I am the mother of three boys, but the parent of two. My three children were born extremely prematurely, but it was just too much for my first son.

My  surviving boys, Oliver and Victor, weighed 1 lb 11 oz and 1 lb 13 oz respectively. Because being born at 26 weeks (14 weeks early) just wasn’t enough of a hardship, Oliver also has a serious heart defect totally unrelated to his premature delivery. He had his first heart surgery when he weighed 3 lbs. 5 oz.

My children suffer from chronic lung disease and were both on oxygen for a year. The combination of a bum heart and crappy lungs has been a terrible burden for Oliver.  He has been admitted to the hospital with pneumonia more times than I care to count, a common cold has him off of school for a week, and he is always the last in phys ed. He is the happiest, sweetest boy you will ever meet, so most days it doesn’t get him down.

Both of my children bled into their brains at birth, a type of stroke unique to premature babies. Premature brains are meant to be cushioned by amniotic fluid, not exposed to gravity and the other harsh environmental realities of life outside of the uterus. For Victor, that meant cerebral palsy. Tight, twisted muscles and balance that made him wobble like he was constantly three sheets to the wind. For Oliver, that meant muscles that are weak and collapse. At the age of eight, holding a pencil correctly requires a look of such intense concentration that it breaks my heart. Every time.

My kids, through the wonders of modern medicine, intense work at home, and amazing public school teachers have defied the odds. They look healthy and happy and act crazy like eight-year-old boys should. However, on paper they’re still a combination of these words: dystonic cerebral palsy, hypotonia, congenital hypothyroidism, right ventricular hypertrophy, cerebellar dysfunction, bronchopulmonary dysplasia, asthma, moderately severe pulmonary valve regurgitation, severe gastroesophageal reflux, less than 5th percentile in height and weight.

If the Affordable Care Act (ACA) is struck down by the Supreme Court, any one of those diagnosis will make them uninsurable and I will need to face reality and guide them to careers where they will be part of a large group health plan. They can never work for a small business (they’d drive up the premiums) or, God forbid, for themselves (they could never purchase an individual plan). That American mantra of, “You can be anything you want to be when you grow up” just won’t apply to them. I’m not sure what I’ll do if they show any proclivity for the arts. I want them to have health care.

A caste system involves social restriction and social stratification with membership determined by birth and remaining fixed for life. By that definition, if the ACA is struck down, we will once again have a medical caste system for premature babies and every child born with any medical condition.

Except the American medical caste system is anthropologically unique. If re-established by the Supreme Court, at anytime anyone can find themselves a member.

Join the Conversation


  1. Yes – I so agree! I can’t relate to that as I’m not a mom but being a young adult and paying for my own health insurance is so hard! I had nasal surgery at mayo clinic last month – thankfully my parents have paid but the bill was $25k plus a few $2k appts. I am so appalled by how much healthcare costs adults. I lived in England for a year to do my MA – I was covered by NHS and used them a few times – ya I had a small wait but didn’t have to ay for appt only medication. I don’t think America will change with all these big health insurance companies profiting.

    But I understand you want your children to do anything – my parents have always been like that too

    It’s just hard in our society w healthcare costs etc

  2. I am not sure how you can be against healthcare reform, ACA, when you see the tremendous disparages between health insurance for the healthy and those with pre-existing conditions. The current system virtually forces people onto Medicaid, tax payer funded health insurance.

  3. Thank you Dr. Jen, for this very personal post. Although my son is healthy, he is a musician and as his mother I see the challenge this could be for his ability to have affordable care. I worry and I hope that change will come.

  4. Thank you so much for writing this. I live in terror of one of my children developing asthma like their mom. My daughter had to have her skull reconstructed at 11 months of age due to a birth defect. Without the ACA, she, too, will have to be guided to a career that will guarantee her health insurance. Working for herself seems unlikely. Being in the arts, will not happen. She won’t even get a chance to experiment or try something because it’s interesting because she will first and foremost be the girl with the skull issues.

  5. My eldest son has a heart defect and I am worried for the day he ages out of our health care plan. It frustrates me that this is even under discussion. Shouldn’t we as a society want to take care of our weakest members? Especially since you never know when you will need the same compassion from others.

  6. Thanks for the post. I am fortunate to have two healthy children, and will be able to keep them on my policy for a few extra years, at a group rate and some help from a generous employer (and a union).

