Sunday, June 1, 2014

Because my daughter could have died alone

This post is the one I don't want to spend the weekend writing.  I thought of funnier topics and cuter topics, but this is the post I need to write.  This post is part of Blogging for LGBTQ Families Day sponsored by Mombian, but today I'm not talking to my usual audience of friends, lesbian moms, feminists, and fellow travelers.  Instead my imagined audience for this post is someone like Kendra, who blogs at Catholic All Year.  I hope she won't mind a shout out (and just a note that this post contains no cursing, no explicit content, and a minimum of typos).  I thought of Kendra when I began this post because she is an intelligent and thoughtful blogger who engages with political and social issues, and also finds gay marriage in my words: morally, culturally, and theologically abhorrent, and in her words "immoral" and "sinful."

This is our story:  I married B in a civil ceremony at the courthouse in D.C., attended by our parents, and occurring two days after we found out our first attempt at IUI was unsuccessful.  A month later I was pregnant.  A few months into my pregnancy (2nd clinic IUI, anonymous donor from a bank), we made the obligatory trip to a family lawyer.  In most urban areas you can find a small cadre of lawyers specializing in gay families and you find them by asking around or googling.  I believe we paid $2,500 for a 2nd parent adoption and an additional $1000 for estate planning. In Maryland, our part of the process included a doctor's note, some essay questions, letters of support from friends and family, and pictures including a required picture of our front door.

While we were happy with ourselves for being diligent and starting the process early, the legal reality was that no guardianship or adoption paperwork could be filed before a living baby was born.  I could make my belief that this baby belonged to both B and me and that we would parent the baby together known through unofficial channels, but we could not formalize B's relationship to our baby until after the baby was born.

At the time, that didn't seem like a big deal.  Life continued, lots of sleeping, trips to IKEA, inhaling chicken and bulgogi beef, picking up extra work to earn extra money, procuring my great grandmother's rocking chair.  Throughout I was nervous but healthy, as was B.

Then, an ultrasound showed that baby's previously normal growth had slowed: monitoring.  And long after my nausea had subsided, I had some episodes of violent puking (in the bushes outside my classroom and in a plastic bag in the car and on the sidewalks of my neighborhood where only junkies puke).  Not great, but I knew that puking could be a normal 3rd tri thing.  Then were some headaches so bad that they made me cry, but my screenings and blood work were okay, so I went about my business.

We hit week 27 and I was headed out of town for one final conference.  I went in for my regular checkup: blood pressure pretty high, concerning level of protein in my urine - for the first time, blood work ordered.  The next day I was prepping for class and one of the midwives called to request my presence at L&D - immediately.  The blood work had shown significantly raised liver enzymes.  "But I have a class to teach.  I don't have a bag packed." I negotiated for two hours, hustled over to my classroom to put a sign on the door, burst into staff meeting crying, and called B. to come get me.

At the hospital we went immediately to the MFM practice.  I had previously met the doctor there when he brought some med students in to observe my impressive fibroids.  Extended and anxious scanning, discussion of IUGR, a steroid shot, and the doctor: "You have severe preeclampsia.  We need to prepare for you to have this baby in the next 48 hours," he said pulling a sad face.

On L&D we sat on a bench in the hall.  They brought a woman through as she screamed that she was losing her baby. Our midwife waved from behind the nurses' station, but didn't come out to greet us (still bitter).  My blood pressure was 160/100.

The night in the hospital was long and loud.  The nurse's default was to turn up the baby's monitors as loud as possible so that it sounded like I was in my own womb, women screamed endlessly, my blood pressure monitor alarmed every 15 minutes because my pressure was too high and no one came to turn off the alarm.  But I had B there with me, sleeping fitfully, together.

A second night B went home to stay with our freaked out dogs.  A nurse told me she wouldn't be able to come back until visiting hours started again the next morning.  "We're married, we have a certificate, she's my next of kin."  The nurse said we could get it sorted in the morning.  B remembers that the visitors desk swapped her "visitor" wristband for a "family" wristband that gave her access to L&D 24 hours a day without any hassle.

Despite the frustrations of the hospital, I started to simply exist.  The days blurred quietly together with tests and scans and quiet.  I read steadily through the collected Sherlock Holmes stories.

B and I couldn't discuss the what-ifs, we lay in my little hospital bed and tried to imagine our baby's future.  I had a half-waking dream about a little boy and a little girl on a beach, and I felt a wave of peace.  We had already chosen LB's first and middle names after her great-grandmothers, but I told B that if they baby was a girl and she lived, we should give her a second middle name, Grace, after the Our Lady of Grace statue in the hospital lobby.

Time felt soft, I was floating and waiting.  Baby stayed strong.  And then her heart rate was alarming.  And she went off the monitors and couldn't be found.  The head resident efficiently and calmly, too calmly, pulled the portable ultrasound into the room.  She was so calm that I didn't know when she found the heartbeat, and asked several minutes later "is she there?" I called B and asked her to leave work and come sit with me.

B talked to our lawyer, who said she would drive up to Baltimore after the baby was born with our paperwork.  "What if something happens to me during the birth?" I asked a nurse.  "You'll be okay," she said.  It wasn't a question I asked with fear for my own mortality, it was a technical question.  "What if something happens to me?  They'll put our baby in foster care," I said to B.  "We have a lawyer, if there's a problem your parents will come down and sign over custody, it will be okay." B understood, but we didn't have much of plan, and I couldn't dwell on the future.  When I did, I was forced to consider a future in which our baby did not live.

For the first nine days in the hospital, I felt okay.  On the 10th day, I did not.  I saw floaters before my eyes, that I did not report.  I felt off.  My MFM popped back in with the verdict: rising liver enzymes, stubbornly high BP despite major meds, baby not growing, and now dropping platelets.  "It's time, you'll have this baby tomorrow morning."

