Motherhood is all consuming.

Having babies, nursing, feeling the fear of loving someone that much, and there's this baby on your chest, and boom, your entire life has changed.

It's a privilege of being your child's safest space and watching your heart walk around outside of your body.

The truth is, I can be having the best time being a mom one minute, and then the next time questioning.

My life choices.

I'm Lo Mansfield, your host of the Lo and Behold podcast, mama of four Littles, former labor and postpartum RN, CLC, and your new best friend in the messy middle space of all the choices you are making in pregnancy, birth, and motherhood.

If there is one thing I know after years of delivering babies at the bedside and then having, and now raising those four of my own, it is that there is no such thing as a best way to do any of this, and we're leaning into that truth here.

With the mix of real life and what the textbook says, expert Insights and Practical Applications.

Each week we're making our way towards stories that we participate in, stories that we are honest about, and stories that are ours.

This is the lo and behold podcast.

If you are anything like me, you love the conversations around the kind of duality of motherhood.

This idea that, how can this be both the most phenomenal and incredible thing I've ever done, and equally be one of the hardest things I've ever done that is also asking more than I think I'm even capable of or able to give My guest today, Megan Nicks, she is a published author who has actually written this beautiful memoir.

Kind of about this topic.

Megan is a mom of five.

She's the author of Remedies for Sorrow, an Extraordinary Child, a Secret kept from pregnant women, and a mother's pursuit of the truth.

And I think you will find in our conversation today that she is intimately equated with this duality that I'm talking about, but she has figured out how to navigate it in just a really.

Beautiful, lovely, honest way.

Megan and her family have had the extra challenge of bringing along a significant diagnosis for one of their babies into their stories, and so her book, her memoir is all about that.

Our conversation today is as well, and ultimately what I think is gonna happen when you leave this conversation is that you are going to leave with a lot of hope, both about being a mom and about being an advocate for your kiddos and what to do when you know.

Kind of the way we expected it to be, doesn't fully line up with the way that it actually is.

I am so excited to have a friend with me, a fellow mother with me, someone who our kids share and go to the same school and incredible author with me, Megan Nicks.

So I'm gonna let her go ahead and introduce herself a little bit, and then we're just gonna jump into our conversation about a book that she has written that I think you all need to pay attention to and read.

And then honestly just being moms and kind of what that looks like for both of us right now too.

So, Megan, you wanna say hey?

Yeah.

Thank you so much Laura for having me.

I am a mom of five and my book is about our second daughter who was born with an unexpected illness that ended up taking her hearing away.

And she had a lot of delays to start.

And as a writer, I didn't know what to do other than to pour into the research and start writing about my experience of her unexpected differences.

And that led me on this eight year journey of uncovering a silence that has been kept from pregnant women and also just the richness of the life that we don't know we're going to have.

Yeah, I, when I was reading the beginning of your book, and just, it's funny because when Megan writes you guys, she speaks to the mother, Megan, and then she speaks to not the clinical Megan.

Megan is not a healthcare professional.

She is a writer and a mom.

But it, I love the way you dance between both because just in general, I think moms are constantly wearing a ton of hats and dancing through a lot of different roles.

And when you do have a kiddo with high like health needs or whatever that may be, then you have to put on this clinical hat too.

And for most of us, like that's not our job.

And so obviously you can tell through your book that it's this like, I just am a mom.

I just love my baby.

And then it your, it's this conflicted thing with, but also now I have to be your advocate about this.

This virus, this thing that nobody knows about.

So I just love the way that you dance between those two in the book, because I think all of us can associate with the dance of being a mom, whatever that looks like, whether or not we have a high need.

Sick kiddo.

So I think that So lovely.

Yeah.

Thank you.

Yeah.

I do feel like no matter what, what your children are going through, you are their home doctor and you, you see all of the.

Daily clinical things.

Mm-hmm.

To, to put it in those terms that the doctor isn't gonna see.