    And while you see a caste system in American medicine, as do I, I also see a guild system. Medical licensure for many of the professions are cost prohibitive to large numbers of otherwise qualified individuals, to say nothing of the lack of training facilities. I dare argue that the intelligence and skill sets of a medical doctor are comparable to an auto mechanic, and if the licensure requirements were similar we would have either much less expensive and more available health care, or far fewer cars. Actually, maybe switching the requirements for the two professions might be a good thing over all…..

    Your children are very fortunate to have you.

    1. you cannot possibly think that the intelligence and skill sets of a medical doctor are comparable to an auto mechanic.
      please tell me i missed your point!

  7. Thank You Dr Jen for a well written post about your son’s chronic diagnoses. You mentioned our current system creating a caste system with those that have health insurance and those that do not. This is so true. The Affordable care act is so needed that the US can stop politicization of individual life’s. Rich

  8. This goes to the heart of the structural problems in healthcare payments. The current system is exclusionary -isolated pockets of wealth and resources. Apply the brutal calculus, and pre-existing conditions have a disproportionate impact on the resources of these small enclaves.

    Over the past year, and particularly at the beginning of this one, I’ve seen a large number of small employer and union trusts have to make some rough decisions on what they cover, how much, and at what rate. At least in terms of scripts.

    The historical connection of insurance coverage to employment is at the crux of this. It’s the mechanism by which risk and resources are isolated. Changing it is profoundly difficult, as it’s something the entire system currently pivots on, and the alternative is odious to different parts of the political spectrum, for different reasons. Centralizing risk and resources demands something in the public sector, and there’s substantial mistrust of that. Not without good reason of course.

    Centralizing also means a loss of control over coverage. Even within the little enclaves of coverage, not everything is created equally. Some examples:

    A large group health insurance program run by a VERY well known media company offers different benefits to high level management and the rank and file. On one end, the program has no out of pocket expenses, no restrictions, no formulary. #90 Viagra for 30ds every month? Sure. $200,000 of fertility treatments a year? Yup. Sloppily loose restrictions on Botox to let cosmetic use slip through? Oh yeah. On the other end, pretty much all of those are non-negotiable benefit exclusions.

    Another program for a nationwide retailer. Extremely large. Can adequately be described with a gagging sound. But hey, right now it’s their money. And they can choose what they pay for, and how much.

    On the other side of it, there’s a 100,000 member union trust trying to decide between a 30% premium hike, or mandatory mail order and a 10% hike.

    The big thing about the ACA is the block of pre-exising conditions, the individual mandate, and the exchanges. These aren’t fixes, or even all that dramatic changes. I’m looking at it as something as more of a corrective brace, something that will be grown into and move the system towards a more healthy structure.

  9. This article looks through the prism of conventional “wisdom” and ignores the many other options (options that will be substantially diminished or eliminated by Obamacare).

    1. Notice how people who mention “many other options” never discuss what those options are? That’s because there are only three options: Government-provided insurance, individual mandate, or letting sick people die. The end. That’s why Republicans never talk about the “replace” part of their so-called “repeal and replace” strategy and not a single Republican has offered up a plan that will work for those with pre-existing conditions.

  10. Great post. I’m Australian but understand your dilemma . Victor and Oliver look like rascals, what an amazing history. Their mother shows lots of determination so they come by those genes honestly! My thoughts for your loss of your first boy and my admiration for your efforts with these two treasures.

  11. If emotional arguments were sufficient to overcome the hurdle of our constitution, the nation which we live in would be very different indeed. However the reality of faults in our health care system, a law that usurps authority not found in the constitution has to be found unconstitutional even if the immediate consequences are unpleasant. To do otherwise undermines our system of government and leads us ever further away from a nation whose governments’ powers are defined and constrained.

    The constitutionality of the PPACA’s health insurance mandate coupled with a lack of a severance clause makes it very likely that the entire law will be eliminated. If it is, then I believe it is incumbent upon us to find a constitutional solution to our health care problem. One that serves the people and not the insurance lobby (as the PPACA certainly did). If we can do that, then I think we will be much better off overall.

    1. If you think any time soon anyone’s going to tackle a health care system overhaul if the ACA gets thrown out, you’re wrong. In the meantime the collapse of the health care system for the uninsured, poor and much of the middle class will take a big toll.

