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.

Who needs a baby shower?

This past weekend was supposed to be my baby shower.  It was going to be a really cool baby shower- a bit non-traditional.  It would be an evening shower at a local vintage clothing shop, with dress up games.  Unique.  Fun.  Totally me.

 

When we were first diagnosed with ologohydramnios, I had Chris put away all the baby stuff (what a sweet man).  I told my sister and my cousin not to send out invites for the shower.  Then two weeks later, after one ultrasound where the doctor said the lungs “didn’t look hypoplastic,” I started feeling a little more optimistic.  There was a moment or two that I thought maybe I could still have a shower?  Maybe?

 

After all our research and plan-making, it became clear to me that I didn’t think a baby shower was a good idea.  I can’t even look at baby stuff right now without a pit in my stomach.  I am so sad I’m not having a baby shower.  A shower makes my pregnancy real and a time for celebration.  Not having one makes me feel like my pregnancy is not valid or nonexistent even. It hurts.  Its my choice not to have one, but I hope people also recognize that I’m still pregnant and this baby is real.

 

My sister, who lives in California, was flying in anyways for a combo work-week in NYC and what was to be my baby shower this weekend.  Though no baby shower was on the agenda, she came up for the weekend anyways.  And she and my cousin reclaimed the day and took me to the spa instead.  If I couldn’t have a baby shower, the spa was truly the next best thing.

 

I felt truly spoiled- four treatments (pedicure, massage, facial, makeup) and lunch.  We spent the day sitting around in our bathrobes.  I seemed like I was busting out of my bathrobe, while my sister sat comfortably in hers.  I figured I am just more pregnant than she is (she’s due two months after me).  After my massage therapist tracked down a larger robe for me and we reassembled, we discovered that I had been in a regular bathrobe and my sister was in a 4XL.  Hah!

 

This is a very gracious thank you to the both of them.  My sister, pregnant herself, has been super supportive.  She calls when she knows I have ultrasounds.  She’s heard me cry over my fears- including ones from the beginning that seem small now.  She was very sensitive when telling me she was pregnant.  She told me in a way that allowed me to be happy for her and recognize that our experiences would be different. And that it might be hard for me at times because she is growing a healthy baby (thank goodness) and I am not.  I can not express how appreciative I was of simply how she told me.

 

My cousin, too, has been a big source of support.  From the beginning she has been unafraid to talk about whatever is happening with my pregnancy.  Some people hear Down Syndrome and don’t quite know what to say.  With the new diagnoses of oligohydramnios, kidney problems and potential lung problems, people are at a loss of how to respond.  Many try to give words of encouragement, which are so very well intentioned but often fall flat.  My cousin asks questions- which is helpful.  I usually just want to talk about things, to explain how hard this all is.  And she can take a step back when I’m sick of talking.  She has also been my backup ultrasound buddy.  My husband works an hour away from our ultrasounds, so coming to them all often entails taking a half day off of work.  We try to work around his schedule but with weekly ultrasounds in addition to meetings with specialists, sometimes it’s just not doable.  And I refuse to go to ultrasounds alone- just in case I get more bad news.  That’s where my cousin comes in.  She came for a follow-up ultrasound for the clubbed feet.  She was there at the ultrasound when the oligohydramnios was first discovered and came with me to the hospital while my husband drove to meet us.  She came with me last week and listened to me cry on the sidewalk afterwards.   She also lets me shower at her house after bootcamp in the morning (its my latest exercise/anxiety release. And I wouldn’t be able to do it if she didn’t live so close and let me mooch her hot water). Plus she brings me ice cream (the good kind) whenever there is a new complication (did I mention how much I like ice cream?)

 

So ladies, thank you.