And so part of what I was wrestling with in the book is that often mothers and pregnant women are, sort of pigeonholed into this like trope of being the hysteric woman.

Mm-hmm.

And it's all your emotional response.

It's not actually a real clinical problem, what your child is going through.

And this was.

Just totally magnified by our daughter's disease, which has been sidelined by the medical community since it was first identified in the fifties.

And so Anna was my second, so I'd already had these feelings about my firstborn that intuition mattered and that it was often dismissed in the medical setting.

And then it was kind of like, whoa, this is a bigger problem in medicine in general, not just like you said.

With kids who have disabilities or medical complexities.

But in general, just being like, I actually, because my heart is in this subject, am researching way more than is reflected in the doctor's perception of me.

And as I wrote my book, which we can talk about a little later, I discovered this field of medicine that is working very hard, quite quietly.

To address that issue of not seeing the whole person.

And that sort of brought all of my thoughts as a mother and a writer, together into this place of hopefulness.

And so the book really is a book of hope, even though it grapples with some personal difficulties, environmental difficulties, which we'll talk about.

'Cause our family lives on a remote Alaskan island and, and.

Well, we live there in the summertime and we received our daughter's diagnosis up there.

So just a lot of problems that, were solved in beautiful ways over the course of time and over the course of like deep reflection on, our daughter and family life and motherhood and, and medicine.

Okay, so I say a lot in birth education.

I got asked this a while ago and I sat on, like I did a speech for a, what's the word?

Like a convention or whatever, online.

And I said that one of the biggest things I think that is like quote unquote plaguing American moms or when we're pregnant, is that we're outsourcing our intuitions to other people.

Be that your favorite educator on Instagram, even our providers who we should love and trust, but we're giving away that power.

I think is like a God-given superpower, right?

Like our intuition is no joke.

We are so often, and this is a beautiful thing, not a scary thing, like the thing that stands between our kiddo and something that's going wrong in their, whether that be their heart, their mind, their body, like mamas pick up on those things.

And so for us to not.

Lean into that and really own that and embrace that.

And I think it is something that you learn as you become a mom.

Definitely have to learn.

If you haven't had like a sick kid or someone who needs you, maybe more than, you know, again, quote unquote, that normal child, like that, that outsourcing of our intuitions is something that is, is really hurting us, and it's something that can be like manipulated by certain fields or whatever if, if we allow that.

So I just, I like that you talked about, yeah, your intuition and the power that you have.

With that and with those, because I really think it begins like the moment that we're pregnant or maybe even before, if we have fertility things going on in our bodies.

So,

okay.

I feel like we're mean no different.

Sorry, go ahead.

Like each child that you have, I think medicine is set up to give expertise to the doctor, and I like that word that you outsource it, that you outsource your intuition, but then that is then reinforced.

Each time that you have a child because you're looking at a different child.

Mm-hmm.

And so you're looking at a newness that can feel like, just a lack of knowledge.

But that intuitive knowledge is always there.

And so I think part of what can, change medicine is, is.

Acknowledging that deep soul connection that mothers have with each baby, even though they might be floundering with breastfeeding or a traumatic birth or a diagnosis.

And I'm grateful that you are such a voice because, I didn't have that kind of experience with, my first was an emergency C-section, so everything was just like.

Wildly different than I expected.

And then my second had a diagnosis.

And then each, each of the three after that, it was like, this is weird.

Every single time you're like, not expecting that.

There's always this beautiful spectrum of surprises.

But if there's one thing that can hold true in all of it, right?

It's your intuition, like that's not changing.

Our kids will change.

What's challenging them will change, our births will change, our breastfeeding experiences will change, but that intuition, that inner voice is not going anywhere.

And so I think that's why it's just so incredibly powerful.

Okay.

I feel like we're being a little bit, vague, like we're withholding information.

Why don't you tell us about Anna, the diagnosis you guys got, and we'll get into that a little bit.

Okay, so I'll tell her, just her initial moments, which we're telling.

