Frozen

On a cold night in January I made Chris take me to see a movie in the theater. I was feeling badly- my mood was really low, which was not uncommon. When you’re told that the baby you’re carrying, your first child, a strongly desired baby, will likely die because her kidneys are broken, making low fluid and causing her lungs to be really small, sometimes your mood gets low. In was one of those days and I just couldn’t shake it. Chris asked me what would make me feel better and I told him going to the movies. It was a good idea too even in our hopeful times. Our baby’s death was not a certainty. It was possible she could live and if she did she would be medically complicated needing lots of care. If she survived, a night out at the movies would be impossible, so might as well do it while we could.

“Frozen. I want to see Frozen,” I told him.

“Are you sure?” he asked me. “There are likely going to be lots of kids there.”

I was sure- I wanted a movie that wasn’t real and I’ve always been a fan of kid movies. So after a near miss (the first movie theater we went to had lost power), Chris and I found ourselves walking carefully across an icy parking lot to the theater. He held my arm the elbow as I maneuvered my thirty two week belly around.

“I can’t fall!” I said to Chris almost jokingly. “We’re not monitoring!”

In pregnancy, if you fall, especially in the third trimester, it’s standard to be seen in the hospital for some monitoring of the baby afterwards- to make sure there are no contractions or signs of a placental abruption. We had had to make some difficult decisions regarding monitoring of our baby. With no fluid, there was a great risk for stillbirth. The baby’s heart rate could be monitored for signs of distress, but it’s an inexact science and most stillbirths in these circumstances happen practically in an instant. We had the option of being admitted from the diagnosis at 27 weeks and monitored 24/7 or we could do weekly (or any other chosen interval) monitoring or we could do no monitoring. Choosing monitoring meant we were willing to have an emergent c-section- potentially affecting my future fertility- and allowing our baby to be born prematurely. We made a highly researched and educated decision (met with many specialists) that our baby had the best chance of life if she was born after 34 weeks. We chose no monitoring until then, recognizing if she had distress before then we would lose her. Upon admission we would take no chances and I would be admitted for 24/7 monitoring. So at 32 weeks, if I fell, I would have to decide whether I’d want to break that plan and be monitored, risking early delivery if there was distress. On the flip side, if there was distress, we wouldn’t know about it and my baby could die inside me.

“No falling!” Chris assured me as he gripped my arm tighter. The ground glistened with black ice. We slipped and slided with several close calls but made it safely into the theater. I watched Frozen and was delighted.

When Mabel died, my family came for her services. I found a little joy in the innocence that was my niece. At 3 years old, she was rightly obsessed with Frozen. She would sing, somewhat unintelligibly and very much off key, the words to “Let it go” and dance around the living room. She built her very first snowman (a big deal for a kid who has only grown up in southern California) and named it “Snowloff.” In the weeks that followed, long after my little niece left, I found myself saving “Let it go” to my playlist. I’d sing along to the lyrics in my somewhat unintelligible and very much off key voice:

“Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know!”

A perfect anthem for my grief.

This week I went clothes shopping. A secondary gain since my daughter died (I hate that term- is there a better one? An unintended benefit?) is that I’ve lost some weight. Extra time on my hands and needing an outlet for my anger and grief has brought me down below my pre-pregnancy weight. I know I am fortunate that this happened this time- in the past I’ve been a very emotional eater and gained when I was down. Now I’ve found that I don’t fit into my clothes. So I finally put the hopes of a future pregnancy aside and decided to invest into some clothes that fit. I needed to look somewhat professional in pants that weren’t super baggy. A quick trip to Kohl’s and I found some duds that fit the bill. As I was headed to the check out, a sweater caught my eye. I had wandered past the juniors department and just kept staring at this one sweater. I went up a size, figuring the juniors sizes would be ridiculously small and tried it on in front of the mirror. I was smitten.

photo (37)

I like warm hugs

Chris rolled his eyes when I showed it to him at home. He said “o-kaa-ay” in that two tone mild sarcasm when I put it on to wear it out to the movies (now with no baby, we have the freedom to do so whenever we want). But I told him in the car how when I wear this sweater I think of Mabel- pregnant with her skating across the theater parking lot, my niece singing it before we went to Mabel’s wake and the lyrics of it’s main song that was the anthem to my grief. He held my hand proudly in the theater afterwards.

