Words of Advice from Baby Loss Moms

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

 

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

 

“I think they didn’t tell me anything because they had no clue what was going on themselves and wanted to wait until they had more info- but, that choice made things much worse!!!! Talk to the patient, you have to talk them through what’s going on, you have to tell them. Also: if there’s a chance a baby might not make it, you have to prioritize letting the parents see the baby while working out the logistics. I didn’t get to see my kid until after he was gone. I even asked but was told it was too complicated. That’s still absolutely devastating to me, and probably always will be….One other thing: I was given the choice to go to private room on postpartum, or to a different floor. I really appreciated having a choice.” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Perinatal loss can be such an “ambiguous loss”. It was so validating to see everyone reinforce that he really was a real baby (a concept that almost all brand-new mothers struggle to comprehend at the moment of birth).” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Even if the death occurs later, call or write or visit the parents. We so appreciated that one of our midwives and her intern were able to make it to the ceremony we held for Paul. But a call would have been just as meaningful…. If applicable, invite the parents to share a photo of their baby for the baby photo board or book.”mother of Paul who died unexpectedly a few weeks after birth

 

“And for subsequent pregnancy: if you need to discuss the death of the previous baby, give notice in advance so the parents can prepare (especially if you need them to tell their story, or to dig into traumatic events). Also I was offered a viability scan I didn’t “need” but that was really reassuring.” mother of Paul who died unexpectedly a few weeks after birth

 

“With miscarriage (or infant death in general I suppose), even if there is ‘something wrong’ with the baby that you can prove with genetic testing, no one should ever say ‘It’s OK- the baby had a problem anyway.’ I’ve noticed a lot of pregnancy books use this kind of logic, and it’s bad. We don’t throw out people or stop caring about them because they’re sick, so what are we supposed to feel better that our baby that died wasn’t perfect, and that caused his death?” –mother of Serphim, who died of Potter’s Syndrome five hours after birth

 

“Encourage parents to hold, kiss, love, bathe their baby… If you’re uncomfortable handling a dead baby, please ask one of your colleagues to take over. This was our only negative experience with the staff- and it felt awful to have someone reject our precious babies. Remember that these parents need your care, support, love perhaps more than anyone else on the floor.” –mother of A&C, twins who died after PPROM at 20 weeks.

 

I was that woman, sitting in the OB office following my 19 week anatomy scan when the midwife came in with a student and very coldly and matter-of-factly started to explain the slight anomaly found on ultrasound. When I started to cry the midwife offered little support and I could tell she was busy and I think she really believed the finding was nothing major and that I was over-reacting. It was the student who came back into the room alone and sat with me, let me cry, and explained what was going on as best as she could.   So my advice to your students is that there will be days in clinic when you are busy and running behind and stressed, and these are the days when you might have to break bad news to a patient (or several patients), and your pager might be going off, and your receptionist might be reminding you that you have 3 patients in the waiting room, and you will probably have a huge stack of papers on your desk that need to be reviewed… but in that moment, for that patient- your time and presence is what she needs most.” –mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks

 

“It might be tempting to let the parents know that their loss isn’t a big deal compared to what other people go through, but that can be very disturbing to the grieving parents. Don’t tell them it was nature’s way of getting rid of damaged goods. It was their baby. They loved that baby and would have done anything to save it. To you, it was a blighted ovum, or a common Trisomy problem, or ‘barely even a positive’ – but to that family it was precious and beloved. The loss is still very real no matter how unformed the physical person may have been.” –mother to baby lost to miscarriage

 

“Our nurse hung a doorsign of a baby in an incubator on our door so that those entering my postpartum room would know that we had a NICU baby. That was great as it eliminated any too-cheerful questions. However at my six week postpartum checkup, the doctor didn’t know my baby had died.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“Cyr, take photographs- YES. And remember, you can never tell a loss mom that her baby is too beautifulm too perfect, too special and too unique. She will never hear this as her child grows. Give her a lifetime of school picture Oohing and Aahing in the short time you have with her. Use the baby’s name.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“I was pregnant with our 2nd baby and had our first u/s at 9 weeks. They couldn’t find a heartbeat. I t was hard and still is. I recall the u/s tech saying ‘oh I just know you’ll be back in 3 months pregnant again!!!” She was just so hopeful. But that’s not what I wanted to hear. I needed to honor THIS baby and THIS loss. So overall, I just wanted the midwife team to honor the present and respect what we are going through at the moment.” –mother of baby lost through miscarriage

 

“To make sure parents have all mementoes of their baby that they would like; to make sure parents know they have no been ‘cast adrift’ from the unit- you become so close to staff whil your baby is being cared for going home is like an estra wrench on tope of the loss of your baby; to make sure parents know how to access counseling. I would also add a couple points about traumatic birth- whether it’s something like PPH or an illness such as preeclampsia and HELLP syndrome- that mums know where to get information about what happened to them and why, and how to access support/forums/debrief about the birth.” –mother of Hugo, born at 24 weeks and lived for 35 days

What more do you have to add?