And of course, that's just a very unnatural, occurrence, especially if you've had a child before.

And, and I, and again, like intuitively, you just are like.

What's going on?

Like I could tell she was alive.

Her eyes were just like pouring into mine.

She had real dark eyes and dark hair and it was dawn and the shades were pulled and it was just this very sacred moment.

I'd had a doula there because my husband was in Alaska fishing, and we decided I would stay in Denver and have the baby so that I could have a vaginal delivery instead of, an elective c-section up there.

'cause I just didn't.

Wanna go, through the recovery of major surgery where he works seven days a week and is at sea.

And so the midwife held the baby up and I just was like, whoa, she has a need that I can't name.

And she placed her on my chest, and then they called an oncall.

OB.

Who rushed into the room and they brought her to the corner and they rubbed her with towels.

And eventually she did cry.

But as they were rolling me to the recovery room at the hospital where I delivered, they play a song when a baby's born.

And as the song played, I just felt this like bursting open of my heart.

Like she doesn't hear this.

And.

As we got to the recovery room, today, 98% of babies have their hearing tested before they leave the hospital.

That wasn't always the case.

It, it's a, it's a new protocol that actually identifies a lot of diseases that are connected to hearing loss.

And, interestingly, the hearing loss community had a lot of the same fights that my community is having to.

Make, testing more regularized, in newborns.

And little did I know any of this, of course, but she did not pass her hearing tests and they came back the next day and she didn't pass that one and they didn't, the doctors didn't mention, she was also remarkably small.

So she's what's called small for gestational age.

I'm sure some of you listening have babies who are SGA.

She was five pounds.

And so I also saw this and, backtracking slightly on a 36 week ultrasound.

We, found out that she had microcephaly.

So her head was disproportionately small to her body, but at the time the doctor was like, we're just gonna have to wait and see, which hit me wrong and continues to.

Any time somebody says that about a child's development, you never wait and see.

You as a mom always want to give and see and so.

Yeah.

So all these doctors would cycle in and out and take notes.

And so she had these three telltale signs of the disease that she in fact has, but none of the pediatricians mentioned it, none of the hearing screeners tested it.

We went, out of the hospital a week later to an audiologist, and they did a two hour hearing test that she didn't pass yet again.

They never mentioned, a disease that our pediatrician then mentioned at day 10.

We were supposed to fly to Alaska the next day.

My mom, my toddler, and the newborn and I, to go meet my husband for fishing season.

And the pediatrician said, she's small.

She doesn't appear to be hearing, I wanna test her for this little known but common virus called congenital, CMV.

And I was like, okay, like.

She probably doesn't have it.

Like we're all healthy, everything's probably fine.

Even though like buried, buried underneath that was that intuitive worry, this like flag that was kind of waving inside me, like something's still not being identified.

But because of sort of all these professionals who had placated me and said, oh, just come back next week.

She'll probably pass the test next week.

Just go to the audiologist.

She'll pro.

She's just has birth fluid in her ears.

Well he said.

If she has CMV, it's called cytomegalovirus and he didn't reveal a ton right then, which was actually very gentle.

Smart medicine.

But he said, cytomegalovirus has to be treated within the first month of life.

So we're gonna, test her urine for it.

You should fly up to Alaska so you can be with your husband, and we'll call you with the results.

So the nurse strapped on, what she called a potty purse onto Anna.

Anna's our daughter, I don't know if I've said her name yet, onto her little hips, and it's a very noninvasive, painless process.

And she filled the little pouch with urine and it goes off to the lab.

Well, I get home and I Google CMV, of course congenital CMV and congenital means, from birth.

So postnatal, CMV is just.

Basically a virus that actually 50 to 80% of the population has had by the time they're 40.

And most people don't even know you could have CMV right now and not know it.

It can be asymptomatic, it can feel like mono.

It can just feel like the common cold.