Mabel has her carrots, but she also has Frozen. I know I’m not alone in these comforts- there are Hugo’s stars and Gideon blue.

Do you have something you wear that makes you think of your baby?  

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Day 27: Express

36+2

Today I have been without Mabel more days than I had been with her. For 36 weeks an 1 day she was safe. Despite the low fluid, my body nourished her, grew her and comforted her. All her needs were met and she wanted for nothing. She was safe. She didn’t need kidneys or lungs- my placenta did all their work for her. Her clubbed feet fit nice and snugly in my uterus. The holes in her heart made no difference- just added to the flow. Her extra chromosome was invisible inside me. I would have kept her in longer if I could. A few days before labor I asked if we could push out my induction for two more weeks and was thrilled and relieved when my high risk doctor and midwives thought it was a good plan. Mabel thought differently. She decided at 36 weeks that she her time inside me was up. I like to think that had she stayed inside longer, she might have died or had such distress I would need a c-section, and so she chose to come on her own so that I could meet her alive and have the vaginal birth I had hoped her.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

Today is 36 weeks and 2 days since that day. She has been out longer than she has been in. In a few more days she’ll have been buried, in the dark of the earth, longer than she had been snuggled in the dark of my womb.

Her memory fades with time. Sometimes it’s hard to believe that she was real- that this really happened. Holy sh*t, I had a baby. I was a mother. My daughter died. I don’t remember what it felt like to be big and pregnant except for the random phantom kicks I still get. They are sparse and an awkward reminder because my baby had no fluid, so she wasn’t the biggest kicker. My pregnancy almost feels invalidated by her death. No one will ask me about my experiences when they are pregnant for the first time. No one will seek my advice. No one will ask for baby clothes hand me downs. And then they’ll have their babies and I ‘ll be even more useless, because though I had a baby I know nothing of parenting a live child- unless of course someone wants advice about taking their baby off life support.  I know a few things about that.

I thought I would do something to mark the day I turned 36 weeks and 1 day without Mabel, but the day came and went. It feels like my due date felt- an end to something that I don’t want to end.

Today I’m sad that the time I will be without my daughter will continue to grow longer and longer but my time with my daughter will forever be shorter.

#CaptureYourGrief

Do you have kids

“Do you have kids?”

I’ve been ready for this question. As a midwife, who chitchats a lot during exams, I’ve been on the receiving end of the questions many times. I remembered being pregnant and thinking how excited I was to finally be able to say yes! Obviously there were many things I was excited about, but having the experience of pregnancy, of birth and of raising kids gave me yet another thing I could relate to my patients about.

When we learned Mabel’s kidneys weren’t working, making her fluid low and affecting her lung development, we were told she might die. I remember asking my midwife, “What do I say if she dies and someone asks me if I have kids???” I couldn’t imagine a more distressing question, but here I am living it. I had one hairdresser and one patient ask me so far. I’ve actually been surprised I don’t get asked more, but I attribute that to the sign I put up about Mabel for patients to read. My responses so far have been “None living,”  which didn’t feel good, nor did it get a good response and “I had a daughter,” which felt okay and got a much better response.

So when I was asked this hallmark question again, I was ready to try a different answer, one inspired by what another bereaved mom uses in these kind of situations.

“I had a daughter but she died shortly after birth.”

“Oh.”

The tone in the room changed. The patient was pregnant and not dealing well with the physical discomforts of the third trimester. When I met her the last visit, I suggested she reframe her thoughts on pregnancy because she had three more months to go and, no, I would not induce her 27 weeks because she was tired. I also had to let her know that by not doing her diabetes screening, she was risking the life of her child. “If you have gestational diabetes and we don’t know it and your sugars are uncontrolled, you could have a stillbirth.” I was exasperated already with what I perceived as her lack of gratitude.