Of weddings and distractions

I went with my friend for her hair trial for her wedding last week.  Her wedding is in April, the month after my due date and it’s been something I’ve been really looking forward to.  My husband and I are both in the wedding party.  When I was early pregnant and they got engaged, I pictured asking my mom to come hang with the baby while we went to their wedding.  When we first got the Down Syndrome diagnosis and they had asked us to be in their wedding, I pictured bringing our little carrot to the hotel to get ready- taking breaks from makeup application to breastfeed and sneaking time in before the reception to pump.  I pictured bringing my baby is his/her little casts for the clubbed feet and the gaggle of girls cooing over him/her.  This image helped me visualize life after birth- life with a baby- life with a baby with Down Syndrome.

 

I got a kick out of trying on bridesmaids dresses 20 weeks pregnant, trying to guess what my size would be one month postpartum. How big my boobs would be.  Thinking about how to get the dress down to pump.  Worst case, I thought about my baby being in the hospital preparing for surgery or something- but I viewed it as a temporary thing.

 

Her wedding is still something I am so so excited about.  I really like talking about it- the preparations, the ups and downs of planning.  It reminds me of planning my wedding (just over a year ago), which I loved. It reminds me of a time when I was really happy and excited for the future.  I’m riding on the coattails of her excitement.  When we talk about her wedding, I kind of forget about what’s going on with me.

 

Now if I think about her wedding, I’m envisioning a different scenario for her wedding.  Maybe there is no baby.  The wedding, though very different than I imagined, might be a distraction from my grief.  Might actually get me out of the house.  Might remind me that not everyone has kids and look at how much fun they’re having!  Might help take my mind off of me and think about someone else for a bit.

 

I know there’s a chance I might not be able to go to the wedding at all, if my baby lives and is sick and needing me.  It’s weird, but that might be something to wish for???

 

She’s using the same hair stylist I used for my wedding and so it was fun to go with her to the trial. She looked great!  I kept thinking she looked like a model once it was all done.  And thebride-to-be seemed to like it too- which made me especially happy because I recommended this stylist.  It was all lovely.  Though the night ended with one last reminder of what is to come.  On our way out the stylist said “Oh the baby will be a month old when at the wedding! I’ll get to meet him/her!.”  I smiled and responded “Yup.”

 

This is the stuff I’ve been trying not to let myself think about.  What happens after.  People I will see, who will ask unknowingly about the baby.  How do I respond? How do I respond if my baby dies?  No one feels good talking about a dead baby.  How do I respond if my baby lives and is really sick?  Do I lie and just say fine?  Often people ask questions to be polite and aren’t prepared for the real answer.  Some people would honestly like to know.

 

I know I don’t need to have answers right now.  I know I don’t even need to think about it right now.  Frankly, I’d prefer not to think about it at all.  But I’m just constantly reminded that this is something I will have to deal with.

 

Distraction.  It is a tool I had been learning to cultivate before my pregnancy to help deal with my anxiety.  Now it is something I use everyday. Being a part of my friend’s wedding is a wonderful distraction.  It doesn’t change reality but it allows me to experience feelings I would have otherwise forgotten.    I encourage others to practice the art of distraction, because you never know when you’ll need that tool.   I used it the other day with a patient who had a terrible needle phobia.  She needed a procedure and I went with her to support her.  I used distraction to help keep her mind off the upcoming needle.  She was going bridesmaids dress shopping over the weekend and we used that as a shared experience- I talked about my friend’s wedding with her.

 

The only downside of distraction is temporary.  It will be interrupted with reminders of reality.  The goal is to take those reminders in stride.

Jealousy vs Gratitude

“The things you take for granted, someone else is praying for”

I saw that quote a few times on facebook today and it just hit home.   Don’t know who said it, but it applies. It really applies.