But if you catch it when you're pregnant and the baby contracts it, what I learned that weekend prior to her diagnosis is that it can cause deafness, blindness.

Cerebral palsy, epilepsy, autism, stillbirth, and early infant death.

And so, of course, and my husband's gone and I read this and it was just like everything went dark.

It, it was like every possible thing could befall my child and I had never known.

And what I also read was that it's the leading cause of hearing loss in the world.

And the leading cause of birth defects and developmental date delays in the United States and that 90% of women have never heard of it.

I wanna interrupt you for a second.

Yeah.

Because I, most of you guys know LDRP nurse when I worked at the bedside.

So we did labor delivery and postpartum.

So I worked with moms from antepartum, you know, maybe even a mom who's in there because we're worried about baby tracking all the way until they went home.

And so I was.

I, these hearing screeners were in and outta my patients' rooms all the times.

The number of times I told him, mama, don't worry.

We'll retest 'em tomorrow.

Like there is fluid in the ears a lot of times.

Or you delivered really fast, like there were a lot of things.

That we said exactly like you're saying in this process of testing babies.

But we did test all our babies, like you're saying.

I think that is pretty standard.

Would you say in the United States now to test?

Yeah.

Before

you discharge.

Is it required now?

I think, I think, yeah.

It's required and I think 98% of babies are tested.

Even home babies tend to have hearing tests.

Yeah.

So I bring that up just to say that.

I know what CMV is as a acronym.

A word like, I know what that means.

I vaguely could define it for you prior to reading your book and learning more just 'cause the VO two.

But like as a provider and a professional who, obviously it's not my job as a nurse to diagnose or have these conversations anyways.

I never once heard CMV brought up with any of our.

SGA babies who failed both their hearing tests or whatever.

So I guess I'm just confirming, this is funny, but I got on your Instagram account, which Megan doesn't get on her Instagram very often, guys, I'll just let you know right now.

But the most recent reel you had shared about CMV and someone left, in my opinion, a nasty comment that basically said like, oh, crawl out from under your rock.

Like my doctor told me about CMV.

And I thought, okay, well first of all, the data, like you said, tells us that.

Women and families do not know about CMV because there is data to show us that.

And second of all, I'm a care provider who worked with these patients every single day with these babies where you could start to catch some of these things.

And I never heard CMV discussed one time with a baby who potentially could have some signs of it or hey, like, Hey, we should pay attention to this.

So I just wanna kinda affirm.

That this information is not as prolific as I think it needs to be.

And obviously as you feel that it needs to be.

And I feel like, yeah, basically I'm saying like my opinion I think matters in this situation.

'cause I have been that provider who's there with mom, after mom, after mom, after mom.

And these conversations aren't really happening.

So just my 2 cents on that nasty real comment and what's going on out there.

Yeah.

Thank

you Laura.

And it.

It's both validating and disappointing.

'cause I always hear that from nurses, from doctors themselves, from PAs, from neonatologists.

And yet I think that, lack of knowledge is also very motivating to see like, okay, there's still this giant hole in our understanding of prenatal and postnatal health and, and maternal health and, and like.

So, so basically 90% of babies with congenital CMV are never diagnosed, so that data is very true and very compelling because there is treatment for it.

And in these studies that they've done in the United States and Italy, well, so here, here's the big flammable part of the CMV equation is that CMV is contagious in the saliva of one out of three toddlers.

And it always has been.

So, like I'm always saying to moms who I'm telling this to and dads, that like, just actually knowing about it reduces your chances of contracting it by 80%.

And it's, it's been around since, since Animals with Spines started to evolve.

So knowing about it should not make you any more fearful of having a baby than or any higher risk.

Than you ever have been.

Ironically, it makes you lower risk just to hear me say that it, it lives in the saliva and you're enough toddlers.

And so you're thinking, oh my gosh, like what do I do?

What if I've already been sneezed on by my toddler, and I'm pregnant?

It's okay.

