“Miscarriage” and “Stillbirth” – why I hate those words
We need language to communicate ideas and concepts and sometimes I have to use those words just long enough to establish a rapport with a person – a newly bereaved parent, family member or to teach a student or staff member. No sooner do the words exit my mouth do I explain why they wont hear them from me again.
Both words speak only of processes (and badly at that) nothing of loss or pain or grief.
If I could purge one single phrase from our culture it would be “just a miscarriage”. How many times have you heard that phrase? Yet there are so may instances where it is anything but “just” as if that word is somehow going to temper the pain. What if the mom has been infertile for 15 years and this is her first conception ? What if the dad has died or lost his fertility? What if she is older and knows her chances to conceive again are slim? What if she really really didn’t internalize that loss was a possibility and had invested herself in this pregnancy 100%.
When I had a loss at 9 weeks, I had already made some life decisions based on the expected arrival of that baby and undoing those decisions was hard.
When I was pregnant (all 4 times) I thought about the baby/pregnancy at least once a minute every waking minute and sometimes in my dreams. If I was awake 16 hours a day that is 960 times a day 7 days a week = 6720 times to think of them a week for however many weeks. Why is it that an entire culture who watched Titanic and saw Rose & Jack have a 1 week romance (and fully bought the premise that she loved him FOREVER) then reject the idea that a woman who carries within her a baby who lives for 8 or so weeks would have enough of a bond to spark real, deep grief.
Remember also that medically, loss up to 20 weeks is considered “miscarriage”. If you have ever seen a 19 weeker, you would see a person with completely human form – often lovely in appearance ..toenails, ear lobes, nose..the whole deal. I have dressed many “miscarriages” in clothes and hats for thier mothers who love them very much. For parents, there is not generally a magical moment at the beginning of the 20th week that sparks love that didn’t exist before…they loved their 19 week baby as much as a 21 week baby and it is a cruelty of our society that we think any of this should make a difference.
Stillbirth. What a ghastly, inadequate word.
We use it to describe deaths prior to birth between 20 & 40 weeks gestation. People assume that this death shouldn’t be as bad as a neonatal death because the baby didn’t take a breath outside the womb. There is a common misconception that the mom and family hadn’t really bonded with the baby yet. When you carry a living being around in your guts for that long and allow them to kick you from the inside you are regularly reminded that they are real and alive and have a place in your life.
Add to it the foolish idea that the death should somehow hurt LESS because they aren’t born? Even in terrible circumstances when people learn that a loved one has died, their grief is not compounded by the realization that they must follow through with an unavoidably painful process because their deceased beloved relative is INSIDE them. I have a good friend who coached her sister-in-law through the birth of her deceased baby and the mother said “I don’t want pain medication, I want my body to hurt as much as my spirit does”. And too often my dear ladies return to a world that does NOT respect the magnitude of their pain and loss and has no idea how to support them. We will talk about that another day.
So what do I say if I don’t say “miscarriage” or “stillbirth”? I say “pregnancy loss” and “infant death”; when it crosses over from one to the other is for the mom to define. Whether a baby dies just before of just after birth (although very important in which paperwork we fill out) makes no difference to me in terms of how I refer to the baby or treat the parents / family.
When I speak to families, I give them “permission” (not that they need if from me) to never say those words either. I walk with them in a process to figure out what words describe for them what happened so that when they run into a friend at the Target who asks about the baby, they will feel some assurance that their answer is true to themselves. This often sounds something like “the baby died just before she was born”.
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- Tagged: grief, infant death, Miscarriage, pregnancy loss, stillbirth
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Life and Loss 
Love this! Thank you!
Hi Nurse Tammy, my name is Georgia Bedford and I am the Newsletter editor for Sands Qld, Could you please email me? Thanks
Very well written!!! I totally hate the word stillbirth. I hate when people refer to my daughter as stillborn. She was a person and she died at birth. I cringe when I hear the word. It does seem like they are downplaying her death when they refer to her as such and they truly do not understand the magnitude of the loss.
