So when I tell people Matthew’s story, most of them are like “WTF!?!” And then they ask questions. I don’t mind – I actually prefer inquisitive people, especially over those who keep their heads shoved up dark places.
But oftentimes people inquire, unaware there won’t be time to explain. Thus, I’ve created an FAQ list, so I can refer people here… Most questions are valid – smart even. Others, I’ve included for your enjoyment. And they’re all real.
NOTE – I will not turn this into a medical blog. But my blog discusses Matthew, and I receive these questions A LOT. For those who follow for crotchety underwear stories, I’m sorry – I’ll post more of those types later…
DISCLAIMER – I’m no medical professional. I’m just smart. And humble. And Mark and I are aggressive information seekers. I’m speaking solely from personal experience, answering these FAQs to the best of my abilities…
I didn’t know “this” (stillbirth) happened in modern times.
And, I didn’t know you lived under a rock… I’m living proof “this” happens, and I can find you others – in my town, in my neighborhood. Stillbirth occurs in the US ~26,000 times/year (~71 times/day). Our major metropolitan hospital dedicates a full-time nurse to “this”, and, sadly, she’s busy.
But this is like being struck by lightning, right?
Not really – your lifetime odds of being struck by lightning are ~ one in 12,000. One in 160 pregnancies end in stillbirth. Matthew wasn’t stillborn, so he doesn’t even factor into that stat.
Or maybe you should play the lottery?
If the odds of winning the lottery were one in 160, everyone would play.
This will never happen to you again, because that’d be like you being struck by lightning twice, right?
I pray to God nothing like this ever happens to me again. But experiencing one tragedy doesn’t afford me a Hidden Immunity Idol (see Joe Biden post).
Was your pregnancy complicated?
Nope – textbook.
Was Matthew healthy?
Yes – autopsy confirmed. The true knot +2 nuchal wraps in his umbilical cord cut off his oxygen.
But might Matthew have died for a reason? Like to spare him from a lifetime of suffering?
Sometimes healthy people die for no fucking reason at all. It’s called a tragic accident – akin to being hit by a drunk driver.
But how did Matthew die if you were in the hospital with him alive?
People die in hospitals all the time. I used to audit hospitals – the insurance claims reports were unbelievable. One time, a report showed doctors removed an organ from the wrong patient – he was pissed. Even medical professionals are human. Life is fragile – death cannot always be cheated.
After Matthew’s heartbeat crashed, how long did it take to get him out?
About 10 minutes.
Then why did the resuscitation attempt fail?
No one knows for sure, but we have some theories (see below).
Did Matthew ever take a breath?
He was born with a heartbeat of ~30, but he never took a breath.
If they’d performed the C-section just 20 minutes earlier, would Matthew have survived?
We’ll never know. But, we forwarded copies of his fetal heart rate (FHR) strips from our overnight hospital stay to a specialist, Dr. Jason Collins. Based on his review of the strips, Matthew entered into an intrauterine fetal coma ~24 hours before he died.
Dr. Collins believes the knot tightened early Sunday, cutting off Matthew’s oxygen supply. Rarely, a heart continues beating despite loss of brain function, which, in this case, would explain Matthew’s lack of movement and lack of response to stimuli. It also explains activity observed on his FHR strips – variable decelerations (v-dips), coupled with no significant accelerations.
Dr. Collins showed us a case study including a picture of twin FHR strips – one twin lived, and one twin died (after intrauterine fetal coma). Matthew’s strips mirror those of the twin who died. Thus, Dr. Collins, and we, believe had the C-section been performed earlier, the resuscitation attempt may have succeeded; however, the final outcome wouldn’t have changed.
But how did Matthew’s heart keep beating if he was essentially dead?
It defies reason. But it’s possible – I’ve found similar stories without even trying.
How did an experienced team of doctors at a leading metropolitan hospital look at these FHR strips all night and never suspect a problem – an intrauterine fetal coma?
They’d never seen it before – it’s the first cord death they’ve witnessed in real time. Oftentimes, once a patient arrives at the hospital, death has already occurred. It’s shocking they even admitted me after locating a strong heartbeat.