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Future midwives

I’m sure I received some training on loss when I was in midwifery school. I don’t remember the specific lecture or chapter in the books, but there had to be some educational experience I received. I remember more the on the job learning. I worked as a Labor and Birth nurse while I was in midwifery school. I helped woman as they worked hard laboring for a baby that was extremely premature, that was unlikely to live, that had already died. I was scared at first- I think scared of saying the wrong thing, of not knowing what to say, of doing something that would make the situation worse.

During school, while I was working as a nurse, I remember caring for one woman who was being induced around 24 weeks, the cusp of viability. Her uterus and amniotic fluid were infected, meaning the baby who already faced significant life threatening struggles that came with extreme prematurity, also faced life threatening infection. Truth was, this baby had very poor chances of survival. The neonatologists knew this and gave her the option of resuscitation or comfort care. As her labor was induced she talked and cried with her family, with her healthcare providers about what was best for her baby. She had a family member who had extremely preterm twins who suffered many long term effects from being born so early. She was unsure if she wanted that outcome for her baby, but also could not imagine not doing something for her child. When my shift was done, she was just getting into active labor and had not decided what to do. I found out later from the nurse who relieved me, that her baby came suddenly, without the doctor even in the room, and she still had not decided. Her baby did not survive. The worst part of being part of her story, was not knowing how to help her. I know, even with all the training and experience in the world, I still might not have been able to help her decide, but maybe I could have. I’ll never know.

I have since been with mothers as the doctor couldn’t find a heartbeat on the ultrasound. I’ve had mothers whose babies come prematurely and die sometime after birth. I’ve had mothers who choose to terminate for a fatal diagnosis and a mother who has carried to term despite one. I helped mothers through subsequent pregnancies and subsequent miscarriages. Each woman I have cared for, I have learned from- more so than in any class in school. Ultimately I have learned most from my own experience.

This week I’ll be joining the program director of my local pregnancy and infant loss non profit in a guest lecture about loss to the local midwifery students. It is at the school I went to, I worked at and I still (though rarely these days) precept at. I sort of invited myself when the program director mentioned it to me- how could I not? This is what I do- I’m a midwife and I’m a babyloss mom.

As we talk to the students, I want to give them all I can. I want them to remember the talk and I hope, being given by someone who knows both sides will help. But I need your help too- I only have my own experience. I’ve come up with some points I wish to make- I know it’s not a perfect list, and so I encourage you to give me your suggestions to. I also know that these do not apply to everyone’s situation and it’s not a comprehensive list encompassing nearly everything- I am trying to look at it from both perspectives- a provider and a patient.

Tell me: What did you want your midwife or doctor to do? What did they do that was great? What did they do that you wish they didn’t?

 

Stillbirth

  • Be honest. There is no good way to say your baby is dead. Don’t sugar coat; just be clear.
    • I was with a mom with a stillbirth at term. She had been sent from the office to OB triage when the midwife couldn’t find a heartbeat on the Doppler. I sat by this woman as the APRN did a scan looking for a heartbeat. We were waiting for the Maternal Fetal Medicine doctor to come and make it official. Since he was tied up, the APRN started scanning, all of us hopeful she’d find something with the ultrasound that the Doppler could not. The room was silent as she scanned, the parents on edge, the nurses and I staring at the screen. It felt tortuous for me- I can only imagine what it felt like for the parents. Finally, because no one was saying anything, I said simply, “they don’t see a heartbeat. I’m so sorry.” I explained how we had to wait officially for MFM doc and I stayed by her side until he came. There were a lot of “whys?” and I was honest there too “We don’t know. We may never know. But here’s what we can do to try to find out…”  
  • Describe the process- let the patient know what happens next (do they want to go home, gather things, wait at all? Induce right now?) Discuss induction and pain management. Discuss the baby coming out- mention about skin color changes and bruising that might be apparent. Offer to call NILMDTS

