Stillbirth is not miscarriage

Those who have not gone through a prenatal loss often lump all prenatal losses into the same category: "miscarriage." We've heard things like, "How's Jamie doing since the miscarriage?" or, "My friend had a miscarriage recently too."

Miscarriages are tremendously painful. My sister-in-law had 2 miscarriages last year and at Kaylee's service, I noted that she had 2 cousins to greet her in heaven. My brother and his wife were probably more emotionally impacted by Kaylee's death than any of my other siblings because they could relate to that loss in a way that was more understanding. Pointing out the difference in stillbirth and miscarriage does nothing to diminish the significance of a miscarriage.

But a stillbirth is not a miscarriage.

For the purpose of this post, I'm including "preterm deliveries" in the same category as "stillbirths" since some babies who are lost prenatally are actually born alive for a short time and are therefore not technically stillborn. These infant losses are usually cases in which a known birth defect will not allow the child to live for more than a few minutes or hours outside of the womb.

The National Center for Biotechnology Information (NCBI) defines miscarriage like this:

A miscarriage is the spontaneous loss of a fetus before the 20th week of pregnancy. (Pregnancy losses after the 20th week are called preterm deliveries.)

I suspect the clarification regarding the difference between a pre- and post-20-week loss is due to confusion that people have. I also suspect this confusion is because miscarriage is so common, so it's the term people know.

And this is part of what makes stillbirth so different from miscarriage: miscarriage is a relatively common event. Many couples wait to announce a pregnancy until after the first 10 to 14 weeks gestation, knowing that their risk for a prenatal loss has significantly dropped after the first trimester.

The NCBI underscores the commonality of miscarriage with this data:

It is estimated that up to half of all fertilized eggs die and are lost (aborted) spontaneously, usually before the woman knows she is pregnant. Among those women who know they are pregnant, the miscarriage rate is about 15-20%.

By contrast, the rate of stillbirth is less than 1%. Here's a summary from Wikipedia:

The mean stillbirth rate in the United States is approximately 1 in 115 births.... In Australia, England, Wales, and Northern Ireland, the rate is approximately 1 in every 200 births, in Scotland 1 in 167.

I should point out that a more common definition of stillbirth in other countries is any baby who weighs more than 1 pound (weight determinations vary from 350 to 500 grams). More broadly, online forums usually simply divide the two categories of prenatal loss into "miscarriages" and "2nd and 3rd trimester losses."

So it's well-established that miscarriage is far more common than stillbirth and that one occurrence is generally considered to be before 20 weeks gestation and the other is after. But still, a loss is a loss, right? Are the two losses really that different? Why get particular about the technical definitions?

We have friends who have had the awful experience of going through both a preterm delivery and a few miscarriages. They talk about the miscarriages as a footnote of life. By contrast, they often speak of their son who died at 28 weeks gestation. They have pictures with him on a wall in their home. They reached out to us as soon as they learned of Kaylee's diagnosis to relay their own experience with a preterm delivery.

Life is no less real in the first trimester of pregnancy than it is in the second or third. However, our experience with the child certainly changes in that time and we become more attached to the baby we're waiting to meet. Here are just a few things that make the connection to the baby so much more significant later in pregnancy:

• A baby bump develops (~12-16 weeks)
• Gender is often known (~16-20 weeks)
• Baby kicks (~16-22 weeks)
• Baby becomes viable outside the womb (~23 weeks)
• Baby is often named

These are just a few of many developments that bring us closer to the baby we're about to welcome into the world.

Each one of us loves our children dearly from the moment we see that positive pregnancy test. Each one of us grieves our prenatal losses, the children we never got to meet here on earth.

But I've never seen a memorial service or a funeral for a child who was lost in the first trimester. A baby lost within the first month or two rarely has an empty nursery waiting for them. Parents of miscarried children have just begun to dream of the life they're going to give their new babies; parents of stillborn children have often purchased the going-home outfits, built the cradles, and bought the car seats.

Of course, there are exceptions to every rule. For every 5 people who reached out to me with their stillbirth story, 1 has reached out with their story of miscarriage. Miscarriage impacts each person who goes through it differently. For some, miscarriage is a footnote of life and for others it's one of the most significant events they've gone through. But while each family's experience with stillbirth is also different, I have yet to meet a parent who has gone through a second or third trimester loss and has not been permanently and tremendously affected by it.