      1. I agree. People who don’t have friends in countries with national health plans don’t realize the peace of living in an environment without the worry of a catastrophic illness and a lifetime of medical debt. Also active national health statistics are kept, eliminating the ongoing use of faulty medical devices (metal-on-metal hips, certain types of defibrilators, to name two). As CBS news reported 2 weeks ago, FDA is sitting on reports of deaths and morbidity, not reporting them anywhere–also there is no active following of inserted medical devices, so that they can be pulled from the market sooner. The metal-on-metal hip I had inserted 4 yr. ago, and now has been removed along with a necrotic muscle due to the metal shards, had been removed from the market in single-payer plan nations two years before I had mine inserted in the US. There is no excuse for this neglect of the health of citizens in this country when we spend more money than any other industrialized nation for health “care.” In a nation with a national health plan, it benefits the nation for its people to be healthy. In the US, profit is all–people need care because of failed treatment, and more profit is made because they’re back in the hospital. There’s a lot wrong with this foundation for a “health system.” Obama compromised greatly from his original plan, and I hope it will soon be expanded, and hopefully bring this country’s health stats up a little higher. Oh, and did I mention that we have the worst health outcomes with our “health care” of any industrialized nation? Some second-world countries have more healthy citizens!

  12. You also brought out directing your son’s into careers that will get them into a larger group health plan to help with their care. Our system of employer “self-managed” insurance gives employers control of what services are paid and how much. Single payer in our capitalistic system seems abhorrent to an effective payment system where competition is used to lower costs and improve quality. Health care is highly resource intensive and competition can make costs much higher. Single payer with a goal of affordable care for everyone is the only real way to lower health care costs.
    Rich Hartmann – RHIT

      1. “competition can make costs much higher…really? Why do you think that?”

        Duplication of services with high fixed costs raises costs. For example, if mammograms cost a lot, increasing the number of mammograhy units shoudl bring costs down, right? Not in reality. Mammography units have high fixed costs, if you decrease the number of mammograms being done by any unit (as the number of units where women go increases), you increase the costs per mammogram as the fixed costs are spread over a lower number of mammograms.

        You can consider the same in MRIs, CT scans, etc. If there’s more than one hospital in town and they compete to perform CABG, two bad things can happen: There are only a limited number of people who need CABG and as they split the patient base the per operation costs go up, not down. And/or one or both hospitals start performing CABGs on patients where it is only marginally, if at all, indicated, causing overall health care spending to go up with no benefits to anyone. Except the people who are making money on performing CABGs of course.

  13. I see your situation as an example of why the President and his congress should be held responsible for the irresponsible and lobby-beholden way they wrote this behemoth mostrosity. Did no one realize that a consumer mandate would be unconstitutional? But it would be more palatable to the medical insurance industry than true tax-supported universal care (which is much more arguably constitutional). The politicos pandered, not to parents like you, but to lobbyists, and as a consequence your family will have to go longer without the security you deserve.

    Your analysis of the problem with US health care is sound. Your solution – supporting an unconstitutional and unaffordable ACA – is flawed. Americans need to insist on true health care reform that puts the needs of the constituency over the interests of powerful lobbies.

    1. Absolutely. While I agree 100% that we need some measure of healthcare reform, I can’t support the ACA. This bill needs to be repealed, and we need for our government to sit down and draft a real well-researched measure that people actually get to read before they vote on it. The current law was based on the basis of emotion alone and simply can’t serve. It’s constitutionality aside, there’s no way to pay for it. I would implore anyone who passionately supports this law to actually read it. If you haven’t read it, you have no business weighing in. There was a post earlier about the current system driving people onto medicaid, and that is exactly what this bill does. Further, it mandates that people who can’t afford health insurance get it anyway or be penalized by the IRS. How does this help the situation? What does that fix? Small businesses will be driven out of business by the penalties incurred. If one person at a business with over 50 employees finds their insurance to be unaffordable, then the company is charged thousands of dollars in fees for every employee they have (over 30. The first 30 are free…) How can our current economic situation bare such a burden? Shouldn’t we be doing something that helps rather than hinders the recovery and does not add more debt?

      1. The only reason conservatives now think a mandate is unconstitutional is because Obama would get the credit for taking their idea. Every serious Republican (although that is an oxymoron these days) believed in an individual mandate before the Democrats became the party to actually pass it. Because they care far more about winning political office than taking care of the American people, they took the only option available to them: getting the wack-job right-wingers of the Roberts Supreme Court to pretend it’s unconstitutional.