Can true knots and other potential umbilical cord issues be seen on ultrasound?
Yes. But in the US, doctors don’t even look for them. They claim it’s too difficult to image the cord – the baby’s lifeline. Even the best doctors admit they DON’T notify patients of potential umbilical cord accidents incidentally witnessed on ultrasound.
But isn’t the US the worldwide leader in medicine?
Not in the obstetrics field. Other countries do far more in the areas of ultrasound imaging technology and stillbirth research and prevention initiatives.
What, and why, in the actual eff?
It’s true – the American Congress of Obstetricians and Gynecologists (ACOG) is governing body of OBGYNs. Imaging cord pathology on ultrasound is NOT part of ACOG standard of care. Thus, doctors simply check once for presence of cord blood and oxygen flow.
Why is standard of care so low?
Our culture is litigious. By holding standard of care low, ACOG makes it harder to bring legal action (i.e. it’d be nearly impossible for me to win a lawsuit against my doctors for missing the true knot on ultrasound, when imaging cord pathology isn’t part of ACOG standard of care). Thus, standard of care remains subpar, and patients suffer.
How does ACOG get away with this?
Too few patients demand better. Most bereaved parents are told, “These things just happen sometimes.” That’s true, but until more patients demand better, research and developments related to stillbirth will remain stunted.
If you would’ve asked your doctors to image Matthew’s cord pathology, would they have?
No – they would’ve explained, “Even if we saw something, there’s nothing we could do about it.” Then they would’ve laughed in my face.
Is it true nothing can be done about a potential umbilical cord accident noted on ultrasound?
Yes, and no. Doctors can’t untie a knot in utero. What they CAN do is monitor pregnancy with additional non-stress tests (FHR monitoring) or biophysical profiles. Upon detection of distress, early induction or C-section could be considered.
But aren’t 33% of babies born with nuchal wraps?
Yes – something like that. And true knots are often incidental findings upon deliveries of healthy babies. But nuchal wraps and true knots can also cause deadly cord compression. As a patient, I’d prefer potential issues be communicated to me – I’d prefer being offered extra monitoring over my outcome.
So was Matthew’s death preventable?
Potentially. These deaths are tragic accidents. And all tragic accidents are preventable with the benefit of psychic abilities. Like if you knew an airplane was going to crash into your house tomorrow night, you’d just leave before it happened, amiright? But most people aren’t psychic.
We did the best we could with the information we had at the time – that’s all anyone can do. I acted responsibly, and my doctors acted competently, within confines of standard of care. It would’ve been almost impossible to force deviation from standard of care for no apparent reason. So no, it wasn’t preventable.
I only say “potentially” above because, in any subsequent pregnancy, I’ll take additional measures not afforded to me this time in hopes of a happier outcome. And I’ll be forever tortured by not having been afforded those same options with Matthew (but, again, hindsight’s always 20/20).
If you ever get pregnant again, won’t you be so scared?
I don’t know… What do you think?
But next time you’ll be monitored “high risk” to make sure everything’s okay, right?
I was monitored high risk THIS time (for an eventual nonissue). I had five ultrasounds – never once did they image the cord.
But doctors will image the cord next time, right? Since that’s what killed Matthew?
You bet your ass they will – but, sadly, only after I put up a fight. I’m already receiving pushback during hypothetical conversations. I know loss families who, for their subsequent pregnancies, shopped seven doctors before finding one who’d agree to image the cord (in a major metropolitan area).
So if monitoring “high risk” wouldn’t normally include cord imaging, what’s the point?
They’d perform extra ultrasounds and throw them in the file. In the event of a bad outcome, they’ve covered their asses.
Well, you can just buy a doppler next time – to monitor yourself, right?
I watched my baby die. In the hospital. While strapped to a medical grade FHR monitor. A fucking doppler does nothing for me. Dopplers seldom detect distress – monitoring fetal movement is far more crucial.
What could ease your mind next time then?
There’s a new device doctors don’t want patients to know about (legal liability) – I’ll post on it soon. Additionally, I’ll consult with Dr. Collins during any subsequent pregnancy. But, really, nothing could truly ease my mind.