Like, you do the best you can once this knowledge has been given to you and the preventive measures are to just try to avoid, saliva getting directly into your mouth.

And you do that by not sharing a toothbrush, not sharing a water bottle.

Don't finish your toddler snacks while you're pregnant.

I know that's hard, but it's very doable.

I think COVID, VID has actually taught us, a lot of these things that we just do now.

It used to be, 'cause I had Anna prior to COVID.

There was that myth, that some of you might remember that like, it was good antibodies if you got sick during pregnancy and now we know like you don't want your baby or your pregnancy to be infected by anything.

So, so there has been this like, learning curve that like we really shouldn't.

Be eating the saliva and snot and, you know, the bodily fluids of toddlers should not come near our mouth when we're pregnant.

And if you can amp that up slightly, and just be aware of it.

And like I did this with my three subsequent children and pregnancies, where I just tell them I'm pregnant and I'm gonna kiss you on the top of the head instead of your lips so that the baby doesn't get sick.

And, and anyways, these studies abroad and in the US have showed that like the vast majority, 95% or something of women want to know about CMV.

They will do what they can to protect their unborn child and their, their maternal bonding is not impacted by this knowledge.

And what I found out in my research, is that obstetricians are intentionally keeping this quiet because they think that it will be impractical and burdensome information for parents to know.

And you know, of course those of us in the community who are taking our kids to daily therapies and planning for surgeries and, you know, all these other things where like.

Are you kidding?

Impractical and burdensome to know the information that might have protected our children from life-threatening disabilities.

That is pure paternalism in the sense that it makes the choice for us instead of like, you're a huge proponent of here is this information that is true, like it's an incontrovertible fact.

This disease lives in toddlers and it can disable infants.

We need that information and then do with it what you will if, if you feel like that's too much to manage and you're not likely to contract CMV, then don't, don't do the preventive measures.

If you feel like that's important to you, then you have the knowledge, which is a form of respect and ethically sound.

I mean, ethically, the American Medical Association bans the.

Withholding of critical information from patients.

So like really this is a big, big problem in medicine, that this information is intentionally withheld.

However, it is your choice to do with it.

What you will.

You can plug your ears.

I don't wanna hear about that.

Whatever.

And into the doctor's like credit, they are trying to protect women from worrying more.

And we do know that that is part of pregnancy.

But to put it in perspective, toxoplasmosis, which.

Studies have shown the majority of women know lives in kitty litter affects one in 10,000 babies.

CMV affects one in 200.

So we need to be worrying about this.

We need to know about it.

We need to be given the tools to prevent it or to say, at birth, I want my baby to be tested for this.

And if, if you, there's, there's so many questions.

Like when I started learning about CMV, I had been a writer prior to that.

I had my graduate degree in writing and was like, wow, I need to write an essay about CMV.

And then I was like, holy cow, this deserves a book.

This is, there are so many questions to be answered.

There are so many medical cultural things that need to be unearthed.

And so as I'm talking, if you have a lot of questions, the book, which is called Remedies for Sorrow.

We'll address all these intricacies of testing and pregnancy and what do I say to my ob?

And, and, and it really takes a deep dive into the culture of pregnancy and, and why this has been withheld from us, because it is alarming that we don't know about this.

So anyways, yeah, I can talk forever about the virology of CMV, but it is.

Objectively prevalent, preventable, and serious.

Okay,

so I wanna focus or I wanna circle back on what you said too about how the awareness of this virus actually decreases your risks of this virus, because, like you said, I talk about it all the time.

I do not care what you do with the information that I share with you or that's out there, but you deserve to have that information.

And I just wanna affirm that we are sharing something right now that could potentially feel really scary if you're pregnant and you have a toddler or two toddlers at home, right?

Because you're thinking, what, I'm at this big risk, right?

The numbers are shocking, I think a little bit to hear how common this is, especially when we hear so much about other things that are not common at all.

Like the kitty litter thing, right?

