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Ethics of Fetal Intervention, and another big idea

I was invited to participate in a panel discussion yesterday, at Mount Sinai Hospital’s bi-annual Fetal Update conference (which continues today).  I was there as a parent, joined by 3 ethics professionals, a fetal therapy physician, and a social worker. We were part of a session called “Ethics of Fetal Intervention” which represented a noticeable diversion from the rest of the program.  (To illustrate: we were slotted between sessions on Neural Tube Defects and Cardiac Lesions.)  The 100+ audience included sonographers, radiologists, obstetricians, nurses, and other clinicians involved in antenatal assessment and diagnosis. They were an interested and engaged crowd – made for a lively discussion with lots to digest afterwards.

I wish I had recorded the session!  Instead, a summary and my thoughts of one of the discussions:

A dilemma:

What exactly constitutes informed consent?  At what point can a clinician believe that the patient is fully informed and has what she needs to make a decision?  How much information is enough?  I was moved by the dilemmas and uncertainties expressed by the audience – they do their best yet know there are shortcomings.

A story I shared:

At the time we were making decisions about Owen’s fate in utero, I was focused only on whether or not the risk was worth the intervention.  It was a relatively easy decision – if we didn’t intervene, he would likely have died. So we proceeded.

We didn’t know about his future disabilities at the time.  If someone had said, “Your son will never walk, talk, hear, hold up his head, eat on his own, will always need full care and will probably die before he reaches his teens” –  I would likely have aborted, or at least not intervened and shifted to palliative care.

However, if someone had said, “You are eventually going to reach middle age having lived an extraordinary experience that will change your world view and make you a better person.  You will do more than just survive – you will embrace your son and his life and even his death and you will be grateful that you took this path” – well, I may have hesitated, but then would have moved forward with more confidence and less fear.

The point I was making:

My 28-year-old self couldn’t have imagined how my 42-year-old self would mature and transform. The medical information, which I perceived as complete and enough to go on, offered nothing to predict the realities of what life might hold.

With the passage of time my recollections of life with Owen have little to do with medical details and trivia, hospitals and interventions – and everything to do with our relationship, our community and our experiences together.

My conclusion?

Those with lived experience (which almost no one in the neonatal clinical setting is likely to have) can offer the most revealing glimpse of what life might be like, should the parents make certain decisions.

A possible solution:

Bring together a diverse panel of parents to discuss the decisions they made and the consequences of those decisions – including those who chose to terminate their pregnancies.  Perhaps create a series based on diagnosis, prognosis or whatever else.  There can be additional panels of teens and adults who survived their parents’ decisions with disabilities and diagnosed conditions, as well as panels of clinicians discussing their own decision-making processes regarding how they present information, communicate with families, and their feelings about it.

Record the sessions and offer the downloads/DVDs to deliberating parents.  Encourage them to wonder how their future selves might look back on this terribly confusing time.

A project for me?

I just might take this up. What do you think?  Would you participate?

——-

A bit about Mount Sinai:

Mount Sinai Hospital in Toronto is a world leader in fetal therapy, a discipline that provides life-saving or otherwise impactful interventions to fetuses (and moms) in distress.  We’re no strangers to their Fetal Medicine program – Owen’s interventions were performed there.  He was also delivered at Mount Sinai and lived in neonatal intensive care for 3 months.  I have a deep respect for the staff of the Fetal Medicine Unit – I have known some of them for 15 years now and have witnessed first-hand their ongoing efforts to continue improving services and communication – both of which, for the record, are unparalleled.

Speaks volumes about their integrity that I would be invited to talk candidly about my experiences and reflections in an open forum.

Jennifer

15 Comments

  1. Jennifer your sister (correction: aunt) Joyce directed me to your blog. I’m glad to find it and await a moment to read more than this post. I have a wonderful nephew who has Down’s so she might be interested in participating. But she’s in UK. Anyway your idea sounds very good.

  2. I would participate in a split second.

    Wish there were actually programs like this in place, all over the world. I wish I had this resource 5 1/2 years ago as we received a few of Zoey’s DX’s.