Can’t you just trust your doctors?
I do, and I don’t. My doctor is amazing, but she’s human, bound by ACOG standard of care. She’ll watch out for me. But, most importantly, I’ll watch out for myself, demanding highest and best care.
All this sounds like you’re trying to control the situation. Only God is in control.
I’m well aware that, as humans, many things are outside our control. But I will do everything in my power to ensure we aren’t re-victimized by the same tragedy. What’s my alternative? To do nothing? You wouldn’t tell someone fighting cancer to “give up trying to control the situation”, so don’t come at me with that bullshit.
Should I worry about stillbirth happening to me?
If you’re looking for reassurance, I’m not the one to ask. But maybe. Most worry about death from prematurity, SIDS, etc., even though stillbirth is far more common. I never expected my perfect pregnancy to end this way. And since Matthew died, I’ve met many loss moms – they’re some of the brightest, healthiest women I’ve ever encountered. This tragedy does NOT discriminate.
There are inherent risks to life in general, so I don’t know if I’d totally freak out. But I can tell you: (1) it’s alarming that doctors aren’t always leveraging available technologies, and (2) doctors aren’t necessarily looking at ultrasound images as closely as you might assume.
What if I’m worried? Should I talk to my doctor?
Yes – you should always share your worries with your doctor. If more patients asked questions about ultrasound imaging and stillbirth, doctors, and ACOG, would be forced to pay attention.
How do I get my doctor to image the cord?
Ask. Be persistent, and possibly aggressive. Or contact Dr. Collins to ask his advice. Even if your doctor doesn’t ultimately image the cord, you’ve still made a difference. You’ve made him/her think.
This all sounds very alarmist. Pregnancy is natural. I am healthy.
Maybe so. But I am alarmed! Because I ended up on the wrong side of statistics.
But I am a loss mom too, and my doctor told me not to worry – it won’t happen again.
It probably won’t. But we all have different personalities, and we’ll all deal with, what are sure to be scary, subsequent pregnancies in our own ways. I’m a researcher and skeptic, and I’ll end up taking an aggressive monitoring approach – it’s in my personality to do so. However, I know and respect that everyone is different – each woman will choose an approach she feels is best.
End of FAQ session.
Did I miss one? Leave a comment.
24 thoughts on “Matthew’s death FAQs”
I’m so sorry for the loss of Matthew. I absolutely identify with all you’re saying here. I spent so much time fact finding and hunting for stats and it was so hard ultimately to know there was nothing, no obvious reason. Absolutely spot on when you say ‘Sometimes healthy people die for no fucking reason at all.’ Just this and so hard to accept.
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Thank you so much. Yes, I think it’s especially hard to be told either “no identifiable reason” or be given a “tragic accident” type reason, because those “reasons” don’t make sense. They provide no comfort. They’re hard to accept. I still haven’t fully accepted. It’s interesting that some people can look at the world and NOT see this – they must assign reason to everything. But life can be cruel, senseless, etc. for no freaking reason at all sometimes.
I am hopeful that in the coming years, the medical community will do more to investigate and possibly cut down on the number of deaths. Crazy things will still happen for “no reason”, because that’s life. But if, somehow, statistics could improve, that’d be nice.
So spot on…all of it.
And yes, you missed one. How are you so awesome?
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Thank you, my dear friend. And you are too sweet, and so awesome 🙂
Hugs to you, Christine
The part about pregnancy being “natural” and me being “healthy” making me free from this risk hits me hard. I was really emphatic about having low interventions with my first pregnancy and I was worried that having too many ultrasounds could have some kind of adverse effect on my baby. (This had a lot to do with the childbirth class I took while pregnant with Eliza that is the source of SO much guilt and trauma for me). I trusted my body and the natural process of pregnancy and it totally fucking failed me and my baby. With no clear explanation as to how or why we lost her. I trusted my doctor, but the truth is that another pregnancy is an enormous leap of faith, and it’s really, really hard to have faith when everything you believed in last time (low interventions, first-world medical care) ended up costing your baby his or her life–or at least not preventing his or her death.