I am so relieved that you are writing about this topic. I agree with Vicky that I also hate the word stillbirth/stillborn. Its a cruel word that when you experience the trauma of your baby dying, increases the suffering. I think people forget that babies still get the hiccups, they get upset, they wiggle, kick, push, flip, have times of sleep and awake, all while still sitting in their Mommy’s belly. So why place a word on an infant death, just because the baby didn’t make it through delivery? Thank you for writing about this and educating people.
yeah girlfriend- I knew you could do it!!! Keep on writing hon…
Thank you Tammy for all the wonderful work you do with mothers/families in pain.
There are no words to express that truly equals what they are experiencing.
God bless you!
Oh yes. Superb post. I’m sharing this one. Thank you.
Thank you SO much for writing this. As a mother of a child born into Heaven at 19 weeks and 2 days, I personally despise the word “miscarriage”…because my son’s name does not “exisit” on paper, I am doing everything I can to create a legacy on his behalf.
Our tax CPA asked if our girls were “alive”, born alive, so we could claim them on our taxes. We couldn’t because they were still in my tummy when they died, at 26+wks. (Bethany, Susan and Danielle, spontaneous identical triplets- spontaneous, 12/20/97).
I was living on my own at 15, working full time nights and weekends while going to school. When I got pregnant at 16, the father split. So, I quit school, quit my job, and moved back in with my mother. This was all very hard for me to do. At 16 weeks, I went to the OB in pain, and he informed me that there was no heartbeat or movement. I refused to go to the hospital. I thought that somehow the heart might start beating again, if I just waited out the pain. I stayed in my room for 3 days until the baby came out, so tiny and beautiful. I took him to the ER and the medical professionals were so very cold about it. They refused to return the body to me. I was scolded, frowned on, and talked about as if I was insane by nurses (while I could plainly hear the conversation). I was repeatedly told that it was for the best, that I had no business having a baby at my age. Regardless of whether or not they were right, nobody understood what I was going through or treated me as if I had been through a loss. This article really touched me.
Michelle,
I’m really sorry that you were treated so badly when you suffered your loss. We in our hospital have really raised the bar in the last 8 or so years, but these stories still make me sad. We keep tiny little blankets in the ER when little ones are born. Thanks for writing.
Thanks for this, makes me feel a little bit more normal. I had twin girls born at 19 weeks. I have never known the right words to describe what happened. Miscarriage seemed to minimise my loss as I still held my babies and stillbirth never felt right either. I had twin girls who died before they were bown, or my girls died before they were born sounds so much better.
There are quite a few medical terms that I hate – especially incompetent cervix. What powerful words to make a mother feel like her body was at fault. Or the words ‘fail to progress’ during labour. Again really makes mothers feel like their body was at fault. I think we really need to rethink some of these words.
Hi Tammy – I am a bereaved parent and I love what you have written in this article. May I have permission to reprint it? Please contact me. Alana – Sands Auckland Central
Sure, you can reprint it, just give me credit of authorship. Im glad it was meaningful to you.
I had “just a miscarriage” after 10 yrs of infertility. It was far more than “Just” anything. It was a totally devastating, shocking, turn-your-world upside down life event. It is still hard to recall and think about even though I’ve finally had 3 kids (and another loss). Thank you for sharing this.
Thank you for writing this. It brought me to tears. It helped validate my own feelings about my losses and how I talk about them with others. My first daughter, Avalon, passed away at 40 weeks and 5 days – the day before I went into labor with her. My pregnancy with her was uncomplicated but yet she didn’t make it. 17 months later, Avalon’s little sister, Lilah, joined us, alive and healthy! Thanks to a new OB/GYN who listened to my concerns, monitored me closely, and had me do NST’s twice a week. Then last December, I suffered an early pregnancy loss at around 8 weeks. The same week we celebrated Lilah’s 1st birthday. I immediately got pregnant again and I am currently 31 weeks along. I’m scared out of my mind all day, every day, that something will happen to this sweet little baby in my womb. Because I know it can. Because I have a huge network of other “angel mommies” who have also suffered through pregnancy loss. Because I have lost 2 babies and have only 1 healthy baby in my arms right now. But I have faith. I have to.