Things I wish for that others may take for granted:

  • Waiting for my prenatal appointment without looking at the other pregnant women with jealousy
  • Going to an ultrasound with excitement rather than anxiety or dread
  • Responding to people’s comments on my pregnancy in a positive way rather than changing the subject
  • Being able to coo whole-heartedly at someone else’s baby
  • A (somewhat) worry free pregnancy
  • A baby shower
  • Shopping for baby clothes
  • Putting together a crib
  • Knowing that each discomfort of pregnancy is really something I’ll be rewarded for in the end with a healthy baby
  • Looking forward to labor as the last challenge before holding my baby rather than the last challenge before knowing my baby’s fate
  • Skin to skin after birth
  • Not worrying about a c-section
  • Not thinking about stillbirth, funerals, or deciding about cremation versus burial

Things I might be taking for granted that others may be wishing for:

  • The chance to be pregnant and not struggling with infertility
  • A loving supportive husband who views are in line with mine
  • Stable finances
  • My own good health
  • Not being on bedrest
  • A workplace that is supportive of my new needs- time off, reduced schedule, time for appointments.
  • A team of midwives who go the extra mile (this deserves another whole post)
  • An MFM team that is honest and allows me to be part of the decision making
  • My whole OB team that was positive about the DS diagnosis (no pressure to terminate, encouragement to breastfeed, etc)
  • Family and friends who check in, keep me distracted, allow me to just talk about it all.
  • An active baby

Learning how to cope

We made it through my first goal.  Get through Christmas.

I’ve taken some time off work, which has given me the chance to think, adjust and move forward.  I had a week at home alone and then this week, Chris was off work and we also spent time with my family.  All this time has made me feel more ready to get back to some sort of normal life.  It’ll be a new normal, but it’ll feel like some sort of life again.  I’ve reached the point where I think being at home is no longer very helpful.

The hardest part of figuring this all out is trying to come up with a coping strategy.  Do I have hope?  And hope for what?  Hope that this baby will live?  Hope that this baby will come home?  Live a life off a vent?  I feel like those are hard to really conceptualize.  In general I tend to be someone who prepares for the worst, so that I can be ready if it happens.  It may not happen, in which case I’ve worried for nothing.  But its how I’ve operated in the past and its worked in some weird way for me.  So I have spent this time thinking about losing the baby- what it will be like, how I will cope.  And if I don’t lose the baby, how much more wonderful that will be, right?  No one can paint a picture of the future for me- my case is not common.  I have helped people through loss and its the only scenario I can accurately picture.  So I am grieving, preparing to lose this baby.

I’m terrified to return to work.  I’m still emotional and don’t really know when a crying spell will hit.  I just hope when they come, they are not too public.

Finding peace with a heavy heart

I knew better than to go to an ultrasound alone.  Chris had a meeting that came up, but luckily my cousin works a few minutes away and so she joined me for my scan last week.  In my last post, I had said I was worried about growth and bowel.  Good news is growth and bowel are fine.  Baby is in the 57%, which is about 2lbs 4oz.  No issues with the bowel.

But we have a new set of issues.  As the sonographer was scanning, she got to a point where she was taking a measurement- I thought for some reason she was looking at the ureters (which had been dilated in the past)- so I asked her what she saw.  She told me she was measuring fluid. “Oh, I forgot about fluid! How is it?”  I asked.  Fluid wasn’t even on my radar as a potential problem.  It was low. 1.3cm total. I started crying.

I’m familiar with what fluid should be- I know at term it should be above 5cm and if its below, then we induce.  I had no idea what it would mean at 27 weeks.  We waited for the doctor who at least alleviated my first fear- I was worried we’d have to deliver.  I wasn’t ready!  First we had to figure out the cause.  Our best guess was that maybe I had been leaking fluid.  I didn’t think I had been- but who knows, maybe I was that midwife who didn’t even realize her water was broken.  So off to the hospital we went.

Once in triage we determined my water had not been broken.  My  midwife and the MFM (Maternal Fetal Medicine) doctor there went through other scenarios.  It could be uteroplacental insufficiency- they placenta is not working well, not feeding the baby.  But the baby was a normal size and they checked the blood flow from the placenta to the  baby, which was also normal.  It could be the kidneys.  Maybe I was dehydrated.  So the plan was to admit me, aggressively hydrate (IV, lots of water to drink), bedrest and re-examine in the morning.  Baby was looking fine on the monitor, so there was no immediate concern.  I got steriods to help with lung development in the event I had to deliver early.  The MFM doc talked to me about some potentially scary stuff- but I was convinced I could hydrate and things would be better. So far we had passed all the big landmarks- normal level II, normal fetal echo.  I was optimistic.