I hate when people try to find a “reason” so that they can fit your tragedy into their comfortable narrative for the way life works. (I bet Syrian refugees and rape victims and many other people who are suffering from senseless tragedies also feel the same way about the idea that “everything happens for a reason.”)
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Amen to this. I was always scared of pregnancy, but after everything started going SO WELL for me, I started to trust it all too… I too was worried about the risk of extra ultrasounds, etc. There’s so much in the media saying all those things could be bad, so I was worried that my “high risk, not high risk” thing was putting Matthew at risk. Really, all my extra ultrasounds were fine, though they didn’t prevent his death. And now that I have (we all have) ended up on the wrong side of statistics through NO fault of our own, it doesn’t seem like this “natural, healthy, risk free” process anymore. I think people who say those things to others need to zip it, because, really they’re just lucky to be able to even have that opinion. All our pregnancies were super healthy, textbook too… Until they weren’t…
I too hate it when people try to find the reason. We had someone email us to specifically tell us Matthew died for a reason. Pretty easy and convenient – to assign a reason to someone else’s tragedy. Agree there are many tragedies going on in the world for no reason at all – just senseless.
Christine this is awesome information! We didn’t have a cord accident but most everyone I know that has lost a child did and it angers me so much that they do not give more in depth ultrasounds to catch potential problems. It is so upsetting that only after a women has a loss she is then considered high risk and they will take better care of her the next time around. Doesn’t make sense. Thank you so much for sharing this!!
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Thanks so much for your comment! I’m so glad you found this information helpful!
It is very upsetting. I think it is important to know that many doctors are smart, awesome people. And they care about their patients. But they’re human, and also, the reality is (which most people forget) is they have outside factors to also consider (ACOG, legal liability, etc., etc.) in addition to a patient’s well being.
Regardless of cause of loss (cord accident or not), or even if you’ve never had a loss, to get the highest level of care, it’s best self-advocate hard for it. Yes, it is very sad it often takes a loss to get the optimal level of care. I don’t think that should be the case. But even after a loss, even being monitored high risk, it’s best to remain inquisitive. Sometimes being monitored high risk can turn into just more pictures for the file – our questions / concerns are always valid and should be brought to their attention.
Wow thank you for all your honesty and I am truly sorry for your loss. I am a grandma to Blake who had a tosion cord. Am I mad, dang right but that won’t bring him back. But voices people speaking out about this just maybe we will get someone to listen and protect the babies. We need to raise the awareness on this because far too many babies have this issue and nothing is being done. My daughter is due Nov 24 and I WILL not be silent. I am scared to death that this nightmare can happen to us again. And the doctors and nurses should be educated on how they treat and talk to these mothers. Don’t tell us it will be alright, you are in the last stretch, she is perfect……we heard all of these responses and that does not make me feel better. I know the statistics I am scared. Faith my faith can move mountains but that has nothing to do with how you grieve. Teach and educate the professionals teach them compassion and get the information out to these moms what they need to watch for. Shame on our government, the medical industry and anyone else who does not think stillbith should be taken seriously. They did something with SIDs, 26,000 babies come on make a change their lives matter.
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Thanks for reading and for commenting. I am so sorry for the loss of your grandbaby Blake. We absolutely need to raise more awareness. 26,000 is a huge number, and yes, their lives matter. I agree – it isn’t really a comfort to be told everything is perfect when everything was perfect the last time around too. Not sure how doctors can think that is comforting. I am sending well wishes to you and your daughter and hope come Nov 24 she has a healthy, screaming baby in her arms.
I am proof that lightning can strike twice. I lost my daughter to stillbirth at 38 weeks (velementous cord insertion with complete rupture of vessels) 14 months later I lost her sister to a prolapsed cord at 40 weeks. It freaking sucks and I am the person no one wants to talk to after hearing my story. It’s scary. I have gone on to have 2 healthy living screaming baby boys but you bet I kicked and screamed and cried until they monitored me to my comfort level. Even got them to image the cords multiple times with both. HUGE hugs to you and thank you for being a voice for babies and mamas.