But I wanna affirm that you even just listening to this podcast right now and going, oh, maybe I'll stop eating my toddler's food, the rest of my pregnancy.

Like that, those little things have just dramatically decreased your risk, just the awareness of it.

So instead of turning this into like, this is something we need to worry about, I think it's something like, I'm so glad I know about this.

Now I can be proactive towards it.

And then there is this degree of, in all of motherhood, which we could probably talk about that for an hour of like kind of letting go and letting God, right?

Like we cannot control everything, but we deserve to have information like this so we can do the best we can with the information that we have.

And so I just wanna affirm that for you guys listening.

I would not want you to choose to now worry about this.

And I don't think Megan wants that for you as well, but she wants you to know about it so you can choose what to do with it.

Like that's the point here.

You should get to choose what to do with his information.

Yeah, absolutely.

And, and really the, the majority of the book is about this, this drastic deep change that came into my life and our family's life.

'cause of our daughter's differences.

So it is sort of this paradox, and I talk about this with other CMV moms of like, it feels really weird to advocate, preventing CMV because I love that our daughter is deaf.

Like I would, I would not know my daughter if she weren't deaf.

Like, that is her.

She wakes up and we sign to her and, so.

Fast forward, we're sort of like leaving the narrative behind, which I tend to do 'cause I get all like medical quickly when I talk about CMV.

But so we, should I start back, should I loop back to the story of getting to Alaska for second?

So we get to Alaska and sure enough, I get the phone call that Anna tested positive for CMV.

And because I didn't have a child with disabilities and I didn't have any experience really of the atypical, you know, I was just a healthy kid, had a healthy firstborn.

It was just this world of, complete uncertainty.

I was scared and I grieved for a while.

But Luke, my husband, who is very much around outside of fishing season, so we're in Alaska from May to September and the rest of the time, and it's a very difficult season.

We're on a foggy island.

Sitka is the name of the town and it's just a season of hardship for me and.

The beauty of it is that when we get home, he's very, very involved with the children and with home life.

And so it's just a seasonal hurdle, that presents annually for me.

And, but he's very in tune with our children.

And, we were on a drive and which is a short drive 'cause there's only 14 miles of drivable road on our island.

But we just drive from one end of the island to the other.

And I had said, I need to talk to you.

Like, can we just get in the car and drive?

And I listed out all these things that Anna might never do, and he said, no matter what, Meg, we are going to love her just the same.

And it was so, it was like, it was just deeply moving.

Like I had not.

Somehow I had left love out of it, kind of like I was obsessed with her and I loved her and, and she had kept me, just riveted in that love from the minute she was born.

But somehow the medical possibility had overtaken that with fear.

And thanks to Luke and thanks to our older daughter who was two and a half at the time, and her just like, totally unconditional acceptance of Anna.

Like when we did find out.

So I flew to Seattle, after Anna was a month old, and found out she was profoundly deaf, like zero hearing.

And I came back and I told our older daughter, Zalie is her name.

I thought she was gonna be sad and she was like.

Okay.

Like, does that mean she doesn't hear?

Can she hear this?

Can she, and she's, you know, dancing stuff in front of her face.

And it was just this beautiful lesson and acceptance.

And then as time went along and I met other CMV families, I saw that it wasn't just acceptance, it was like a different way of living that left complacency behind.

And, and I'm not saying like families with children of, with medical complexities, don't have challenges like.

The first family that we met, their son had died from CMV.

But you could tell that her love for him was of this different vigilance and fierceness that I had never really seen.

And so anyways, I think like the prevention is important because CMV can be fatal.

But the idea is not to prevent children like ours, like they are absolutely this, this gift that, I think too, through a lot of prayer I saw as, just a revelation of the life that we didn't expect but needed, to sort of check some of these complaints and.

Nuisances for what they really were and to say like, this child needs things that, are going to require sacrifice.

But I think it's been a little bit lost culturally that sacrifice brings meaning and that that's what motherhood is, is like this giving of self, that is not limited to children who are healthy and typical.