B stayed with me that night and we cried and imagined our baby.  Surgery prep started early, but we were already awake.  A nurse came in to start the magnesium sulfate, which I describe here.  Mag acts as a muscle relaxant, and after I stopped sweating and puking bile, I felt very calm.  B put on her gown and held my hand as I was wheeled to the OR.

The anesthesiologist was waiting for us, he asked me to sit on the table and put both my arms around B's shoulders.  "It will feel like bee stings" he said.  I was too relaxed to talk, but I thought, "I've totally got this!" having been stung several times by a wasp in my office with no ill-effects.  I lay on the table, relaxed and unable to see without my glasses.

I'm sure B was trying to crack some jokes, but I don't remember much until there was a flurry of movement and someone said "You have a daughter."  "Is she alive?" I asked.  "Yes, Yes" and a tiny pink bundle was flashed somewhere near my face.  I thought I heard a tiny mew.  "She's breathing on her own."  B ran back and forth between me and LB(G) managing to snap the first baby-in-a-plastic-bag (to conserve body heat) photos.

As the NICU nurses prepped LB, my team got louder and more energetic.  "Blood, I need blood!" became "WHERE'S THE DAMN BLOOD!"  Muttering, orders, cursing.  "Okay, we need to put you under, okay?  B, you'll need to step outside after she goes under." I tried to nod, thinking "yes, I don't really want to be awake for this." I breathed as deeply as I could, trying to make it go as fast as possible.

The next five hours or so are not my story, but what has been told to me.  Medically, my low platelet and fibroids combo had complicated delivery, and led to extensive bleeding requiring extensive surgery.  Thankfully the replacement blood did arrive in time.  Meanwhile, B was sent back to my room to wait with a friend who had just happened to come visit us.  She prayed the rosary with a Quaker, and sweated through a Code Blue not knowing that it wasn't me.  A nurse came in and sent her up to the NICU to see LB.  Born at 29weeks, weighing 2lbs 3oz, LB was holding her own.  B kangarooed her (I would share the lovely pics, but B isn't wearing a shirt), and took more pictures.

LB's first hour in the NICU
I came to around noon, looking and feeling rough.  It was hard to remember what had happened, but I did remember "you have a daughter," and I felt waves of joy and love.  A nurse, one of the ones who was both kind and efficient brought me a gingerale with a straw and it was the best thing I ever drank. B came bouncing into the room flashing pictures and telling me all about the NICU and about how she held LB.

In 1995, Julie and Hillary Goodridge had a daughter:

"When their daughter was born, she breathed in fluid and was sent to neonatal intensive care. Julie had a difficult caesarian and was in recovery for several hours. Even with a health care proxy, Hillary had difficulty gaining access to Julie and their newborn daughter at the hospital."[full text here]

As Julie lay in the OR, Hillary sought to see their daughter in the NICU.  She was turned away because  she had no legal relationship with the baby.  She waited until shift change and lied to a new nurse, saying she was her baby's aunt, and was allowed access. Hillary and Julie became the lead plaintiffs in the case Goodridge vs. Department of Public Health, the case that brought gay marriage to Massachusetts.

If not for Hillary and Julie, what would have happened to our LB?  Would she have laid alone in an isolette while B fought to get to her?  Would she have been denied that time sleeping against her mother's skin?  If things had gone worse, would she have died never being held by someone who loved her?

"We're married" were magic words for us, words that opened doors and produced wristbands.  These are the stories of unfortunate couples who possessed only lowly civil unions: Brittney Leon and Terri-Ann Simonelli, Janice Langbehn and Lisa Pond, Kathryn Wilderotter and Linda Cole, and Bill Flanigan and Robert Daniel.  This latter case is particularly sad, because Robert died alone after Bill was denied access to his hospital bed.  In each of these cases the couples were in a legal domestic partnership.

The sad fact is that "we're in a domestic partnership" is not a magic phrase.  Say domestic partnership and very few people know exactly what rights you possess. Say marriage and everyone knows you should be at your spouse's bedside.  In 2010, the federal government offered additional guidance to hospitals receiving some types of federal funds, telling hospitals that they must allow patients to designate their own visitors.  That's a step forward, however, at least one of the cases above occurred after 2010.  The workers at the hospital front desk don't necessarily follow changes in federal guidance, but they do know what marriage means.  Marriage means you get the bracelet.

I am not equipped to speak to matters of theology.  I have freely chosen not to know what, if anything, exists after this life.  I am living this life with love: the intense love I feel for my wife and daughter, the joy I feel for my friends and coworkers, for clerks and bus drivers and randos, the perplexity and fascination I feel for those who claim to love me, but would deny my daughter a mother's love.

as a big girl

Thanks to Mombian for hosting the 9th Annual Blogging for LGBTQ Families!



4 comments:

  1. This is the most heart-wrenching account in argument of marriage equality (and both parents recognized as legal parents) that I've ever read. How can any woman possibly read it and walk away NOT supporting legal marriage equality? I instinctively start to cry when I read about the possibility of a baby not being with the parent and possibly dying....Preventing a family from being together is not love at all. I hurt for the fears you had to endure during such a terrible/wonderful time.

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    1. oops....I (Kari) must have been signed in as Debbie when I commented. I'm sure she feels the same way though!

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  2. Thanks Debbie, your comment means a lot to me! In general, things are on such an upswing in terms of gay rights that I think many of us (me and B included) don't want to focus on our vulnerability. It's understandable, but I don't want to forget what could happen, and what has happened in the past.

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  3. Thansk Mary That is interesting and helpful guidance.It is very important to learn the right ways for it's installation and usage...the technology is advanced and need expertise to be family lawyer,divorce attorneys, foreclosure defense..Ok //hoyasa

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