And when we broached the topic of the diabetes test again, which she still hadn’t done, she changed the subject and asked me about kids.

In my head when talking about the diabetes test, I wanted to scream “you don’t know how lucky you are! You don’t understand how precious that life inside of you is! Why would you risk it just because you heard the glucola tastes gross??” But I didn’t. I calmly explained to her the repercussions of refusing the test. And when she asked about my kids, she got more than she was intending. It took all my effort to not say “Listen, my baby died and I would have done anything to keep her safe. Can’t you please just do the test so I can just know that your baby won’t die because you had undiagnosed gestational diabetes?” But I didn’t

I simply said, “I did my diabetes test.” I looked at her with raised eyebrows, my facing telling her that I would only ask her to do what I have done myself.

I’m hoping she does her glucose test. If Mabel can help her see the light, then I’m glad she was brought into conversation. I know this woman has her own struggles, I just wish the glucose test wasn’t one of them.

What’s your response to this question?  What kind of reactions have you gotten?

Finding kinship in the exam room

After I’m done addressing whatever gynecological problem she came in for, she said, “I have to ask you one more question.  It’s personal.” My assistant left and she asked, “Your baby, what happened?”

She had read the sign posted at the front desk.  It wasn’t the question I was expecting.  When a patient tells me they have a personal question, I prepare myself to address things like concerns about how their vagina looks or issues with sex, so this question was a pleasant departure.  I was happy to answer.  I began with her Down Syndrome diagnosis and our decision to continue.  I explained the low fluid and what it meant for her kidneys and lungs.  I told of her birth at thirty-six weeks and her death six hours later from lungs that were just too small.

She listened patiently, attentively and when I was done she told her own story.  The story of her boys, identical twins, who had something called Fragile X.  There wasn’t a term for the genetic disease that causes mental retardation when they were born; it wasn’t until they were twenty-seven that their sister heard about a study that gave their condition a name.  The family soon learned that many of them were carriers of the trait and some even had trait-related symptoms.

I had asked earlier in the visit if she was in a relationship.  It was how I eased into the next question ascertaining whether she was sexually active, a question I wanted address in a respectful way to the woman in her eighties sitting in front of me.  She told me she had been widowed two years before.  Now when talking of her sons, she said one of them died a few months before her husband.  He had been to camp not long before he died.  It was a camp he loved and came home proudly telling stories of his accomplishments.  After he died a counselor for that adult camp wrote her and told her of how her son would make everybody laugh.  Her eyes glowed behind a brim of tears as she told me this.

She lost her husband and her son in the same year and she told me of both during her visit.  I could see that both deaths caused her sadness, but it was the telling of the story of her son that brought her emotions to the surface.

Whether it be a new mom in her thirties or a woman in her eighties who was gifted decades with her child, whether that child was the picture of health and taken suddenly or she was sick with a poor prognosis, this woman was living proof that losing a child under any circumstance is a complicated and long lasting grief.

I often worry that sharing Mabel’s Down Syndrome diagnosis will change people’s sympathy.  That somehow people will value her less because she was given an extra chromosome.  That they think I won’t be as sad because she wasn’t “perfect.”  No one has actually said these things or even given me the impression that they think such thoughts, but I have already prepared my response.  I was ready to love her even more because of her Down Syndrome.  A part of me felt proud that I would raise a child with special needs because I was going to blow up so many stereotypes by showing the world what she could do and how loveable she would be.  I didn’t realize at the time that she didn’t need to live to do just that.  I wish she were here so that she could witness how far she is reaching.

In the examine room, Mabel allowed this woman to share the story of her son.  To let her tell one person how wonderful it was to raise a child with special needs.  To give her the opportunity to comfort another bereaved mother.  To affirm for both herself and for me that no mother should have to bury her child.