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Thanks for reading and for commenting. I am so very sorry for your loss of your two precious babies. It is just heartbreaking that anyone would have to suffer this kind of tragedy more than once. Just so tragic. Life can be so cruel, and I am just so, so sorry.
I can imagine how scary those subsequent pregnancies must have been (I’m already so terrified just thinking about it). I am glad you fought your doctors until they monitored you to your comfort level. It’s sad that it can take such a fight, especially after all the pain we have already endured. Sending you love and light, Christine
Wow, thanks for sharing this, i doubt it was easy and really sorry for your loss. i imagine some of the questions you constantly get must be so frustrating and anger-enducing from “well-meaning” people. People can be real crapfaces sometimes. Sorry for that too.
i don’t know if this is something you’d find useful or helpful now or at a later stage but i actually have a page on my blog called Taboo Topics where i invited a number of my friends to simply share their stories about losing a baby which i know was super encouraging both for them and all those who have since read the stories.
anyways, thanks again, there is a lot of pain in this i’m sure and just trust that your voice on this will help many others out there
love brett fish
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Thank you so much for reading and for commenting. Yes, it is not always easy to share all this, but I feel it is important, and I find just a bit of comfort from writing, which is a win for me now days.
Yes, people can be crapfaces. I try to remind myself that most are well-intentioned, but it can still set me off sometimes.
I will check out your blog. That is great that you invited your friends with loss experiences to speak out. I am sure it helped them, as well as many others. Thank you for your concern on this topic!
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I am so sorry for your loss. I think of you, Mark and Matthew often.
Your blog has made me cry, laugh and notice bluejays.
I hope you continue to slowly heal, grieve and process the loss of Matthew through your writing, you truly have a gift for expressing yourself.
Here is an article that made me think of you (and some of your coworkers) http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason May you keep finding the people who will just be there with you, even if it is for five seconds each day in the parking garage.
Sarah (Sam’s mom)
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Thank you so much for reading and for your kind words. It brought tears to my eyes (in a good way) to read you think of us and that you notice bluejays 🙂 Thank you so very much for that!
And thank you so much for sharing that blog post too! It is excellent. And so timely! Everything DOES NOT happen for a reason. Life DOES NOT always make sense. I think it is interesting (and maddening) how people conveniently assign reasons to others’ tragedies so they may feel better. If a co-worker pisses me off too much, I may forward this on 🙂
And, yes, Mary’s kind, but knowing, half-smile as I enter the parking garage continues to provide me comfort. It’s weird how sometimes you can tell a random stranger just gets it.
Sending love and light to you,
I stumbled onto your blog from another baby loss mama via Instagram. I admire your ability to compile your thoughts and emotions into what seems like a very cohesive blog so soon after your sweet Matthews passing. My first, Bella, was born 10/3/2014 and passed 3 days later. I was 41.4 weeks and planned a home birth. Ultimately it seems like cause of death for both has some similarities and yes it is extremely aggravating. I labored at home and after getting stuck at 7 cm after 32 hours of labor I transferred to a hospital. I got all hooked up and received my glorious epidural and Bella looked great on the monitor. Long story short, I had the prefect pregnancy nothing was ever wrong , I was 28, and we should have had a healthy baby girl. About 30 min after my epidural her heart beat plummeted and then picked back up. They reviwed the strip and chalked it up to the epildural. Meanwhile in just those 30 min I was fully dilated but they wanted me to ” labor down” ( why didn’t I just start pushing?) the put the monitor on her head inside to better monitor her and then 5 hours later her heart beat dissappeardd. She inhaled merconium. I pushed her out in 3 pushes and they tried to resuscitate her , they did after 20 min. But that was too long, she was brain dead.
They told me , ” these things happen” and must have been a cord accident except there was no knot and there wasn’t anything around her neck.
Fast forward , by Gods grace we got pregnant with her baby brother. Yes I battled fear each minute, but I knew it was worth a chance, a chance at hope , at being a mother again. So yes, we had 2 high tech ultrasounds , they basically charge you 1,000$ to just poke around but I came in with my list.