Thank you for sharing your story, Shelby. It is a moment by moment struggle to trust and have faith. I pray that you find peace each day as you journey through this pregnancy.
perfectly said. thank you for this.
This is a great piece. Thank you for your words, caring efforts, and compassion. One other word I really disliked and still do is fetal demise. She is my daughter, my very developed daughter, and her name is Carly. I hope more birthing centers and hospitals will read this and take the golden nuggets from this piece. The whole Bereavement department could do things so much more RIGHT! Thank you for all that you do.
If the staff feels the need to use that terms amongst them, then fine, but no parent should ever ever hear “fetal demise”…my husband died 4 days ago…was that a “spousal demise”? Makes me want to smack people.
Thank you. I have been struggling with the anniversary of a pregnancy loss that happened 13 years ago. I don’t mark the date on my calendar, but every year my body remembers without any help from me. I had been wishing I could stop mourning because it makes people uncomfortable and, after all, I have “so many” other living children. I would never say to someone who’s friend died, “Ih you will be fine. You have other friends.”. That’s what people have said to me all too often.
I wish I has had you as my caregiver at the hospital when I haemorrhaged during my loss. I was shoved into a room and left with no water or food, or care for 7.5 hours. Nobody cared that my baby died. It wasn’t important to them. I was the only one grieving for her loss. It was a very lonely time and the words and sayings they threw around were painful; “wasn’t meant to be” or “at least it didn’t happen when you were even further along in your pregnancy”. I wish they would say nothing! I just needed someone to recognize how much it could hurt, and to use the right language.
It also bothers me that people refer to my son, born at 25 weeks, as a miscarriage.
Though I have not lost a 20-40 week baby I really believe it would hurt even worse then it would if it was later after their birth and into childhood. I look at my six month son everyday and every little motion and noise he makes I feel like it’s a miracle. The thought of him never making it that far or getting to experience these things is simply unbearable. I am blessed that he has been able to. I cannot even begin to fathom what a mother or father would feel if their little Angel was lost before they were able to experience these things. It would have to be a daily reminder that today they could have been rolling or they would have been walking by now. I can’t even imagine.
“miscarriage” and “stillbirth” doesn’t even scratch the surface to represent what happen. I am so incredibly sorry for people who have experienced these losses. Your babies were definitely just that babies and your loss was as real as if God forbid something happened to my son. They are your children from day one and they are important to your lives. Miracles and Gifts.
Thank you for this post. My daughter died during delivery and since she never breathed on her own is considered stillborn, but that term feels nothing like what we experienced. I really appreciate your giving permission to parents to coin their own terms for their experiences; it’s taken me quite awhile to figure out how to quickly say what I mean, and I still stumble over myself a lot of the time. I think I felt trapped by having to say “stillborn” because that is what the doctors told us, and once I gave it up it was liberating.
Also, I hate the term “poor obstetric outcome.” “Poor” is woefully inadequate and sounds so cold and impersonal.
Nurse Tammy, I wish you were with us when my daughter-in-law went through the pain of labor to deliver a perfect little girl at 21and 1/2 weeks. She refused pain medication. My son and I were at her side. My granddaughters heartbeat was strong and she was born alive. We have the birth certificate and death certificate to show that she was here. The cause of death was listed as miscarriage by a doctor that seemed like we had interupted his Sunday evening with an unplanned emergency. What we did not receive was any compassion, help, guidance or empathy from the staff at the hospital. I wish someone like you were in the room with us. Maybe there would have been less chaos and some dignity for my granddaughter and her loving parents. Please keep trying to change the language used when a pregnancy does not turn out as planned. The words miscarriage and stillbirth seem hurtful, cold, demeaning to life which is so precious. Thanks for making a difference.