    I feel like this runs along a similar line, to Elizabeth’s Extreme Parenting video. I participated because I felt like it was my responsibility. It was the right thing to do. Honored to do so. This would be no different.

    • Hi Zoey’s Mom,

      Elizabeth’s video project was wonderful and I found it immensely moving. I will fess up that I didn’t contribute – thought long and hard about it but in the end, obsessed myself out of thinking I had anything to say. Was a missed opportunity, for sure.

      Thank you for sharing that you would have found something like this useful – I go back and forth about it – its purpose, and the inherent risks around authenticity and perspective… surely something like this can’t be done completely objectively? I guess it’s just a matter of stating the intention and known bias up front. Anyway, if you have any implementation ideas I’d love to hear them!

    • Thanks Meriah – was never really happy with the last layout. Too fussy and confusing. Was time to downsize!

      Thanks for popping by :)

  3. Not sure I qualify because my gal wasn’t born with her disabilities…still…totally interested.

    • Lordy Claire you qualify all over the place :) This suggestion was made in the fetal context because that was the conference I was at… but honestly I see more application in pediatrics – where the parents are now dealing with the kid they chose or ended up with. I think a panel of parents with your experience would be awesome. (Watch out, I’m making notes…)

  4. I think it would be an interesting panel, but l can’t imagine jumping over the hypothetical aspect of all it — what would I have done if I’d known? what would I tell my daughter to do if she knew? Do I regret what I did or didn’t do? I’m not sure there are every any answers to these questions except for the answers one comes up with in the moment — that eternal moment.

    I do find fascinating your reflections on how you’ve changed as a result of raising your Owen — that bit has made me really reflect on what sort of person I might have been if Sophie were not born.

    • Hey Elizabeth – yes, I agree that debating hypothetical scenarios wouldn’t be helpful (I think that’s what you’re saying?). This panel idea doesn’t include what-ifs… would focus on how one feels now, and how one feels looking back. The objective I think wouldn’t be to convince anyone of anything in particular – only to illustrate that things change, people adapt, and there are many ways to experience the path ahead.

      Comes to mind that maybe this doesn’t have to be made for a particular audience. Just might be an interesting documentary or series for anyone interested in these issues.

  5. Thanks so much for sharing this! It’s very in line with my thoughts about our inability to predict what we can cope with. There’s also been so much research recently about our inability to predict what will bring us happiness. I do think having a range of real-life stories would be much preferable to an obstetrician raising his voice and telling me if I miscarried with an amnio I’d be depressed but get pregnant again and have a normal baby. But if I had a child with Down syndrome that’d be a burden I’d carry for the rest of my life!”

  6. Yes. Very interesting. When I was pregnant with my first daughter at 38 I was strongly urged by the OB/GYN to do the amniocentesis test. I knew that there was a risk of miscarriage and at 38 didn’t know if this would be my one chance to have a baby so I declined. He strongly urged me to go to “genetic counseling” which consisted of going to the hospital and listening to someone tell me about all the possible genetic disasters that I could find out about if I did the test. I found it very offensive. I guess I’m not a fan of Eugenics.
    I thought that there should be moms of kids with Down Syndrome and also kids with this genetic issue. Of course there was no other side.
    As it turned out my daughter was genetically “perfect” but suffered massive brain damage during her birth and could never lift up her head, sit, speak or move etc.She was also the most beautiful joyful child and we shared the happiest life with her for 16 and a half years until medical fragility became an issue and she died suddenly in the middle of the night. (we emailed at this time because Elizabeth A. is a good friend and I wrote to you)

    I would be very interested in this discussion.

    Thank you,

    Jody Gelb

  7. I found you via mamapedia, because I do the same thing. I didn’t lose my boys but I feel guilty for beating the odds (my friend with the same dx lost one of her sons). I think such a project/panel is a wonderful idea. I was grasping for any information with my boys’ fetal dx (TTTS). We were sometimes given minutes (selective reduction, amnioreduction, cerclage etc) or days (septostomy) to make decisions, most with poor “if we do nothing” odds. I was prepared for disability, somewhat anticipating it in lieu of “one survivor”. They are now 5 and have nothing that I would pinpoint as caused by our fetal decisions. Please continue this project.

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