 

General Loss Guidelines

  • Say “I’m sorry”
  • Use the baby’s name…. over and over.
  • It’s ok to cry- in front of the patient too.
  • Get familiar with the process- offer autopsy, karyotyping, TORCH titers, thrombophilia workup. Talk to the hospital social worker to learn what happens to the baby, how parents arrange services (cremation, burial?)
  • Sit. Be with patient.
  • Coo at the baby- talk about all the aspects of a baby you would otherwise- the hair, whose nose she has. Encourage parents to explore- undress baby, open eyelids. I never opened Mabel’s eyes- I wish I did, just to see the color (likely dark gray as most newborns are, but now I’ll never know)
  • Be a photographer- take photos, encourage parents to take photos. Call professional photographer. Since no one from NILMDTS was available for me, my nurse and midwife took photos- so many photos and I am so grateful they did.
  • Let parents stay with baby as long as needed. Encourage patient to call and invite any support they choose.
  • Send patient to a floor without babies for PP recovery
  • Early discharge
  • Prevention of lactation (also milk donation)
  • Offer sleep aids
  • Referral to resources- counseling, local bereavement groups, books, websites.  Go through your hospitals bereavement box, so you know what’s in it.

 

Follow up

  • Call patient- some potential questions beyond “how are you doing?”
    • How are you sleeping?
    • Who is around to help you?
    • Are you eating?
    • How are you spending your days?
    • Services?
    • Have you looked through bereavement box yet?
  • Postpartum visit
    • Plan first morning appt- so pt does have to wait in waiting room with other pregnant patients
    • Plan extra time for appt
    • Be prepared to go over autopsy
    • Discuss birth control or preconception- no judgement on whether it is “too soon”
    • Ask about photos- ask to see if she has some and wants to show
  • Remember due dates- good time to call or send a card
  • Anytime you are reminded of that patient, tell her-call or text her- she would love to know she is not forgotten
  • Attend services if you are invited and can go

 

Fatal diagnosis (if carrying to term)

  • Frequent appointments if pt desires
  • Listen to FHR first thing
  • Plan for longer appointments
  • Consider frequent ultrasound if pt desires
  • Help patient with birth plan
  • Coordinate care with specialists- NICU, pediatric specialists to discuss immediate care of baby
  • Encourage special plans- blanket, outfit, photographer for baby
  • Discuss logistics- funeral home, cremation, burial
  • Connect- give resources
  • Help patient celebrate pregnancy

 

Subsequent Pregnancy

  • may need more frequent appointments, reassurance of FHR
  • If previous stillbirth- testing (level II, NSTs, early delivery)

 

Miscarriage (also applicable with fatal diagnosis choosing to terminate)

  • Say “I’m sorry”
  • It’s ok to cry
  • Discuss logistics- expectant management, miso, D&C, D&E
  • Discuss “why” (most common known cause- chromosomal, but often we have no idea why…)
  • Listen
  • Discuss future fertility if patient desires
  • Call patient for emotional follow up (“just wanted you to know I’ve been thinking about you)
  • Referral if indicated (recurrent pregnancy loss, genetics)

What am I missing?

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?  

A long day leads to a plan

We left the house in a bit of a hurry yesterday.  We had three appointments- first the local pediatrician, next an ultrasound with my primary MFM and last a meeting with a neonatologist.  Plus we had to go to the post office and drop off a gift for my nonprofit (averymerrybirthday.org).  I kept forgetting things (placenta brain is a real thing) and sending Chris back upstairs to grab them.  Finally out of the house, a few minutes away from home, I realized I forgot my hospital ID, which wasn’t necessary for the appointments, but would make getting around a lot easier.  Chris helped ease my frustration by telling me he left the house in his slippers!  I spent the rest of the day giggling whenever I looked at his feet.

 

I went into this day with some optimism.  I was excited to come up with some sort of plan.  And, I knew it was unrealistic, but I think I was hoping the ultrasound would give good news and the neonatologist would be able to give us some more tangible ideas of what to expect.  In my head I knew these hopes were unrealistic, but in my heart, the hopes lived.