I lost my baby boy at almost 16 weeks pregnant in April this year. I hate the term miscarriage given that I went through the whole labour process – contractions and all to deliver him. I also lost a baby last year at 11 weeks pregnant – very different – just like a heavy period – no contractions etc. I don’t mind using the term miscarriage for that one. Calling the loss of my son a miscarriage is a miscarriage of justice to me – it is though my loss is minimised. I actually prefer the term stillborn for him but I usually just tell people that I lost a baby. The term I hated the absolute most and which caused me the most pain was when my obstetrician kept referring to my son as the ‘fetus’. Talk about a hideous term. Why couldn’t she call him the baby?
Today I gave a lecture to a room full of OB Physicians, Residents and Medical Students. It was an hour long, but I referred them to this thread. I told them to learn to get more comfortable with the word “baby” and quit saying “fetus” to mothers. It was a long lecture but I told them to quit with “fetus, abortion, morgue, miscarriage & stillbirth” and replace them with “Baby, Pregnancy Loss, Infant Death (before or after birth), & secure holding area”. They responded really well to the information…noone had offered it before. I have a life’s mission now (not like I didnt have one before).
I almost didnt do the lecture because of my husbands death, but who better to talk about care of the bereaved than the bereaved. I was on target with the talk, but they had to lead me to the room and take me away and put me in my car. Someone asked me if I needed a reciept for the valet and I just stared back and said I didnt know.
Nurse Tammy, I am so sorry about your husband. Thank you for not canceling the lecture. Someone has to change the way the medical community deals with mothers, fathers, grandparents, siblings that lose their beloved infant in a way that is not dehumanizing. I must agree that I hate the word fetus as well. No woman wants to hear someone talk about a “fetus”. I also feel sick when the loss a child early in pregnancy is called a spontaneous abortion. In our culture “abortion” infers a choice made by a woman to terminate a pregnancy. The people communicating here had no choices at all. Continue your mission to change the vocabulary that the medical community relies upon to communicate information. We are all people and many that you represent have no voice of their own because they are not here with us. Once again thank you for your dedication to this mission and accept my deepest condolences on the passing of your husband. I am sure he is proud of you today and was by your side at that lecture.
Thank you for this. I had a stillbirth at 17wks. I have been told a few times that it was simply a miscarriage. No. I labored. I had the epi. I pushed and gave birth to my lifeless child. When you can see that baby – formed – and hold it or see it – it is more than a miscarriage. The word needs to be redefined. Period.
I just went back and read the other replies, and I want to specify that my nurses during my stillbirth never used any of those “heartless” words. It was people i “ran into” online that belittled my experience. My nurses were nothing but loving, understanding, and sympathetic. I didn’t learn of the “official” definition of stillbirth until other mothers who had had an event that fit that specific definition that I started to have a problem. They wanted to act like their experience was more special/heartbreaking than mine. That is what really baffles me. As mothers, I thought we would always stick together, no matter what.
Heathernickel, I am sorry for your loss. I am glad to hear that the team of nurses that were with you during the worst time in your life refrained from using these words that should be eliminated from our language. Our experience was filled with the use of all the words we have discussed as “taboo” on this page, making the experience for my son, daughter and the family much more difficult to handle. The words stay stuck as part of the memory and have hindered the “healing” process. The one nurse that showed compassion was ordered to leave the room by her superiors. I guess each experience is different but thanks for sharing that not all are like the one that my family endured. God Bless you.
Dear Heathernickel and all other women reading this-you gave birth to a beautiful baby. You are a mother to your child forever. Erase the words miscarriage and stillborn from your vocabulary. I know it is hard. These are words used by ignorant people that are speaking about something they have no knowledge or experience with personally. You were there; you know the truth. You carry the love you have for your child with you everyday, the same way you carried your baby in your womb for however long he or she was safe inside of you. That’s all that matters because it is the truth.