Stillbirth is not miscarriage. Miscarriage is not stillbirth. No parent going through either experiences wishes to be in either camp, but no grieving parent wishes their camp to be confused with the other. To understand the place in which each prenatal loss falls is to understand just a little more what each family is going through. For the sake of grieving moms and dads, the distinction is worth understanding.

The pain of survival stories

When you go through a significant loss, there's nothing more helpful than the support of friends, family, and even strangers. While some well-intended comments aren't very supportive, I try to remember that the intentions are good, and honestly, I'd rather people say something and have it be relatively unhelpful than say nothing at all out of fear of saying the wrong thing.

Something that we've heard on a recurring basis is survival stories. Just 3 days after Kaylee was born we were at a concert. One of the songs was about a couple who was told their baby girl, 6 months along at that point, may not make it to birth and even if she did, she probably wouldn't make it past a year old. She's now 10 years old and doing fine.

Other stories have involved micro-preemies who've lived or people with Turner syndrome who are fully-functioning adults. I realize these stories remind people of Kaylee and they're just passing that along. They're just letting us know that they're thinking of her.

But each time I hear one of these stories, I'm reminded of the survival that didn't happen for us. This isn't to say that stories of pain and death are comforting to us in any way. But stories of survival are tough right now, and they're that much more difficult when they're linked to Kaylee.

The loss of Kaylee is still raw. Survival stories are one more reminder of just how raw it is.

The closest we'll get to hell

Jamie was talking to a friend at church who had read my post last week on moving on with life after Kaylee. She said to Jamie, "Maybe this is the closest we'll ever get to hell."

A month ago I was talking to a friend of mine who lost his son at 28 weeks. He has also lost his father and since I've never gone through the loss of anyone in my immediate family, I asked him which loss was harder. He simply responded, "I've never gone through anything as difficult as losing my child."

Sunday morning was good. We got to church 10 minutes early with plenty of time to drop our kids off at the nursery and find a seat. The songs were good, the message was good, the songs at the end were good. Things were good!

Then I lost it. I don't remember why or even the song we were singing. I do remember being suddenly very conscious that my daughter was not in my arms. She was born but she's not here. I broke down crying. I'm not much for crying, especially in public. It felt even more awkward given that I was sitting in the front of the church.

But you don't choose the moments this hell knocks you down. You think after your first day without crying that just maybe it'll be smooth sailing from here. Then 5 days later you run into the toughest day you've had and you can't even put your finger on why the day was tough.

Death is as close as we'll get to hell on earth. Experiencing the death of someone close to us is a small taste of that hell. I don't wish hell on my worst enemy.

"Moving on"

Jamie sent me this quote that she saw on Facebook today and it really resonated with both of us:

"It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."
~ Rose F. Kennedy

Yesterday was our first day in over a month with no tears. For some that probably seems too soon. Others may wonder that it took so long. There is no formula for grief.

I had a dream Friday night - well, Saturday morning to be exact - that Kaylee Hope was born, but the circumstances were much different. Details of the dream are a bit foggy. She had some issues with the skin behind her neck and head. I think she had some issues with her internal organs. The issues weren't the same as what she actually had, but they were similar enough.

What's not foggy is that she was alive. She was breathing. She was going to be okay. I was able to hold her and watch her BREATHE!!

Every night when we go to bed we check on our kids. I always check to make sure they're breathing. There isn't a night that I don't feel a sense of relief when I see them stir or hear them breathing loudly through a stuffed nose or feel their gentle breathing as I touch my hand to their back, chest, or face.

Flowers that have been sent for Kaylee are dying or have died. Her name on one of my wristbands is fading, so I had to take it off. Meals aren't coming every day anymore. As we take each step, we leave a part of the grieving process behind us.

But we still have a whole lifetime ahead of us. Moving on is not forgetting. Moving on is just what we do every day. When people say, "Move on," they're simply saying, "Make forward progress."

So we move forward, with each day bringing fewer tears. But the memories linger. The joy of her life and the pain of her death remain. And as we move on, we will always carry her with us.

Moments of raw emotion

I'm not generally a very emotional person. A tear wells up every once in a while - maybe weekly? - at something simple like a sad story, but that's typically about it.

