Queer families, neonatal ethics, and why we don't know anything about our rights

http://ellen.warnerbros.com/2012/03/carrie_and_rebeccas_emotional_story_0309.php

This heartwarming clip has been making the rounds on the internets.  Ellen interviewed this (very sweet) lesbian couple, who are in danger of losing their home to foreclosure for all the reasons that so many families are struggling-job loss, medical expenses, past optimism, etc.

So Ellen gave them one of those oversized checks to help them out their debt hole and it was a feel-good moment.  Except that, as a lesbian mom of a NICU baby, I was struck by their retelling of their daughter's first hours.  Gestational mom had to have an emergency c-section because the baby was in distress.  They moved so fast that they were not able to give her an epidural, spinal, or general (dear God!) and after the baby was out she passed out from the pain.  The baby was thankfully viable, but needed some fairly urgent medical treatment.  And this is where I got interested.  The non-gestational mom (and I'm just going on what she reports on the show) says that the doctor in the NICU told her that he had determined the best course of treatment for the baby, but she could not consent to the treatment since she was not legally the child's parent or guardian.  And so, the doctor would wait for the gestational mom to wake up and give consent.  According to non-gestational mom, "Thank God she woke up in time."

The impression given in this video is that if gestation mom had not been able to consent to treatment, the baby could have been left to die, and that is simply not true.  Neonatal ethics and law in the United States  err on the side of treatment, and if there is no one available to give consent, doctors have both the right and the responsibility to go ahead and treat.  Really the only time doctors can withhold treatment is when a baby is so early or so sick that their condition is judged hopeless.  Even in these cases doctors often follow the wishes of the parents to withhold care or treat aggressively.  So there is no chance in hell that a doctor would refuse to treat an infant with a good prognosis just because her mother was unconscious, unless he/she really wanted to be sued/reviled/and lose his/her medical license.

So why did non-gestational mom think that the baby might be refused treatment?  It's possible that non-gestation mom is a deliberately inaccurate narrator.  Maybe she was just trying to heighten the drama of the situation.  It seems more likely that she simply did not understand the rules of the NICU and the doctor attending the baby did not explain the situation clearly.  It is a terrible thing to let a parent think that her baby might die because of factors outside the parents control.  If the non-gestational mom was given this impression then the NICU doctors failed to do their job.  The doctor should have said, "we make every effort to get consent from a child's legal parent or guardian before beginning treatment, so we are going to wait a little while and see if your partner wakes up, but you should not worry about your daughter.  Your daughter will receive the same standard of care as any other baby here, and if it becomes clear that we need to act before your partner wakes up we will do so."

I had Ladybug at 29 weeks.  Most of the medical professionals Badger and I interacted with were both highly competent and very nice people, who wanted only the best for Ladybug.  However, the present reality for queer parents seems to be that no one knows what the hell the rules are, and NICU's often don't understand what gay parents need in terms of information and support.  Can a gay-married spouse who is also the non-gestational parent make medical decisions for a child-probably not absent a second parent adoption/guardianship agreement.  However, most gay parents seem to think that a marriage certificate solves a lot of these problems.  When do guardianship agreements kick in?  We were never clear on this.  In our case, because LB came so early, we had not signed our guardianship paperwork (or I should say, I had not signed), but I was never clear on whether this paperwork could be completed before the birth of the child.

Here in the United States, all of these issues are made more complicated by the differences of state law.  Fifty sets of state laws makes it very difficult for families like ours to share information and learn from each other on the internets.  Local LBGT lawyers are both the solution and the problem for queer families, and that will be a topic for an upcoming post.

One inclusive form at a time

The Family Equality Council has a new program to encourage same sex parents to take photos of forms that refer to mother and father and send them in to FEC.  I wish FEC was thinking a little more broadly, since parent/parent doesn't seem that much more inclusive to me than mother/father.

In any case, this program encouraged me to send the email below, which I've been meaning to send for months.

Dear [Heath care provider name]

I would like to know if the [name] clinic would alter its paperwork to make it more inclusive of varied family structures.  Currently the paperwork ask for information about "mother" and "father."  As you know, these categories exclude our family.  The current forms do not reflect the legal realities of [our state] families, as two moms or two dads can now be listed on an [our state] birth certificate, as is the case for me and [Badger].  Perhaps more importantly, the forms do not reflect the social and cultural realities of many NICU follow up families.  Many, perhaps a majority, of [our city] families do not consist of mother/father/child, rather, children are being raised by stepparents, foster parents, guardians, and kin.  

Given these realities, it seems imprecise to limit a caregiver's relationship to a child to either mother or father.  I would suggest removing the mother and father designation, and instead asking for "name" and "relationship to child." Since the child's genetic history may be important to understanding some conditions, an additional box asking about the caregiver's biological relationship to the child could also be useful.

The Family Equality Council is currently involved in a campaign to address exclusionary forms.  I'm providing a link below that gives additional information.

http://www.familyequality.org/news__media/2012/03/12/1189/release_family_equality_council_announces_snap_it_send_it_campaign



Best,
Mary