It's actually like.

We are called to be the best version of ourselves in hardships like this.

So anyways, I think, I hope less babies are born with CMV.

But I also, that does not lessen the way that these children who exist are like changing the world for the better.

Right?

Okay.

I have two questions as follow up.

One clinical and then one the other direction really quickly.

For those who are pregnant right now, I'm saying, whoa, is someone testing me or is this something that's part of a prenatal test or whatever.

Are we, I'm saying like the United States, are we doing anything right now?

Do we screen for that?

Is it part of the.

That 24 hour screen, we call it the PKU, that looks for a bunch of stuff, like mm-hmm.

Is there a way that we are kind of checking in and there's a touch point for families in prenatal care, aside from, yeah, we should be having these conversations.

We're working on that, but is there anything clinical or diagnostic going on for families right now without asking, or the assumption, Hey, there's something going on here and then getting tested.

Right.

No, there's not.

And actually I don't recommend that women are routinely screened for CMV because, the infrastructure can't really handle that.

And, well, there's three reasons.

Doctors are not as educated about CMV as they need to be.

Studies have shown that from medical school forward, there's a significant gap in their understanding of the transmissions and the treatment.

Of CMV.

And so often when a woman does request a test in the United States where it is not part of routine screening right now, the doctor will test her and say, you had antibodies to CMV, so you're good.

This is not true.

You are somewhat protected if you've had CMV before, because if you've had CMV before, your long-term antibodies will show up on a blood test to it.

But it can still pass over, into the fetus though at a much lower rate than if it's your first time contraction.

So basically, if it's not your first time getting CMV, there's a 1% chance that it will cross the placenta.

If you have never had CMV and you get tested during pregnancy, if they test your titers, they're called.

There's a 33% chance that it will cross the placenta and reach the fetus.

So it is very useful information to have your CMV titers checked during pregnancy.

But, there's thousands of strains of CMV.

So all pregnant women are at risk because even if your body has encountered CMV, a different strain might have come along across the placenta, and abroad.

In countries like Brazil and India where women are living in close proximity to each other and always around children, a lot of those moms already have CMV antibodies when they get pregnant, but they're having just as many babies with congenital CMV who are symptomatic, in terms of the worldwide numbers.

So it's definitely still an issue no matter if you get that test or not.

So really like the preventive measures are very important no matter who you are, no matter what the antibody test says.

So there can be a lot of like false comfort in testing during pregnancy and a lot of errors on the physician's part, which I've seen personally, where people are like, I'm good.

And it's like, no, you're not, nobody's ever good.

There's not a vaccine that's kind of a can of worms.

Moderna's been working on one, but, we won't go there.

There isn't one.

No, we're not going there.

Good.

I don't wanna go there.

And then, the, yeah, so, so you can request that test, but I would take it with a grain of salt.

The, the real thing to do would be if you see abnormalities on an ultrasound like microcephaly enlarged liver or spleen, hydro drops.

Asymmetrical ventricles in the brain, these kinds of things.

Then you should get tested for CMV during pregnancy.

There is some evidence coming out just recently that antivirals with a confirmed case of CMV in the fetus, which you have to confirm with amniocentesis, that antivirals can therapeutically, help the fetus's outcome.

If the baby comes out, with any symptoms, so failed hearing tests, small head size, SGA, seizures, jaundice, you just have a, a sense that something is different.

Totally ask for the test, totally ask for it at birth.

This is all in the book, but, just as of this year, there's three states that are testing all their babies for CMV.

Connecticut is starting in July.

New York is running a pilot program.

They got funding to test every baby born in the state of New York this year.

So that we can You mean post, you're talking

post birth, right?

Like they're born and then, okay.

And Minnesota.

And the reason this is possible now, and it wasn't before, is that the newborn dried blood spot.

As opposed to urine, which Anna had, tested, you can actually use the blood spot.

It's more sensitive than doctors previously believed.

