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.