I just wanted to thank you for this. It seems rare to find people in the medical establishment who are truly compassionate towards those of us who’ve lost babies. I have lost 7 myself and the several times that I actually received care for the process, I was treated like an idiot, like I was never pregnant in the first place, like it was no big deal, like there was never LIFE in me…and I hated every minute of that. All of mine have been 1st trimester losses, including an 8.5week ectopic where I lost my tube (actually this was “supposed” to be a normal miscarriage according to my OB…until I came in in severe pain with rupture 😦 lost my tube from an 8cm “mass” and lost 800cc of blood), as well as a 10 week loss where, 2 weeks later, I experienced actual labor to deliver the sac intact. So I’ve had a lot of losses, and while the ectopic surgery was probably the most dramatic and long-lasting (considering I lost part of my reproductive system), the 10 week one was the most horrible experience. I LOVE labor and birth, it is one of my favorite experiences in the world, and to have to endure it in a situation like that was absolutely awful. Definitely pregnancy loss….not simply just “miscarriage.”
I am now pregnant for the 11th time and we are praying that our 6th shot at baby #4 is a success (so far so good at 18 weeks). However, when trying to get early care and explaining my reasons, the doctors/nurses either treated me like I had somehow caused my losses, or they just didn’t acknowledge them at all. It’s almost like a lose-lose situation.
Sometimes I just want to be brutally honest with people and say “my babies DIED.” I know that a lot of the time, sticking with technical terms is a way to sort of skirt around the reality of the issue because people are uncomfortable with it,, but sometimes I just get the urge to tell people get over it. They don’t have to suffer the pain, so the least they can do is be compassionate towards those of us who do.
Thank you for this post! I had a pregnancy loss on 12/17/12 at 5 weeks. I had only known I was pregnant for a day and a half before I started bleeding. This was my third pregnancy, I have two healthy girls, so I was shocked and devastated by the loss. At our family Christmas dinner my husband’s uncle started asking when #3 would be on the way, we just tried to dodge the question. My mother in law spoke up and said “There almost was a baby but it didn’t make it.” It was all I could do not to cry! I know she meant well but that was incredibly insensitive! I wasn’t almost pregnant, I did have a baby growing in me and I lost him or her! People need to be educated on what to say or else don’t say anything at all!
Thank you. My daughter was “stillborn” 20 years ago and I have always said that I lost a baby at birth. I know that’s not the protocol but to say she was stillborn never sounded right to me. Your words help me with that fact. So appreciated all these years later.
Thank you for this post. Language is so difficult. I haven’t been bothered by the word “stillborn” as the babies are born still. I hadn’t seen that some (not all) would interpret the term as a devaluation of the baby’s life. Someone told me that in the Japanese culture stillborn children are described as “children of the waters” and they have shrines where these babies are remembered. I’m not sure if that is the precise language — but it seems lovely, a “child of the waters”, the birth waters.
BTW: The term that has always bothered me (although I use it) is “lost”. 26 years ago we “lost” our son John at 3 days old. Lost makes it sound like we misplaced him, and we didn’t misplace him. Also, we are people of faith, so we feel we know exactly where he is. Still, to those I share the story of John with, I use the word “lost”. I haven’t found other words.
Also, when people would ask us the common question, how many children do you have — At first we would say we have 3 and John passed when he was 3 days old. Eventually, we would just say we HAVE 2 children, knowing that we honored and remembered John in our hearts, home, and family. At first, it stung not to acknowledge his existence, but as time when on it became easier to do, we always remember John on his birthday, at Christmas, and so many other times. And the reality is that we HAVE 2 children and we HAD 3. Again, language is very difficult.