    2. Conservatives didn’t believe a mandate was unconstitutional until after it passed. I’ve read that about 85% of lawyers thought the Supreme Court would find it constitutional. In fact, I still think they’ll find it constitutional.

      1. Google “ObamaCare” and “unconstitutional” with your time parameters set before 3/10.

  14. Thank you for such a personal and relavent article. What makes me so crazy about the ACA is that when polled about each provision of the Act, respondants were all for it, but once politicians got their spin on it, the public turned against the Act as a whole. It just doesn’t make any sense! I hope the Supreme Court does the right thing, but my faith in them is not what it once was. Best of luck to you and your family.

  15. My heart breaks for your family, and all the others who are denied a basic human right for the crime of being ill. It’s a sick system when only the healthy and able can get access to health care.

    I’m British, ill but alive. A flat prepayment fee of £104 a year gets me as many prescription medications as I need. I have a private health plan (£34 a month) that not only covers my existing conditions if I choose private treatment, it also pays me £100 per night if I’m admitted to an NHS hospital. If I choose the private hospital there are no co-pay or excess fees.

    That plan is provided by my (same sex) partner’s employers.

    If I’d been born in the US I dread to think about how life would be, would I even be alive?

    I hope the ACA passes. You deserve better.

  16. My favorite part of the health care debate at the Supreme Court was when Justice Kennedy asked something along the lines of “why can’t they just go out and buy insurance like the rest of us?” Justice Kennedy has been a federal judge since 1975. He never had to buy health insurance and he does not have the same worries as you Jen. And you and I paid for his federally funded health insurance.

    1. This WAS troubling. In the same vein, we had members of congress who are similarly disconnected drafting the law… Somehow, regardless of how this whole things was portrayed, the people got left out.

  17. Thank you so much for this post. I am a pediatrician’s office manager and I see this every day. We deal with Children’s Medical Services, which is basically Medicaid for children with serious conditions and while the case managers are just amazing, it certainly makes a difficult situation much much worse. A lot of parents of generally healthy kids who don’t qualify for Medicaid just don’t get insurance – they can’t afford it. And then something happens and they end up in the ER with a $2000 bill they can’t pay. It’s horrible. It needs to change.

  18. I am bracing myself for the repeal of the Affordable Care act, though I hope it is sustained. It is the stories such as yours that make its importance real. Victor and Oliver are lucky to have a mom like you. Their eligibility for care should depend on our societal commitment to them rather than the lottery of our present system which requires economic security.

  19. Last year, I was struck down unexpectedly when I suffered a burst appendix. I was rushed to hospital, operated on in hours, and then spent weeks recuperating as the wound got horribly infected. (Very normal with a burst appendix, I am told). My care was brilliant – for example I had my wounds dressed every day by a trained nurse for about three weeks, and all the rehabilitative advice I needed.

    I’m not insured. it didn’t cost me a penny. I live under the NHS in the UK.

    It constantly amazes me from this side of the pond when I see the misinformation and downright scaremongoring that goes on in the American healthcare debates, about what living under a nationalised health service, tax-payer funded, free at the point of delivery to ALL, is like. I can tell you as a middle class tax-payer (paying 11% national insurance tax plus 40% income tax on all my earnings over about $90,0000 that it is brilliant – amazing and something I am so proud of.

    Now we just need to defend it from our own politicians who want to dismantle it and be more like you guys…… *sigh*

  20. Last year, I was struck down unexpectedly when I suffered a burst appendix. I was rushed to hospital, operated on in hours, and then spent weeks recuperating as the wound got horribly infected. (Very normal with a burst appendix, I am told). My care was brilliant – for example I had my wounds dressed every day by a trained nurse for about three weeks, and all the rehabilitative advice I needed.

    I’m not insured. it didn’t cost me a penny. I live under the NHS in the UK.

    It constantly amazes me from this side of the pond when I see the misinformation and downright scaremongoring that goes on in the American healthcare debates, about what living under a nationalised health service, tax-payer funded, free at the point of delivery to ALL, is like. I can tell you as a middle class tax-payer (paying 11% national insurance tax plus 40% income tax on all my earnings over about $90,0000 that it is brilliant – amazing and something I am so proud of.

