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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If your baby might die

First, I am so sorry.  I have lived through a pregnancy with possibility of my baby dying hovering over my head.  It’s harder than anyone can know, unless they’ve been there themselves.  This shouldn’t be something anyone has to read or write because babies aren’t supposed to die.  And women shouldn’t have to carry them knowing they might.  But I was there, so I know it happens.  When I was pregnant I was hungry for people living through the experience I was- books and blogs helped.  I learned how others prepared and how others wished they did.  Just because you are preparing for your baby to die doesn’t mean that you don’t want her to live.  Of course you do!  But in the days following my daughter’s death, I was glad I had done a few things and wish I had done others.

Blanket

I hadn’t thought of this until I read someone else’s blog, who was in a similar situation.  She had bought two blankets- one to take the baby home in, and one to hold the baby in if he was dying.  While I was hospitalized the last weeks of my pregnancy, I did this too.  The irony is the blanket for my baby’s death came on time, but the blanket for my baby’s home coming didn’t come until after her birth and death.  I was happy to hold my daughter in something I had specifically picked out for her, not the standard hospital linens.  I held her in that blanket for hours and I like to think she knew that was her blanket, that we were looking forward to her whether she lived or died.

Outfit

When we found out Mabel would be a sick little baby, we stopped buying baby things.  Once I had some normal ultrasounds, I finally let myself cautiously buy a few things- a car seat, cloth diapers, a high chair.  Family started giving us a few gifts.  I let myself walk into Carter’s and just look at the clothes- a little frustrated that there were no gender neutral outfits.  But I hadn’t yet gotten around to buying anything when we had the ultrasound showing oligohydramnios at 27 weeks.  After that, we didn’t buy anything.  We canceled our baby shower, which today still makes me so so sad.  Sad because I didn’t get that chance to celebrate my daughter and sad because we never had the opportunity to really prepare for her.  But I couldn’t bear the thought of having all the baby stuff and packing it up if we didn’t take her home with us.  But as we neared her due date, I felt like I wanted an outfit for her- a burial outfit- just in case.  Chris didn’t like the idea of calling it that, so we called it a coming home outfit- we’d take her home in it or we’d bury her in it, whatever the case may be.  I wanted something I had chosen with love.  As fate would have it, the outfit arrived the day before we buried our daughter.

Photographer

A week after we lost Mabel, I stumbled across someone’s professional birth photos on facebook.  Seeing them threw me into an emotional downward spiral.  Aside from the obvious sight of her delivering a live baby caught beautifully on camera, I was struck by the thought that she not only has a live baby but gets the memories of her birth captured so beautifully.  I left the hospital with no baby and no professional photos to remember her by.  She gets those photos and gets to have more photos in the future.  There is an organization- Now I Lay Me Down to Sleep- of professional photographers that can help.  After Mabel was born, our NICU nurse contacted them but no one was available.  If I had thought of it ahead of time, I would have contacted them while I was pregnant.  Or found my own and paid whatever money it would take to make those memories.  I am lucky that we had our camera with us and several nurses took some amazing photos.  I look at those photos daily and are my most treasured possessions right now.  If nothing else, have a camera handy, even a cell phone, and give it to someone to take photos.  You’ll be focused on holding and looking at your child in the moment, as you should.  You’ll want the pictures of you doing so in the future.  And take video!  I did not think of this while Mabel was alive and wish I had.

Footprints

Get a kit that does inkprints and clayprints for your baby’s hands and feet and keep it close.  Many hospitals provide these, but not all do.  My sister had sent us two photo frames, one with clay prints, one with ink prints.  I had opened the gift in the hospital and was planning on taking it home for later.  I went into labor before that happened and I was so glad I had them nearby.  Those clayprints are the only physical thing I can touch to remind myself of my baby’s contours.

Remains

Have the hard conversation with your partner or family.  What are going to do with your baby’s remains.  I knew my husband preferred cremation for himself and I preferred burial.  While pregnant, I asked him if we could bury our child- I wanted her near us and wanted a physical place to go visit.  He was amenable.  Deciding on burial, I researched funeral homes and cemeteries in our town.  So the day we said good bye to our daughter, I was able to give our nurse and my parents the name of the places we wanted and they took care of the arrangements.  One thing I learned at the funeral home was when you are buying burial plot for your child, you should think about buying your own burial plot.  Do you want your baby buried with you?  Do you buy two additional plots- one for you and one for your partner?  Is there a family plot available?  We had a family plot offered to us, but it was an hour away and I wanted her closer.  Chris and I also ultimately decided on buying just her plot- we were new to the town we lived in and didn’t feel settle yet. We decided that when I die and am buried, we will move Mabel to be we me.  There is no way to truly prepare yourself for your child’s death and then to be asked to think about your own really hammers home the point that no one should have to bury their child.

These are just the things I can think of.  If any of you have lost a child or is preparing for that day, please feel free to comment with your ideas, to help others in our shoes.

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.