I haven't been very emotional about Kaylee Hope's death lately. It's made me wonder if I didn't love her enough, if she didn't mean enough to me, if our loss really wasn't that big of a deal. I actually questioned on a few occasions whether we should be doing a memorial service.

A friend says these are "little lies" that are a part of grief. Thankfully I had a few moments Saturday in which I was reminded that those thoughts really are just lies. Here are 3 of those moments:

1. Shortly before Kaylee Hope's memorial service I was setting up a laptop in the back to run a video I had made for her. I was alone and took a moment to scan the sanctuary. I saw a few people taking photos of the table in the front that had some photos of her, a family photo of all 5 of us, a blanket of hers and some other things. I slowly started to lose it. It hit me in that moment: these people are here for my daughter. THIS IS SO WRONG!! This isn't how this is "supposed" to work. You're supposed to see pictures of someone with gray hair in the front, not a little hand the size of my fingernail forming the sign for "I love you." The eulogy is supposed to be given by a high school friend; the family member speaking on behalf of the family of the deceased should be a child. The father of the deceased should be deceased. I think that was the first time that the significance of the service really sunk in.
2. I spoke at the service. I simply read letters Jamie and I had written to her over the last few months, some from before we learned of her diagnosis and some after. I was nervous about it ahead of time. I thought the letters might get boring or that that I'd be void of emotion as I read them. Whether or not the letters were boring, I certainly wasn't unemotional. I was reminded very quickly of how much that little girl means to me.
3. When we got home at around 1:00 AM that night we found a package that was sent to us anonymously. It was a framed piece that had a purple flower, our daughter's name, and the meaning of her name and its origin. It was so simple, yet so meaningful to me. Oddly, I think the inclusion of the simple word "slender" is what hit me the most. I just stared at it as I sat in my car by the mailbox, considering the thoughtfulness of the gift and wishing so badly I knew who to thank for it.

Those were a few of my moments that day. They aren't all of them. There's no way to capture them all. And a post on raw emotions from my wife would look very different, as would a post from any other father who's not able to hold his child.

People ask a lot these days how I'm doing. Most days, things seem normal. I don't feel an ever-present sense of grief.

But there are moments with tears. The most seemingly random, everyday things make me think of my baby girl. And there are other reminders that life is not really quite "back to normal" yet. I've been getting tired in the middle of the day, regardless of how much sleep I had the night before or how well the day seems to be going. I wake up in the middle of the night for no apparent reason. And of course, we still have supporters bringing us meals, praying for us, and helping us in other ways. It's not that things are automatically back to normal when these people stop coming or when I'm sleeping through the night again, but these things serve as reminders that "normalcy" has not yet returned.

The only thing predictable about emotions in grief is that they will come. What's not predictable is when, how often, or for how long.

The little things

It's the little things that get me lately, that bring memories and thoughts of Kaylee Hope flooding back.

Keira isn't generally very cuddly, but the other morning she saw Kaylee Hope's stuffed lamb - a gift from a friend at the hospital that has come to sort of represent Kaylee Hope in our house - and she grabbed it and snuggled it up to her. Then she kissed it on the nose and cheeks, then snuggled with it again. We were moved to tears as we thought of how that should really be her sister she's holding, not just a stuffed animal!

Yesterday I read a line in a blog post that I've seen numerous times before: "Enter the daughter. Extra X chromosome musta been working." I'd never thought twice about the "extra X chromosome" joke. But it leaped from the screen, reminding me of that X chromosome that my daughter was missing, the missing chromosome that ultimately took her life.

A coworker was wearing purple yesterday. So are at least 5-10 other people I see every day. I always wonder if it's for Kaylee Hope. I wonder when I won't wonder that.

These are small things. These are trivial things. But these are the things that remind us of the daughter we no longer have.

Memories are necessary. They remind us that she lived, that she was with us. But they bring us to tears. As they remind us of what we had, they remind us of what's gone.

I love the little things.

I hate the little things.

The path forward

Now that we know what we know - that our little girl has Turner syndrome and isn't likely going to survive more than a month or two - what do we do now? What do the next few days or months look like? What does the immediate future look like? Of course, there are still things we don't know for sure, but we have to start to wrap our heads around what the short term will look like.