    Now we just need to defend it from our own politicians who want to dismantle it and be more like you guys…… *sigh*

    1. Help me understand what you stated: You are a ‘middle class taxpayer’ and you pay what tax rate? 11% insurance tax on what amount? What is tax rate for under 90,000? Obviously you did not provide all details for me to judge the effective/total tax rate you pay; but I would not be so proud of paying what appears to be a 50% tax rate. That’s insane for a “middle class” person. Insane.

      1. Also, you state “it didn’t cost you a penny” and then you go on to state you pay an 11% insurance tax and a usurious middle income tax rate of 40%. So, in fact, it cost you quite a few pennies and pounds, eh?

  21. I’m sorry but the argument does not make sense. These beautiful boys were born before PPACA and got good care. PPACA does not really solve the problem that the government created in the 1940s: Granting our employers monopoly control of our health dollars. If the individual market were the market of first resort, your boys’ coverage under your policy would be guaranteed renewable as they reached the age of majority, because that’s what people would demand. Because the government has made the individual market the residual market, this solution does not exist.

    Even if we can’t get to a situation where the government allows everyone to own his own health insurance, we could have a system where the government pays an actuarially accurate subsidy to pay for the sick person’s premium. That doesn’t require the federal government (unconstitutionally) to direct the practice of every physician in the country, as PPACA’s IPAB does.

  22. You are presupposing the absence of any other changes in the health care system if the entire Affordable Care Act is struck down. Since both major parties wish to address the issue you have, that is unlikely.

    1. I’ll say exactly what I said above, “If you think any time soon anyone’s going to tackle a health care system overhaul if the ACA gets thrown out, you’re wrong. In the meantime the collapse of the health care system for the uninsured, poor and much of the middle class will take a big toll.”

      And your belief that “both major parties wish to address the issue” is unsupported. Only one major party has tried to address the issue and the position of the other major party has been to block every effort.

    2. Amy, do you seriously think Congress will be able to pass any reforms of significance now? You see how toxic the political environment is. You see how influential the various interest groups are. Even if both parties “wish to address the issue,” they won’t be able to do so in such a way that pleases all of the various groups that influence the system. And heaven forbid a politician actually compromise a little – said politician will have a primary challenger in their next re-election campaign before you can say “Tea Party” or “Fire Dog Lake.”

      Look at how much cajoling and deal-making and arm-twisting it took to get the flawed but still helpful PPACA passed in 2010, and do so without a single vote from the other side. Thanks to the Senate’s filibuster rules, it essentially takes 60 votes to pass anything, which means people from both sides will have to vote for it. Which politician, desperate to keep their plush job with even plusher benefits, will want to risk that, even if it is the right thing to do?

  23. Thank you for sharing this. I get so angry when I hear politicians and voters argue against universal healthcare. The emphasis on INSURANCE instead of healthcare also drives me bonkers, but the realist in me has ceded that battle.

  24. I know I am late to this however I wanted to share our story. I have 8 year old twin boys who were premature, they have immunodeficiency they do not make enough IGG therefore every three weeks they receive infusions at children’s hospital. They also have some bone issues, balance issues and one is dyslexic. When we were on private insurance through their dads employer our co pays were staggering for their treatments, we had upwards of 100,000 in bills and the monthly minimums they wanted were impossible to maintain.
    My husband left and divorced me, since I was their sole caretaker I lived on child support and the boys went on Medicaid. Since then their dad lost his job and stopped paying his support. The tough part is this, if I go back to work to help supplement I will then make too much for the boys to have Medicaid therefore ill be back to paying the high primiums and co pays for their treatments that will consume my salary leaving nothing left to live on. I feel as though I’m trapped in a box. We live with my parents and I live on the random child support he may pay. There is a huge gap in the government guidelines for help so that soon there will be no middle class. If you have a car worth more than 1400 that’s an asset to them and you will have to sell it to get medcaid, how you then get your children to appointments is beyond me. If you make more than 3000 in a month for a family of three you lose all forms of benefits and help. However that is not nearly enough to meet your medical bills when you have children like ours.
    Ive seen children at the infusion center receiving their chemo who are so scared and sick and they are there with a family friend instead of their mother because their parents are working two and three jobs each to stay afloat and bridge the insurance gap. Something must change. No one option will ever be perfect nor will everyone agree, however America can do so much better than we are. Blessed are the politicians who have government paid health insurance, i suppose this makes them incapable of understating their constituents situations the current system creates.
    Dr. Jen I think you are an amazing woman, mother, and professional. Thank you for giving me inspiration.

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