Max Lucado has a most wonderful sermon entitled “The Empty Crib” where he speaks of the word “lost”. I, too, as a bereavement consultant have a very hard time using the word “lost” and find that I stumble over it all the time. While I know in my heart that the sweet babies are not lost, because that is my faith, it is not always the faith of my patients and I have to respect that. I am so very glad that you know exactly where your son is…
Thank you for writing this
can i add my thank you? i have 4 in heaven and 5 here on earth. i am 13 years down the road in the grief process. 13 years of judgment and misunderstanding. 13 years of standing alone as i grieve and remember the value of the lives that do not live here on earth. THANK YOU for taking a stand in the medical community. 3 hrs after my daughter was born dead, i was escorted from the hospital! 3 hrs! they didn’t know what to do with me. fortunately the midwife was kind and good. some of the staff/nurses took the time to make me footprints and wrap her in a blanket and take a picture of her. i did not know to ask for a picture of me holding her. i did not know what to do. friends didn’t know what to do or say…. some tried. it helped. my husband picked up from the hospital and annoucned that he was “over it” and i needed to move on…. i sold her belongings to pay for the funeral which was for the most part donated anyhow but i had to buy cheap flowers from walmart and pay for the hole in the ground (they gave me a discount too…. sweet, sweet,sweet cemetery!) my living children and i remember her and one day i will buy her a headstone. one day i will see her again…. i’m sorry to hear of your husband. you are in my prayers… bless you bless you for making a difference.
So sorry your comment didnt get posted earlier, it got lost in the shuffle…my apologies
Belle,
I thought that my son and daughter-in-law had an awful experience and were treated horribly by the hospital staff. Your story is by far the saddest and coldest I have read in the past 14 1/2 months. As for your husband, I can’t believe he could tell you he was over the “loss” of your child. You will never be over such a loss. God Bless you, your children here on earth as well as the ones in heaven. They are in God’s hands now but will always be your little ones.
((Hugs))
Colleen
I think it is a little scary to thin we will “never be over” such a loss. Let me reframe it just a bit…while we will never again be exactly as we were before, I dont see it as “getting over” or not, I see the process as integrating it into the person you are, it becomes part of you. If you are nurtured, it can help you be an even more amazing person than you were before – more aware of the pain of others, more willing to reach out and care.
Hopefully nurse Tammy, you are right and someday I will be a “better” person for the grief I have endured regarding the loss of my first and only grandchild. Hopefully my children, her loving parents, will integrate the experience and become stronger than before. After traveling this journey of grief for almost 15 months I can say ” I am not there yet”. When will I get there? Will I ever get there? My sister recently shared with me that helping me through this experience gave new meaning to the losses she endured over 25 years ago. Maybe in 25 years I can be amazing and wonderful or maybe I will just be old. Sorry I cannot share enthusiasm about grieving the loss of my grandchild. I read this blog for support not a sermon about how it will make me or others better for living through it. Poor Belle had a horrible experience. 13 years later she seems to still be grieving as well.
I usually do not leave many remarks, however I browsed a few remarks on
this page Miscarriage and Stillbirth – why I hate those words | Life and Loss.
I do have 2 questions for you if you don’t mind. Is it just me or do some of these responses look like they are written by brain dead visitors? 😛 And, if you are posting at additional online social sites, I would like to follow you. Would you list of every one of your shared sites like your twitter feed, Facebook page or linkedin profile?
I dont think the responders are impaired or stupid, I think they are responding to a topic that society doesnt spend enough time talking about and thus most folks done come at it with a well formed vocabulary or frame of reference. Maybe that is one purpose of this blog…to give people a chance to read about it and form useful opinions that will help them or someone in their lives.
As far as other social media where you can follow me, this is the best place…I dont tweet or have a linked in (I should, just too lazy) and my Facebook is mostly personal where you are more likely to see a photo of my dog rather than any cogent essays on loss.
Cold Caller Signs,
Thank you for deigning to comment on our humble little grieving hearts’ words. We appreciate your condescension, and obvious superiority.
You can call it karma, “the law of sowing and reaping”, or “what goes around, comes around”…. or you can say that “you will be judged by the stick that you judge with.” I am praying fervently that you will never find yourself in such a place that you understand what and why we have written here.