I've had over 10 times the normal number of visitors to my blog reading the story of our little girl over the last 2 days. We're humbled to say the least. And while this blog has been and will continue to be a tool used for us to communicate what's going on, fundamentally it will still remain what it's always been.

This means that among the updates on Kaylee Hope, there will be occasional stories of Carson and Keira. Tomorrow, as with every Saturday at 6:45 AM, a video will be posted here that I scheduled weeks ago. At 6:45 AM on Sunday there will be another weekly photo. Monday through Friday I'll post on anything from politics to faith to casual or humorous observations.

Of course, updates on Kaylee Hope won't go away. And for those of you who are here only for those updates and aren't interested in the other things I write about, I've assembled and will continue assembling all of my posts on Kaylee Hope in the right sidebar under the heading, "Our Journey with Kaylee Hope." Hopefully this helps those coming to this site for those updates with an easy way to read her entire story without filtering through the other content I post on here in case that doesn't interest them.

Right now, we simply need to respond to all of you. We've had an amazing outpouring of support. We have Facebook messages and posts and chats, tweets, text messages, phone calls, and emails to reread and respond to. I apologize for our delay in responding but we've really had more than we've been able to adequately address. Our hope is to spend a few hours in a coffee shop this afternoon before picking up our children to organize those responses and respond to as many of them as we can.

From there, we have a lot of decisions to make and some settling down to do. We're doing our best to live life vivaciously with our baby girl, but reality is we have to plan for the worst. What's hard is we don't want to think about these things, and yet we don't want to regret the decisions we make. You can't reverse decisions like burial vs. cremation vs. whatever other options exist. I'm having a hard time even wrapping my mind around it right now and accepting that it's a decision I need to make. I just tried entering a Google search for "options for disposing of a"... I couldn't finish the search. Go ahead, try typing it out yourself. Try to actually put those words on the screen. Then try pressing "enter," knowing that search is now saved in your Google search history, knowing that when you start typing "options" the remainder of what you searched for is going to show up. Consider that every web resource you've visited for dealing with this is now in your browsing history, showing up when you start to enter any website that starts with the same letters.

This is just a small part of what's going through our minds. I'm sorry if that depiction seems too real and too personal, but it's a small part of what this looks like.

And there are so many similar decisions. We have to figure out who our care provider will be for our weekly visits going forward. I'm trying to think of how to maintain professional and personal boundaries with my clients at work, who will need to know that I'll be out of the office unexpectedly sometime in the next few months. And of course, some of them already know that we're expecting a baby in July, so I need to figure out how to respond when they ask about her. We need to find a balance between taking people up on offers of child care and meals because we're really in need of it and setting aside family time alone together with normal everyday routine.

The road forward will simply not be the same. Jamie gives me a card every year for our anniversary with reflections on the past year. The card she gave me last night included this:

Part of me feels like this was our last "normal" year and to finish this letter is to acknowledge that moving forward we'll never be the same. I know that it could be a really good thing, but I'm not there yet. Right now I'm just really hurt.

I think more than anything we'll simply find a new normal. This experience leaves a stamp that I don't believe will ever go away. While my posts about Kaylee Hope will be fewer as time goes by, I don't imagine they'll completely go away. She'll stick around in some way, whether it's through future reflections on coping with grief and pain or celebrations of her life on her future birthdays or when we hang her ornament on the Christmas tree.

I don't know that the path forward will be dramatically different from the path we've traveled, but I'm sure there will be new scenery along the way. I was recently reflecting on how easy my life has been and how little turmoil I've really experienced. I can count the number of funerals I've been to on one hand. This is all so very, very new.

Regardless of what the path forward looks like though, it will include Kaylee Hope. She's a permanent part of our lives and I'm so thankful for her.

An update on Thadwick / Miss Beautiful

We had a level 2 ultrasound this morning that essentially confirmed what we learned yesterday and provided some additional information.

We don't have a conclusive diagnosis of Turner syndrome, though there are signs that could point to that. They weren't able to establish the gender but we should know that tomorrow pending some of the results from the amniocentesis.

