
Wow - talk about mess. I did stay up late last night and caught the show on a remote cable station that re-runs Phil (I'm not a fan either). .this show was incredible. My thought was, every neonatologist in this country should see what this family is going through. The daily grind of massive amounts of direct care, how their older daughter is just being sidelined, the marriage is on the rocks, no help, financially destitute and on and on and on.
I could not help but think that the best place for 2 of the 3 girls at least, would be in a school for the severely disabled that specializes in deaf/blindness. This couple simply cannot (no one could) do it all and do it well.
And. .they should send the bill for all of this to the neonatal unit responsible.
In the ongoing filing project that is my life, I was just putting away a letter written by Dr. William Silverman shortly before he died. Here it is, in part:
"In the game of Russian Roulette, played with a six-shooter, the odds are 5-to-1 in the favor of the daring player, but rational persons refuse the gamble because the outcome of the less-likely event is so devastating. (And, in the form of Russian Roulette played in the delivery room, the odds of an intact end-result are often much smaller than 5-to-1).
"Basic decency demands that when rescuers and hospital administrators insist on playing Russian Roulette in the delivery room (overriding parents' request for comfort-care only) the gun must be pointed directly at the bank accounts of the activists. Self-appointed gamesters should be required to sign a contingency document: They should agree, in advance, to personally pay the full life-time costs of a disabled survivor. Although this drastic approach to restrain unwanted medical action may seem unrealistic, it is certainly fairer than the post facto remedy involving greedy tort lawyers and endless legal wrangling."
"Self-appointed gamesters should be required to sign a contingency document: They should agree, in advance, to personally pay the full life-time costs of a disabled survivor."
I admire you, Helen, but I have to disagree with you on this one. I agree that parents should be able to make the decision whether or not a tiny young preemie should have heroic measures. I agree that we don't need to "save" each and every tiny preemie. But I don't think that the person who makes the decision, be they the parents or the activists, should shoulder the responsibility for lifetime care. What if the activist IS the parent? Should we suggest that any parent who wants their 25 week preemie saved should only get that chance if they have a vast personal fortune? I see a proverbial slippery slope here. I think it more practical and humane to work towards better access to health insurance, maybe not quite as they have in Europe, but at least federal subsides for those devastated by medical costs.
To Anonymous:
I totally agree with you. If well-informed parents want "everything" done they should expect and get help in the NICU and beyond.
However, when doctors overrule the wishes of informed parents and insist on treating their infants *over* parental objections, they (the doctors) should bear some, and perhaps, as Dr. Silverman advocated, all of the burden.
As it is now, parents bear essentially all the burden, no matter what their wishes or choices.
And, as the film we are discussing shows, these burdens can be beyond any one person's (or family's) capabilities.
Well said, Helen. Our wishes WERE overridden by the neonatologist, and he still has his career, marriage, went on to have more children, has retirement, good health care, etc etc etc.
Everything of mine ended upon or shortly thereafter the birth of my twins, and the massive care needs of one of them.
Again, this is SUCH A WOMAN'S ISSUE! I miss Dr. Silverman's words of wisdom.
But the problem with this is that neonatologists are not robots to do the parents' bidding (although the parents wishes should certainly be factored in) they also have to follow their conscience and do what they feel is best for the patient, and answer to their professional ethics. The little baby is a separate human entity, not merely an extension of their parents. The suggestion that a neonatologist should shoulder financial responsibility every time s/he has to answer to his conscience and go against a parent's wishes and the outcome is sub-optimal is not practical, or even feasible (neonatologists don't make THAT much money!) it is political rhetoric. Better solutions should be things like better training for neonatologists to see long term quality of life impact and any data (such as the type Helen provides) to help them make the best decisions possible, not having the decision fall on one doctors shoulders; perhaps if there is a disagreement, an ethics committee meeting, with the parents should be in order, and above all better assistance and long term care when the "miracle" doesn't happen.
I am a nurse (who occasionally must answer to my conscience and advocate for a patient in a different way than the family wishes, sometimes for "more" care, sometimes for different care, sometimes for comfort care, and withdrawal of heroic measures.) I care deeply about the families, and realize that the wellbeing of the family greatly impacts the wellbeing of the patient, but my first responsibility is still to my patient. I am also a mom to a preemie whom a neonatologist tried very hard to make me feel bad when I raised the possibility of no heroic measures before 26 weeks.
MD: "Well, its true, she may not go to Harvard, but surely you can live with that!"
Me: "I'm not asking if she's going to go to Harvard. I'm asking if she'll ever in her life be potty trained."
To be fair to the doctor, though, part of the problem was a need for education on MY part. My information was partly gleamed from previous 25-27 week babes I had seen in training some 10 years prior, and I needed more up to date information. But she was still annoying. And I didn't want her over-riding me. But she never could have financed our daughter's care. I think it's just more feasible to a) better educated HER, and b)not have the decision rest solely on her shoulders and c)should a group of people, with my input, decide that "saving" my baby was the ethical thing to do, and it went badly, I would definitely want a financial and social safety net. Not that annoying neonatologist's salary.
To Anonymous who said:
"But the problem with this is that neonatologists are not robots to do the parents' bidding (although the parents wishes should certainly be factored in) they also have to follow their conscience and do what they feel is best for the patient, and answer to their professional ethics."
No one should be asked to do something that against his/her conscience. But the situation now is that parents are at the mercy of the personal beliefs of whoever it is who is on call when they deliver, and they have no way in advance of knowing what those beliefs might be (also the docs have little or no knowledge of the parents and their wishes.)
This is a situation I would like to end by having prenatal discussions and directives, and by having physicians and hospitals openly state their policies and personal beliefs.
That way parents can at least have a chance at teaming up with caregivers who feel as they do.