And just so you know, it is people like you that have driven us to grieve in silence and why we are all applauding Nurse Tammy for being so brave and bold as to break that silence!
How dare you!
FYI to everyone else, I just (July 25th) lost my 5th little one, completely unexpected and unexplained. I wanted her very much and just cannot wrap my head around this….. and my family totally forgot our stillborn daughter’s birthday! She’s only been dead for 4 years and I just don’t get how she can be forgotten so quickly.
Cold Caller Signs,
I think it would have been better for all if you had kept your comments to yourself. You have added more pain to the lives of people already grieving.
Morgan Kathryn would be 24 years old tomorrow, August 24, 2013.
August 22, 1989: Movement stopped at 2 a.m.
August 23, 1989: Intrauterine demise confirmed.
August 24, 1989: Morgan was born–still as can be at 40 week, 4 days.
All these years later my body remembers. I grieve for three solid days and then enter the hustle and bustle of life once again.
Nurse Tammy, thanks for giving me a place to share my story.
Remembering Morgan Kathryn on the Anniversary of her birth – thank you for honoring us with her story.
Dear friend,
I am remembering with you today.
(((hugs)))
Lydia,
I am keeping Morgan in my thoughts and prayers on what should be her 24th birthday.
((Hugs))
I just recently had a miss miscarriage and had a d&c. I completely agree with the terminology.
There is absolutely nothing to describe the way I feel. This was my first child and I have wanted a baby for so long. I feel so lost, confused, and empty. I am sad all the time. I’m only 4 days out from the surgery, and my life has forever been changed. I think I’m still in shock.
The 9 week loss I had 21 years ago changed the course of my life since it was my first step into perinatal loss care. I hope you are surrounded by people who care about your pain and will support you in it. Remember that we are made to heal, physically and emotionally…but it does take time. I sorry for your loss : ( hugs to you.
Oh Michelle!
I’m so sorry. I’ve been through 4 miscarriages and 1 stillbirth. The terms describe the events and not the preciousness of each child. They were all wanted and are all missed. It’s been nearly 14 years since my second son died at 6 weeks along. I think of him continually and he DEFINITELY changed my life! For love of him I speak out. For love of him, I am NOT quiet about the hole in my heart and for love of him, I cherish every single life no matter how short.
I hope you can find a way to honor your child’s memory this season…. the first holiday is so hard. The first year is brutal. Hang in there. (((((hugs)))))
I have experience the death of a baby, my baby I was 16 weeks when I found out by babys heartbeat was no longer beating. That was march 25,2014. On march 26 doc confirmed it. On march 27 my baby was born . I have 3 kids at home and he was going to be our 4th baby. So now we have 4 kids but one beat us to heaven, and is waiting for us. Its so hard to hear doctors and family members say you can have another one, or it was better this way. Its been 4 months but it feels like it was yesterday. I dont like the term missed abortion the doctor used . Thank you so much for taking time and educating doctors and medical staff about how words affect us.
Lilly,
My heart goes out to you. As the days and years pass you will find ways to cope but truly it will always “feel like yesterday” in so many ways. My prayers go with you as you learn to navigate this terrible and long road. Indeed, children are not like socks, one cannot replace another. (((hugs)))
I hate it! My son died passed after only 2 minutes old, being born at just 24 weeks, still is considered stillborn. I feel some sort of need to defend those 2 precious minutes, and it tends to not be in any loving attitude that I want to remember them. Thank you for this conversation.
Katie,
Im sorry for your loss : ( THe legal definitions of all of the words associated with these deaths vary somewhat with different legal jurisdictions, BUT I dont know of any place where a baby who lived for 2 minutes would be considered “stillborn”. In my professional experience I would describe his as a neonatal death (not that naming it anything different makes the whole experience better or worse or more or less important). When I care for someone, what is important to me is that their baby who was alive is now deceased and its hard.