Here's what we do know:

• There's excessive fluid buildup around our baby's internal organs and - well, all over. There's a large sac of fluid behind the baby's head/neck that's larger than its head. The doctor was an older man who said he's done over 10,000 amniocenteses. He said the amount of fluid in our baby is a lot - "up there" among the worst cases he's seen. That alone would cause any baby's heart to stop functioning due to the stress.
• The heart is abnormal. Only 1 heart chamber (maybe 1.5) is pumping. There are a number of potential reasons but it appears there's a heart defect that would prevent the baby from surviving as well.
• There's either one kidney or the two kidneys are fused.
• There isn't movement (or is minimal movement) in the feet and legs. The cause of this is unknown.

These are the major complications. Hopefully the tests will tell us if there's a chromosomal abnormality. If there isn't, there's not much we can know right now.

So those are the facts. I got emotional as I started to write this post and entered the names in the title. I wasn't emotional at all talking about the facts. I'm emotional again as the name "Miss Beautiful" crosses my mind.

Many, many people - more than I ever could have guessed - have asked how they can help. Our first request is for prayer. We need peace, grace, and healing in a number of ways. The most difficult part of our 2.5 hours at the hospital this morning was discussing with the genetic counselor what to do with the baby once its born. Funeral? Memorial service? Private time? Cremate? Burial? Dispose in some other way? These are questions we never imagined needing to answer 2 days ago and they made the end result very real.

What made this morning's experience at the hospital somewhat ironic is we were in the same office as we were a year and a half ago for our 20-week ultrasound when we found out we had twins. In fact, we had the same doctor and genetic consultant today as we had then. Of course, a year and a half we were crying tears of joy and laughter at the news of having twins. This time it's tears of sadness.

A woman in the waiting room was 12 weeks along and thought she may have twins. She was complaining about the prospect of having two and said (loudly enough for everyone in the room to hear), "Please dear God, just ONE healthy baby." I found irony in how the words of our prayers were really no different, even if our circumstances were night and day from one another.

A number of people have asked about meals. Meals are definitely helpful but it's hard to know when and how frequently we'll need them. We're heading to Duluth for a previously-planned (surprise to Jamie) anniversary getaway for the next two days (our 4th anniversary is tomorrow) and will be back Friday. From there, we have no idea what the road will look like. We still have a baby who's alive and a very tough road between now and when the journey for the little one comes to an end. We had friends bring us a meal and stay with us for a few hours last night and found it really helpful. Not only was it a distraction and an opportunity to talk about other things (as well as process through the whole experience with them), but having dinner prepared, cleaned up, and toys picked up at the end of the day was a huge help. It was so nice to just put the kids down and be able to be together with just the two of us - and, of course, our baby.

So I don't know what to say exactly. Do we need meals now? Do we need them in 2 weeks? Do we need them when this baby is born? I don't know the answers but if you would like to help, please let us know and I will try to coordinate it as best as I can. I have a number of offers through Twitter, Facebook, email, text messages, and phone calls and will try to organize them and respond over the next few days.

Thank you again for your sympathy, thoughts, prayers, and words of encouragement. This is devastating and heartbreaking for us, but we know we're not alone.

I don't know how much more news there will be other than the results of the amniocentesis and I'll post them here once we have them. Other than that, if there are any new developments I'll try to post updates here.

I love you, Thadwick

Today's post was supposed to be about a name. A few months ago my brother sent me an email referring to the baby we're expecting as "Thadwick." We didn't really have an "in utero" name for the baby and somehow - oddly - Thadwick stuck.

I had this post planned about baby nicknames, the names we used for our last pregnancy - we started with "Peanut" and switched to "Peanuts" when we found out it was twins.

Then we had our 20-week ultrasound yesterday morning. At our last 20-week ultrasound we found out we were having twins. This time we found out we will likely lose our baby.

I'm heartbroken. We're heartbroken.

I don't think I've ever used the word "heartbroken" to describe how I feel about anything. I don't think I've ever quite understood the term.

We'd discussed a few times how we felt like we weren't paying as much attention to this pregnancy. Running around after 12-month-old twins takes time and we've found ourselves noting, "We're already at 17 weeks! How'd that happen?" Last time around, we were just about counting off each day.

But yesterday we were awakened to how much this little one means to us. We're both overwhelmed by the love and affection we have for this child.

Within seconds of beginning the ultrasound the doctor made it clear that something was wrong. There was far too much fluid buildup. In fact, he seemed surprised that the child is still alive.