 

Our first stop was with a local pediatrician.  Her group came highly recommended by many people in my community- OBs, nurses, midwives.  And when we walked through the door of the office, there was a midwife from another practice with her child for an appointment. I took this as a good sign.  We liked the pediatrician- she was knowledgeable, experienced and honest.  After going over all of our baby’s issues and the problems we face- she asked us “are you sleeping?”  Good question.  I find that pregnancy has allowed me to fall asleep much more easily, but my own witching hour comes between 4am-6am.  Lots of tossing and turning and some dark thoughts.  I appreciated her recognition that our situation is hard.

 

What we got out of the meeting was 1) This doctor knows Down Syndrome and 2) We shouldn’t move.  Our little town in CT has many strong services for special needs children.  Lucky for us we don’t have any plans to move anytime soon.

 

We then moved on to our ultrasound.  Our MFM doctor proposed a new theory on what has been going on with our baby’s kidneys.  The kidneys have sopped working for what appears no reason.  More commonly babies with Down Syndrome have issues of obstruction and water back up on the kidneys.  One theory she proposed is that at one point there was an obstruction and the fluid backed up in the kidneys so much that it completely damaged them, so they shut down.  We just missed seeing it on ultrasound.  This theory doesn’t change our management.  It wouldn’t have been something we could have changed had we seen it in action.  But working with that theory, the kidney issue can be associated with Down Syndrome.  I like reasons.  They help me cope.

 

There is no fluid.  We are back down to “anhydramnios.”  Which in the OB world is not much different from “oligohydramnios,” or low fluid.  I had a dream earlier this week that there was more fluid, so it was especially disappointing.   But it just amazes me how much this baby moves with no swimming pool.  The sonographer was commenting how she needed the baby to move to get another view and you better believe our baby kicked her probe.  All that choline and exercise has been paying off with brain development.  Look at our baby go 🙂

 

We also talked about monitoring and delivery.  Deciding on when and how to monitor our baby isn’t a simple decision.  We monitor because there is an increased risk of stillbirth with the low fluid.  Monitoring would hopefully give us early signs of distress and if they weren’t fixable, we would deliver the baby, hopefully before stillbirth.  So by committing to monitoring, we are saying we are comfortable with delivering the baby If need be, and possible urgently (ie by c-section).   Two things to consider: how early delivery would affect my health and the bay’s prognosis.  Chris and I both agree that we want to avoid a classical c-section, which could affect my future fertility and we think we’d be confidently out of that period after 32 weeks.  We are also weighing the effects of prematurity on the life of our baby. Delivering too early might be life threatening for our baby as well (more difficulty breathing, smaller kidneys, neurological effects).  We talked with our MFM about starting monitoring between 34-36 weeks (depending on information we got from the neonatologist).  Monitoring would mean admission to the hospital and monitoring the baby’s heart rate continuously until delivery- at 37 weeks.

 

With that plan tentatively laid out, we moved on to the neonatologist.  We had the lunch hour to kill before our meeting, so I introduced Chris to “the carts” at the hospital- 20+ food carts from local restaurants who set up shop midday outside the hospital to feed its hungry working masses.  You can get Ethiopian, Vietnamese, Indian, Italian, Chinese and so much more.  We also stopped by Labor and Birth to say hi to some of my colleagues who I haven’t seen in a month since I stopped doing call shifts.  It gave Chris a chance to see Labor and Birth as well.

 

Finally we met with the neonatologist, who spent a long time discussing our case and showing us the Newborn Special Care Unit.  In short, he is “very worried” about the state of our baby’s lungs, which could be hypoplastic.  We discussed the likely need for ventilation and how they determine whether it’s working.  It’s possible that our baby might not respond to ventilation.  It’s also possible the baby might respond initially but may never be able to wean off a ventilator, meaning the lungs would never function on their own.  Breathing is the first thing a baby has to do.  If baby responds to ventilation and is doing ok, then we can focus on kidney function by monitoring urine output and blood chemistries.  If baby’s kidneys aren’t able to function, we can always use dialysis with an end result of a kidney transplant.  But our sick little baby may or may not be a candidate for transplant.  Every further intervention must be weighed with how the baby is doing.  The neonatologist said it well: there is no reason to spend lots of time and energy repairing a flat front tire on a car, if the back tire is completely unusable.

 

We discussed how prematurity can impact lungs and kidneys.  In healthy babies, kidneys reach their full maturation at 34 weeks.  In healthy babies, RDS (respiratory distress syndrome) is rarely an issue after 34 weeks.  In the OB world, we start managing pregnancies differently at 34 weeks- we deliver if you’re water’s broken, we stop monitoring for preterm labor, we don’t stop preterm labor if it happens.  34 weeks seems like a magic time- a time we’d be willing to intervene, because the baby would have a chance.