There would be transparency to the process for everyone involved.
Also to Anonymous:
The suggestion about docs' financing the rest of the child's life, was, of course, a facetious one on Dr. Silverman's part.
For my part, I would like to see any doc who forces treatment on an <26 weeker against the parents' wishes liable for assualt and battery.
And again to Anonymous who said:
"To be fair to the doctor, though, part of the problem was a need for education on MY part. My information was partly gleamed from previous 25-27 week babes I had seen in training some 10 years prior, and I needed more up to date information."
You were right to rely on the info from your training 10 years prior since there has been no discernable change in developmental outcomes in <26 preemies. They were, and remain, very poor.
That doctor was totally out of line -- misinformed and, many would say, acting unethically to try to pressure and demean you this way.
Anonymous wrote "MD: "Well, its true, she may not go to Harvard, but surely you can live with that!"
Using intelligence as a way of determining whether or not we should save preemies is so upsetting to me. The MD you write about is not the only one to make a statement of that nature.
I would give up my daugther's intelligence, all of it, if it would take away the mental and physical pain that she endures on a DAILY basis.
Anonymous said "they also have to follow their conscience and do what they feel is best for the patient"
I feel that there is no area of medicine that has less of a conscience than neonatal medicine. If neonatologists practiced conscience-based medicine, there would be concern and mutual working toward meeting the needs of all children they are saving - especially those who are severely impaired. Often times, it appears that rather than take responsibility, it is easier for them to negate, dismiss and pretend that families like these triplets, and like many of the parents on this blog do not exist.
Helen wrote: "You were right to rely on the info from your training 10 years prior since there has been no discernable change in developmental outcomes in <26 preemies. They were, and remain, very poor."
This will be one of my next posts-NICU then and now.
But, what I wanted to add to Helen's comment is that quite a few neo's that I've heard from (recently) have said that they would save their own child it he/she was born before 25/26 weeks.
The first neo that spoke to hubby and I (when my water broke at 23 weeks) told us that he would not save his child if he/she was born before 26 weeks. And, that was 8 years ago.
To The preemie experiment who said
"But, what I wanted to add to Helen's comment is that quite a few neo's that I've heard from (recently) have said that they would save their own child it he/she was born before 25/26 weeks."
They would?
There's a fairly up-to-date review of current attitudes on neonatal resuscitation and treatment which I've referred to here before:
Kaempf et al.Medical Guidelines for Periviability Counseling. _Pediatrics_2006,117:22-29.
I *think* this article is available free of charge on the _Pediatrics_ website. If not, let me know.
Correction... what I intended to write was that the neo's have said they would NOT save their own child if he/she was born before 25/26 weeks.
My error Helen.
Also, I am confused (the blog world has taken away all of the brain cells that had remained after my teenage years). If the Born Alive Protection act legally says that the docs have to save the babies, then how are they getting around this law?
To The Preemie Experiment, who asked:
"If the Born Alive Protection act legally says that the docs have to save the babies, then how are they getting around this law?"
This "law" like the Baby Doe "law" before it, was cynically and quietly pushed through Congress by Right Wing Fundamentalists, and has been largely, and *rightly* IMHO, ignored by many medical practitioners.
It has, however, intensified an already existing climate of fear.
The somewhat similar Baby Doe "Law" (enacted under Reagan)has caused 2/3 of doctors to give care that they say fails to consider the suffering of infants or the rights of parents.
Some have even suggested that such "laws" have become instruments of child abuse that are "prolonging dying under conditions of a brutal intensive care from which there is no escape."
So far, I'm not aware of any prosecutions under the Born Alive Act. But if the Republicans keep the White House and regain control of Congress in 2008, all bets are off...
Yesterday in the New York Times, there was an article about a revolving entry to the hospital or to the convent or clinic, where babies could be left if the mother could not care for them---the article traced back this practice of leaving babies on doorsteps (or in reed baskets in the water, a la the Old Testament). Combine this idea,modified slightly, with the proposition of sending the bill for a lifetime of care, to the neonatology dept. You would have babies, toddlers, children left for neonatology to follow-up on forever. The dept would have to expand to accomodate its "foundling" population. The expanded dept would be a dept of pediatrics, to include therapies, early intervention services, educational services till age 21. The neonatology dept could then fight the battles for SSI, Medicaid support, or other funding. They could hire the therapists and set up the developmental delay guidelines. They could become early childhood people, as well----all the things that parents of preemies are now doing and funding.
Saroj Saigal says "No problem here" in her most recent research in Pediatrics, March 2007. So, let Dr. Saigal and her fellow researchers take on this "simple" task, and see how simple it really is! She is quite sure it will NOT be a drain on the healthcare system.
Talk about blindness and a deaf ear turned to the real issues and the real cost/drain
----the docs and researchers have the triplets beat by light years!
Chris and Vic
The preemie experiement says:
"If the Born Alive Protection act legally says that the docs have to save the babies, then how are they getting around this law?"
I just finished a post on my blog regarding this very question. The AAP Committee on Bioethics writing on the Baby Doe regulations in 1996. claims that the Baby Doe rules allow considerable discretion and are consistent with individualized decision-making by clinicians and parents using the best-interests standard. This view is considered and rejected because these rules thwart individualized decision-making using the best-interests standard for infants.
Further reading on this can be found here:
AAP Publications
To Premature Labor:
I think the idea that the Baby Doe laws (state or federal) allow any discretion is questionable.
But the wording of all these pieces of legislation are open to interpretation. I tend to read them literally, not having been schooled in legal nuance.
I have also read legal opinions stating that none of these laws would withstand a higher court challenge.
At least that was true before the recent Bush court purge.
Frank "Tony" Clark, attorney and neonatologist, is the person I trust most for information on these thorny issues.
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