His guess is that the child has Turner syndrome. If that's the case, it's a girl (he wasn't able to determine the gender definitively, but that condition only exists in girls).

Most of what I've read on Turner syndrome - and it isn't much since the diagnosis isn't confirmed and I'd rather wait until it is to dive in - deals with the condition in children and adults. What I've found on babies with Turner syndrome in utero is fairly bleak. 3% of pregnancies actually start with this condition, but 99% of them are miscarried in the first trimester. (You can read more from the National Institutes of Health if you're interested.)

Again, we just have a preliminary prognosis at this point. We're hoping to schedule an appointment for a level 2 ultrasound today where we can hopefully get more conclusive information.

Either way, the prognosis from the doctor was tough to read:

Single fetus breech presentation with heart tones and movement is noted. The fetus has large septated cystic neck masses consistent with hygromas, large pleural effusions and ascites. The placenta is high posterior and edematous. Preliminary impression is Turner's syndrome and impending heart failure. The study is not completed and measurements are not done. The patient is referred to MPP

The words "impending heart failure" might as well have been bolded, underlined, and blown up to a size 60 font. That line keeps running through our minds.

The last 20 hours have been a roller coaster. We've cried. We've prayed. Friends brought us dinner. I read the baby one of my favorite board books, Moo, Baa, La La La!.

I have to find a new nickname if this is a girl. Thadwick won't do. But that's the least of my concerns.

I just want to hold her. I want to tell her it's okay. I want to make it better. I want it all to be over, to have her in my arms and take her home and bundle her up like all babies should be.

But chances are I'll never have that chance. And it breaks my heart.



I love you, Miss Beautiful. ("Miss Beautiful" is much better than "Thadwick.")

And I don't think it's cheesy anymore when people say their children with "birth defects" are "perfect." I realize now that they don't mean you're biologically perfect. They mean that they love you just as you are.

I hope you're not hurting. I cry when I imagine your tiny heart failing. I hope it's not. I hope you're okay. I hope if the prognosis is right, you don't feel any pain.

Whether or not you feel pain though, we feel it for you. We're hurting very much.

I love you,

Your daddy

The impact of grief on the outside observer

Grief is something I don't understand very well. I've never lost a parent or a sibling. I lost one grandparent at 17 but have otherwise had a relatively grief-free life.

Others have not been so fortunate.

This Sunday we visited a new church - well, new to us - and one of their elders had just lost a 35-week-old pre-term baby. Needless to say, the church was grieving.

Last week we had an appointment with our midwife for our own baby, who's now 13 weeks along. At some point the conversation turned to her own family and she told us of her 7-year-old daughter who she lost this summer to meningitis. She mentioned that we may have seen the story on WCCO. She showed us a picture and Jamie teared up just listening and imagining the thought of losing our own child at such a young age. Later, I found the story and her CaringBridge site and teared up more times than I could count by the end of it.

There are many other stories I've heard and seen over the last couple of years. A 10-month-old died due to a "freak" accident involving food lodged in his throat and becoming infected. Another story involved a full-term stillbirth. My brother and his wife have been through two miscarriages in the last year.

Each of these families has endured grief that has changed them for the rest of their life in some way.

What's the purpose of all of this? Why were these little lives brought into the world only to be taken away so quickly?

I can't answer why. I suppose that's the question that each of these parents wrestles with and hopefully eventually comes to terms with. Sure, I can give some textbook theological answer, but those answers are often rather insufficient when the real scenario is being played out away from the textbooks.

But I'm thankful that there are parents who choose to tell their stories. People like me need it. We need the perspective it gives us towards our own children, towards our parents, towards our siblings. We need it as a reminder the next time we start to lose it with our 10-month-old's fussing or our spouse's (or our own?) seemingly incredible stupidity. We need it when we're tempted to run out the door for work in the morning rather than lean in for a goodbye kiss.

Grief is hard, but we need to see it because it helps make us better at the relationships we have. We need to see it because we will experience it. We need to see it so we can walk alongside those going through it and weep with them.

Thanks to Chad and Bridget, Abraham and Molly, Chet and Priscilla, and many others of you who tell your stories. They mean more to the rest of us than we know how to tell you.