 

We talked about difficult things- when to stop ventilation.  Comfort care.  He showed us a room where we can hold our baby in private as s/he take his/her final breaths.

 

We talked about taking it day by day and keeping us in the decision making process.  Though we talked about the hard stuff, it was important.  And it wasn’t all bad.  We will ventilate the baby in hopes s/he will breathe.  We will check the kidneys in hopes that there is some function.

 

I want to be as clear as I can.  Chris and I are very committed to this baby.  We want nothing else but to take this baby home and raise him/her.  But that might not happen.  We want so badly to make the right decisions to either help our baby live well or pass with little pain.

 

In the meantime, I carry this baby close to my heart, literally and figuratively.  I hope to stay pregnant another few weeks to get to the point where we feel this baby has a chance.   I hope and I hope my baby will choose to stay with me until then.  34 weeks, kid.  Make it til then and we’ll watch you like a hawk and try our darndest to get you to term and see your face.

New Year, trying not to despair

New Years Day 2014.  I scroll through facebook and see many a status that say- 2013 was such a good year, bring on 2014!  Or 2013 was such a hard year but 2014 is bound to be better.  Many of my friends were blessed with weddings and babies and big life events.  Many struggled through some tough times but have either something big and good and concrete to look forward to or just simple hope for a better year.  I am just not there.

2013 had it good moments- we honeymooned in Panama, we bought a new home in a quiet suburb with great schools and a big yard, I felt really appreciated at work, I got pregnant!  But the second half of the year has just been one challenge after another.  I look forward to putting 2013 behind me.  But I don’t look forward to 2014.  It’s going to be hard.  I think harder than 2013.

We went hiking today.  A couple of our good friends invited us- I was toying with the idea when I woke up in the morning, so it felt a little like fate. It was cold, vigorous and distracting- which was good.  I needed to be distracted because I woke up feeling on the edge of losing it.  I’ve kept it together all day, but I still thought about the new year and what it may bring.  We passed many people on the hike- most wished us a happy new year.  I usually just said a pleasant hello in return.  I feel a little unable to envision a happy new year.

The new year brings us our latest challenge.  As we wait for this baby to come we have to make some difficult choices.  When it comes right down to it, this low fluid presents a very big risk for distress and stillbirth.  We can solve that problem by monitoring and potentially delivering early if there are signs of distress.  But prematurity presents its own risks to our very medically complicated baby.  Baby might not survive or be severely neurologically impaired.  We are forced to weight the risks of stillbirth versus the risks of prematurity.  All we know is we want to give our baby the best possible life and we dont want him/her to suffer.

We are waiting to meet with another specialist- which I look forward to, probably too much.  Despite knowing better, I keep thinking this specialist will at least tell us what is going to happen.  I guess that is a form of hope.   We are meeting with a well respected neonatologist who is also on the ethics board at our hospital.  Maybe he can tell me what to hope for.  Its unrealistic to hope for a perfectly healthy baby.  I think right now my biggest hope is for a baby whose lungs function well.  We can deal with the kidneys as needed. We can fix clubbed feet.  We can live with Down Syndrome.  Or maybe my hope is for no more surprises.  There are many possible complications associated with Down Syndrome that can’t be diagnosed until after birth. Can I hope that we have reached our max?

When I was with my patient who had her baby with Trisomy 18, I remember feeling a sense of relief on her behalf when there was no heartbeat at 41 weeks. I thought about how the baby made her decision on her own and her mother wasn’t forced to make difficult and painful decisions for her.  My patient had been worried- what if the diagnosis is wrong, what if I choose the wrong thing, what if my baby is in pain? She cried after birth for her baby, so sad that she never met the baby in person and worried that her baby didn’t know she loved her.  I reassured her that the womb is the happiest, most connected place for a baby to be.  The baby feels no pain. all the baby’s needs are met. And the baby can feel what the mom is feeling.

I don’t know what the right decisions will be for my baby.  But I do know that my baby is happy now- carried inside me, needing nothing, hearing my voice, feeling my heart beat.  I take solace in that.

As for the New Year 2014, I have two resolutions.

1. I want to support my husband more.  He has been nothing but love and strength through these hard times so far.  I wish to be the same for him.

2. I am going to try not to despair.  I see rocky times ahead and I have to remember that there will be good times ahead too.  There has to be.