The Baby House

It seems sort of ridiculous to have a swimming pool when the house sits on the beach.  For several years in a row my large extended family would gather in the Outer Banks for a week of board games, surf lessons and gin and wine on the deck.  We found a house that was perfect- four stories of bedrooms, game room, Jacuzzi, pool, beachfront- and even a motel next store for the overflow of guests.  Then my generation became grown ups and we did things like getting married.  Our weddings became substitutes for the annual reunion.  Our parents’ generation wanted the fun to continue so they would move the reunion to England or Ireland, trips that we newly minted grown ups could not afford. But this year the Outer Banks trip was going to be resurrected.

We sat around the Thanksgiving table with some second cousins on Skype.  I was visibly pregnant and my cousins were announcing their news about their pregnancy to the relatives who couldn’t make it to Turkey Day.  We all knew that my sister was expecting too and so we joked that we’d have two houses at the Outer Banks this year- the main house and the baby house.  Stick all the screaming infants far away from the elders, so they could have their vacation in peace and quiet.  I looked forward to the trip as the time when I would be introducing my baby to my extended family.

Two weeks before Christmas, my phone rang and I could see it was my second cousin calling.  It was the middle of the day, but I was home on the couch watching tTV because my work had kindly given me some time off when we received the news that Mabel’s prognosis was poor.  When I saw my cousin’s name on my phone, I assumed she had heard the news and was calling to talk.  She is the wife of a pastor, so I feel like she has an almost natural calling to minister as an extension.  When I answered the phone she started talking about the Outer Banks- confirming we were coming.  There would be two houses, she informed me, so we really would have a baby house!  I tried to respond, but I was at a lost for words.  Through tears, I was finally able to say “Have you talked to my mom?”  She could hear the choked back sobs in my voice.  After I explained about my baby’s lack of fluid, her failing kidneys and underdeveloped lungs, I said “there might not be a baby!”

On Sunday we will be arriving in the Outer Banks.  Showing up to this long awaited trip with empty arms will be painful.  Seeing my sister with her baby, the one that was supposed to be Mabel’s playmate, will make my heartache in so many ways.  I asked not to be in the same house as the baby- I had to ask.  I hate asking for things like that because it makes me feel like a jerk (I know, I know, I’m not a jerk.  But admitting that I can’t separate the feelings I have about my baby from the feelings I have about others’ babies makes me feel like one).  I feel like I’ll be under the spotlight while there and ignored all at the same time.  I’m not sure which I’d rather.

I’ve debated not going on the trip.  We decided to drive there so we have complete freedom over our schedule- what we do each day, when we leave.  I want to go on this trip, because, frankly, I feel like I’ve given up enough.  I don’t want to have to give this up too.  It’s not the vacation I want- one where I’d have my baby  (or heck one where there would be no babies)- but I’ve already learned we don’t always get what we want.  If nothing else, it is a week off of work.  There is something that still doesn’t quite feel right about it- vacationing and having a good time, all when my baby died.  But this is life; I learn how to do the normal things.  I will learn how to vacation.

So in a few days we go to the Outerbanks.  I will stay in the baby house… without my baby.

How’s your son?

“How’s your son?” I asked her over the phone, after I answered her questions.

“He’s good!”

“He was diagnosed with Down Syndrome, right?”  I remember seeing her postpartum, standing by the warmer in the NICU.  She had declined prenatal testing because it wouldn’t have changed how she felt about the pregnancy.  When her baby was born, the pediatricians thought he had several characteristics of a baby with Down Syndrome, so he was in the NICU for evaluation.  She was a bit unbelieving at first, not ready to fully accept the diagnosis until the test results were in.  I knew they’d both be fine.  She came from a lovely extended family that took care of each other.  That baby was lucky, I had thought.  No one rejoices at the diagnosis of Down Syndrome, but I knew that baby was going to be loved on so much.

“Yeah…”

“Did you know, I had a baby with Down Syndrome?  She didn’t make it though.”  I was able to say the words easily.

“Oh no! I’m so sorry!  You were able to make it to term?”

“Yeah- thirty-six weeks.  She was born in February.”

“Oh no, what happened?”