I have heard of cases where staff members are really uncomfortable with the cohort of babies who are born alive but cannot or did not survive neonatal care and the staff declares them “stillborn” even when it was not the case. That doesn’t happen where I work now because the staff is well educated, but I hear stuff from around and stuff from different times.
I consider it very important to simply document THE TRUTH at any delivery. If they are alive, they are alive regardless if they live 30 seconds or 30 minutes or 30 years “lub dub, lub dub” …if I hear a heart beat, they are alive. If they died prior to birth then I document that. If there is a time when people should be allowed to be told the truth, it is in these situations.
(((hugs))) Katie,
Oh those precious two minutes! I pray that one day you will get the validation your heart craves for your son’s life. In the mean time, I will recognize his sweet brief life. 🙂 If we each take the time to value the lives of those no longer here, maybe the rest of the world will follow our examples. (((hugs))) Belle
Dear Katie, I honor and recognize those 2 precious minutes because they represent how long your son lived on this earth. He will be forever in your heart. God Bless you and may you find many kind people on this “new” journey that I would not wish on anyone. But there are good people who do recognize his life. Let them learn through your example.
((Hugs))
Colleen
Thank you. Everyone I have talked to who hasn’t been through a loss like mine say miscarriage. It wasn’t that to me. It was an infant death. She was born breathing but at 16 weeks and just couldn’t sustain. I hate those two words as well because I don’t feel like they apply.
Very smart, heartfelt and meaningful article. My one concern is someone’s comment about comparing miscarriage and stillbirth with abortion. My precious baby boy was considered a “therapeutic abortion” at 20 weeks. I actually didn’t have a choice as he was slowly dying inside me, labeled “incompatible with life” and “poor fetal diagnosis”. My “choice” was to let nature take it’s course and let him die slowly and possibly outside of me gasping for breath, or to interrupt my pregnancy (which is a term I hate more than stillborn). Hardly a choice any parent should have to make, would you agree??? It took me 2weeks to make my “decision” and only did after intense prayer, research, multiple medical opinions and gut wrenching soul searching. What was worse…to live with my sin for eternity or allow my son to suffer any longer. I based my decision on if he were outside of me, would I allow him to continue on life support, suffering with no chance for survival or would I take him off life support. I chose to take him off life support, which was me. I labored for 38 hours and delivered still and quietly. My husband and I held him and spent a precious 4 1/2 hours with him. Three years later I still live with an immense amount of pain and grief and shame. You see people like me are living in a quiet isolating reality. We don’t really fit in anywhere. We are judged by ourselves and a society that doesn’t understand. So I will take the term stillborn before I will ever call my son a therapeutic abortion. Lucky for me, I was surrounded by a wonderful and supporting labor team. People however have been judgemental and ignorant and mostly insensitive.
I’m so sorry you suffered such a difficult loss. We need to be gentle with ourselves that we make the best decisions we can in the situation were in with the information we have. I often ask my palliative care families to make a pact to not second guess themselves or whichever spouse gets tasked with “deciding”. You were in an agonizing situation and had to make an agonizing decision. I try hard not to say things that make things any harder for people. You know the truth and you aren’t morally obligated to tell people anything more than your child was very sick and died at/before birth. Have you learned anything in the 3 years that you wish now you could tell your self back then? What would that be? I will be honest that my pet peeve in all of this is when either side misrepresents the truth of these babies experiences to try to sway parents one way or another. I have read articles which claim that palliative care births late in pregnancy or terribly painful and there is a lot of “gasping”/suffering but that has not been my experience. If anyone exaggerated their argument in order to sway your decision, those folks are in the wrong. My team has gotten really good at being a reliable truthful source for info to parents struggling with grave diagnosis. None of us need to carry any sin around for eternity…and there is no unforgivable sin…makes me glad that my tradition has a sacrament of reconciliation…we ALL need it. I wish you healing and wholeness.
I appreciate every single word written. You have captured this experience beautifully. I am lost for words, but thankfully for yours. I can use this.