How does the placebta look?
Where is the placement?
Cord blood flow?
Cord insertion into the placenta?
Length of the cervix?
All this and more was checked because I came with a list. I also changed OB’s and hospitals. I had 2 of these high tech ultrasounds and then the last 6 weeks of pregnancy I had biweekly NSTs ( not convinced this really helps) and weekly ultrasounds to check my water while I still made them check my list, even though the tech wasn’t the “specialist”. Fast forward – we chose elected c section I just couldn’t imagine going through labor. Our son is happy and healthy praise God. But, still, if we choose to go down this road of the unknown again I don’t know what we would or wouldn’t do differently. We had joked about going to Asia, some countries there have a lower infant mortality rate than the US, just insane…
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Hi Laura, Thank you so much for reading and for commenting. I am so very sorry for your loss of your Bella. That is just heart wrenching. Congratulations on Bella’s baby brother.
Thank you for your compliment on my blog – many times I feel I’m a complete train wreck still, but somehow, blogging is good therapy for me. And much of my drive to keep going, and any level of cohesiveness, is fueled by anger. I am very angry about what happened to Matthew and by what happens to others. It’s obvious I’m angry about my son’s death, I think, but much of my anger is directed at the medical community. Not my specific doctors – more the way things work in our country. I want to parent Matthew by bringing attention to this.
I think it is very smart that you demanded they look at those things (awesome list). So many are told “this just happens”, but I want to encourage everyone to do their own research and watch out for themselves, as you did. Some doctors will NOT look at these things unless we specifically ask.
You are correct – while stillbirth exists in other countries, many countries are doing more prevention-wise. I actually spoke with Dr. Collins yesterday. He says India “gets it”, China “gets it”, etc. And also, yesterday, my OB told me about prenatal care patients receive in Israel (seems better than in the US). It’s shocking really – I think many in the US believe the US is the leader in everything, which is just not the case.
Thank you again for your sweet comment,
My daughter was born sleeping 5 weeks ago. My husband and I created a petition on the White House website to encourage the federal government to declare this a national health crisis and create better guidelines for OB doctors to perform better screening of high risk pregnancies. Please take a minute to sign the petition and share with your Facebook friends. Together we can make a difference and work to decrease the number of families that have to live with this tragedy. We have 30 days to get 100,000 signatures in order to get reviewed by the White House. Thank you for your support and for helping get the word out.
Declare stillbirth a national health crisis and develop guidelines to advocate better screening….
Each year, nearly 26,000 babies are born stillbirth. Most of these babies are of a viable gestational age.…
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Hi Jill, I am so sorry for your loss. It is truly heartbreaking. I think I read your story on the Star Legacy Foundation website – so tragic. Thank you for starting that petition and for bringing awareness to this cause. I hope we can get the signatures. We signed it, and my husband shared it on Facebook. I also shared it in the Resources section on my blog.
Your FAQs are questions that I frequently get as well. I can’t tell you how many times people have said that they thought “these things didn’t happen anymore”… or how many times people have (not so) subtly asked me if I did something wrong. We recently became pregnant with our rainbow baby, only to miscarry at just 6 weeks. Needless to say, we are devastated all over again. I do know, though, that when I first became pregnant with our rainbow baby, I must have called the doctor several times with questions. If how I acted during that short time is any indication of how I will act in another subsequent pregnancy, I know that I am going to feel like a lunatic— but I don’t care. I am going to request all of the extra monitoring that I can. I, too, have been told that another cord accident would not likely happen to me again, but that’s not enough for me. More needs to be done for sure. Sending hugs to you.
Christine I am so sorry for your loss. I live in Toronto and work in the Women and Babies unit at Sunnybrook hospital. You may be interested to hear we have a new initiative to help mums who have experienced a late loss or stillbirth. We are working with a similar project in the UK. It is an inter professional approach to ease mums through subsequent pregnancies as best we can. They do not have to wait for ultrasounds, are not asked the same questions over and over again and have access to checking on their babies as often as they like. I am so proud of you for sharing your difficult journey and advocating for mums and babies.