I explained that we knew she had Down Syndrome since 13 weeks but continued on.  I told her about the kidney problems and the low fluid making her lungs underdeveloped.  Ultimately she died because her lungs were too small.  She told me how sorry she was and that she’d pray for me.  She marveled at how she felt like she’s hearing about so many more people having babies with Down Syndrome. I told her I thought a lot about her and her son throughout my pregnancy.  The emotions I had in the beginning- grieving the diagnosis at first- and then the preparations I did.  I told her how amazed I was that she did all that while having a brand new baby.

“How is your son?” I asked, knowing that 50% of children with Down Syndrome have heart defects and many have other birth defects and later health problems.

“He’s good! He’s got nothing major- just low muscle tone. He’s teaching himself to crawl,” she described her one year-old’s slightly delayed progress.

I asked who her pediatrician was. “Is he in Birth to Three?” referring to the early childhood support program in our state.

“Yup!  They have therapists that go to the day care and to the home.”

I told her about the Down Syndrome Comprehensive Clinic, and she took the information eagerly.  I told her I was glad her son was doing so well.  She thanked me and said she’d be keeping me in her prayers.

I felt good about it all.  We shared something special.  I wish I could have been the woman on the other end of the phone- the one whose baby lived- but I nonetheless felt good.

Meeting with the geneticist

I met with a geneticist yesterday.  After getting Mabel’s autopsy report, I still had some lingering concerns.  I loved my daughter so much and it pains me that she had to have once ounce of suffering.  I don’t want her siblings to have to face the same battles.  Knowing what I know now, if there is anything I can do to prevent or prepare, sign me up.

The geneticist is an older man with kind eyes and a gentle voice.  We met with him once during pregnancy to give us some insights on what to expect in pregnancy and beyond with a baby with Down Syndrome.  He told us many reassuring and many scary things in a soft voice.  I liked him.

He had reviewed the autopsy with the pathologist and they had done all sorts of research.  Mabel had cystic dysplasia in her hypoplastic kidneys.  These defects, though uncommon, are seen at a higher rate in the Down Syndrome population than the average population.  He was saying that Down Syndrome is the likely explanation.  If this was seen in a child without Down Syndrome, there could be a small concern that there is a possibly hereditary condition- mulitcystic kidney disease.  If that were the case there would be a 5-10% chance of either a parent (me and Chris) or a sibling (Mabel’s future brothers and sisters) would have the condition.  That said, even if that were the case, it would be extremely rare to have a case as severe as Mabel’s.  This is not the likely scenario, but if Chris and I decide we want even more reassurance we can each have our kidneys ultrasounded to ensure we don’t have multicystic kidneys.  My general impression is that he thought it wasn’t necessary but it was an easy reassurance to get if we wanted.

I don’t know whether we’ll decide to further testing or not.  I left the meeting feeling comfortable that Mabel’s life-limiting issues were related to the Down Syndrome, which was a random event.  It really hit home that what Mabel had and what we experienced as a family, was like being struck by lightening.  Literally.  I already calculated that the chance of me having a baby with Down Sydrome with a kidney problem is 1/100,000.  The risk of that kidney defect being fatal?  Extremely rare- no numbers available.  The chance of being struck by lightening in the US in a year is 1/500,000.  I think it’s safe to say I have a better chance of being struck than this happening again.

This doesn’t mean that I can see worry-free pregnancies in my future.  This experience has taught me that nothing is certain.  I’ve lost that sense of security.  I’m ok with that, a little sad, but ok.  I accept it.  I want others to understand it.  If you got struck by lightening, wouldn’t you be scared of thunderstorms?

Oh and as I was leaving, I told the geneticist to say hello and thank someone in his department that was kind to me in pregnancy.  He said “you know she’s pregnant?”  I did not know.  It’s wonderful for her.  I thought about how hard it must be to be pregnant while working with pregnant women and all sorts of difficult news regarding genetics.  When he said that, I thought both how wonderful and how hard.  I also thought that I wish he kept that news to himself.  I didn’t need to know.