After 24 hours, and I think 7 liters of fluid later, my ultrasound showed essentially no change in fluid.  They took a closer look at the kidneys and they looked small- one was echogenic (sign of damage).  There was no urine in the bladder or the ureters.  The MFM doc confirmed my worst fears- the prognosis is poor.  We went on to meet with a neonatologist, a pediatric urologist and a pediatric nephrologist. After meeting with everyone, this is what we know now:

Kidneys

In utero, the baby’s kidneys aren’t working and they are atrophic (small).  The placenta is taking care of the kidneys’ usual function, so baby doesn’t need them now.  But s/he does after birth.  There might be some function- its just unknown until baby comes out and has to do it on his/her own.  This is an unusual presentation of kidney problems in a baby with Down Syndrome, but there is no other explanation, so they think the heart of the problem is chromosomal.

Lungs

A baby’s lungs need fluid to grow and expand.  Because there is such low fluid, the baby’s lungs will be small and may or may not function on their own.  We don’t know how long the fluid has been low- it happened sometime between 22 weeks and 27 weeks.  The earlier the low fluid, the poorer prognosis.   Low fluid at 27 weeks does not bode well, but it may have been low even earlier.

Fluid

Low fluid means baby has no cushion- s/he could very easily have a cord accident (push on the umbilical cord and cause stillbirth.  So the risk of losing this baby on the inside is high.  Also the fluid doesn’t allow the baby to move and stretch in the same way, which causes Potter’s Syndrome- some unusual features- limbs can be contracted (we already know there is clubbed feet), and there can be distinct facial features (low set ears, flattened nose, epicanthal folds around the eye).  Many of the features are also features of Down Syndrome, so I am unsure how that will play out.

Outcome

We’ve had some mixed messages through all this.  Every time I meet with someone in Obstetrics, we are given the worst possible prognosis.  Their impression is that this baby will not make it.  As someone in OB, I totally understand this perspective and I am devastated.  Every time we meet with someone in the pediatric field, they say there is no way to tell until the baby comes out.  I understand this perspective as well and I am the tiniest bit hopeful- but also scared of what further disabilities my bay could have.  My baby *might* live!  But will s/he need a vent for the rest of his/her life?  Dialysis? Kidney transplant? Seizures from low oxygen? What kind of life will my poor baby have? It’s so very very overwhelming.

Everyone agrees that the longer I stay pregnant, the better chance for lung and kidney growth.  Since there is nothing to do to improve this but wait, I don’t need to be in the hospital and I don’t need to be on bedrest.  For now we will do weekly testing- a heart rate check and a fluid check.  We will monitor the baby’s growth and look at the kidneys every few weeks. But the reality is, we might lose this baby.  If the baby can survive the pregnancy, we may lose him/her shortly after birth.  If the baby can survive that, s/he will be a very sick little baby.

I have taken a couple weeks off work to adjust to this diagnosis.  I feel like I’m living my worst nightmare for this pregnancy.  I opted for genetic testing early on so that I would know my risk of stillbirth. I thought of my patient who had a baby with known trisomy 18 (risk of stillbirth or death in the first week of life is somewhere around 99%).  I couldn’t imagine having to grow a baby that would likely die.  And that’s what I’m doing.  I feel like I could adjust more easily if I wasn’t faced with dealing with pregnant women everyday, harboring a secret about my poor sick baby, pretending to be joyful.  Its hard enough being visibly pregnant in the world in general under these circumstances, but to interact with 20-30 people everyday, who will likely comment on it and want to talk about it, just feels like torture.  People tell me not to worry about work, but I have to figure out a way to come to terms with it, because if I can’t work, I feel like I have no future.  This weighs on me too. That and the guilt I feel abandoning my colleagues at a very very busy time of year.

I am hopeful the new year will bring new perspective, new hope, new peace.  I will return to work in some fashion.  We will monitor this baby.  I will grow him/her as best I can.  For now, I am just working on finding some peace with such a heavy heart.