And it's a test that's already in place.

We all get that heel prick for our babies.

And now, you can add CMV to that very easily and very inexpensively to make sure, because one thing I didn't say earlier is that CMV, all these losses can be progressive.

Most babies with CMV are actually born asymptomatic.

And so if you had like a mono like illness during pregnancy, if you saw any abnormalities on ultrasound, if you have a newborn that has some unexplained, delays, feeding issues, visible things, you should just ask for the test because, one out of four babies born with CMV will go on to lose their hearing.

And if we don't know, if we aren't testing them, then we're not getting these regular audiology checkups.

And that sets everything back.

It sets back their language development, their relationship with parents and siblings.

So really the testing of newborns is where the CMV community is putting a lot of emphasis.

Because pregnancy is very difficult for the testing.

But the newborn period is when they can also get this antiviral in the first month of life.

And it basically prevents brain damage.

So really, like I early identification, leads to treatment and, and, and this is all, this all needs to be proceeded by a much bigger awareness of the problem during pregnancy.

Thank you.

That was a long answer.

No, that's helpful.

'cause I mean, again, there's a lot of people listening who are pregnant and so I don't want this to just feel like I'm terrified and there's nothing to do about it.

Oh

yeah, yeah.

Helpful.

And, yeah, and, and like we were talking about earlier, like.

This isn't something to be worried about just because you know about it now, like it's still one in 200 babies, so it's still not like likely that your child is going to have CMV, but it is a leading risk and, there's no zero risk pregnancy.

Like that's part of the problem with the pregnancy culture is that we could like.

Do all the right things and have this perfect child.

Well, guess what?

Like the perfect child is the child that God gives you.

Like no matter what you've done, no matter what you expected.

Like that's not, what we're trying to do here.

It's just a medical, it's thing that can be helped.

But it's not perfect and nothing that we do.

Is right.

Like nothing we do as mothers is perfect.

Our children are, just a gift to us no matter what.

So,

yeah, absolutely.

Okay.

So that kind of brings me to the second thing that I wanted to bring up.

Your book is gorgeous.

I was telling her before I started and then I'm, I need to say this live so you guys hear it too.

Megan does a really beautiful job of talking about like being a mother and loving this baby.

And then also just this like clinical component as well of like, and now I'm gonna be nurse Megan or Dr.

Megan and just dancing this, dance that moms dance.

Between all the hats that we put on and stuff like we've been talking about, you know, the intuitions and balancing all this stuff.

And I equally love the book because my father, in case you don't know, is a commercial fisherman and spent.

Up in Alaska as well, not in Sitka.

More out of Anchorage, some other places for any Alaskan locals who are listening.

But I know as a mom, I, I'm sorry, not as a mom, as a kid, I know that dance of like having a dad who's gone living a seasonal life, like having a father, like your girls, who I'm assuming Luke is the same, is obsessed with the water.

Like I have never seen a soul more at rest than my father's on the water.

And I know that sounds dramatic.

Yeah.

But you know that song, it is Well, with my soul, I swear that's like my dad on his, on the water.

And so I just.

I don't know.

Have you read The Great Alone By Chance, by Kristen Hannah?

Well,

don't say you hate it, IED it and I was like, this is too much my life.

Yes.

Okay.

I've heard it's, I think it's probably her best book, right?

In my opinion.

It is one of her very, I mean, she has a couple that are up there for me, but it's essentially someone, maybe, maybe a little more isolated than you guys when you're up there.

But it is, when I read that book, I just thought like, this is.

This is actually really real what it's like up there and I know the tiniest taste of this.

And so I think if you liked that book, which is fiction, you don't have to like that book to read Meghan's book.

But it is really cool because I think the Alaskan piece of your story, I'm gonna call like a semi absent father.

Like there's just a lot of, and Luke's amazing, so don't take that the wrong way.

But he's absent when he is not with you.

And then he is there like my father was, I just think it's such a cool memoir too, about motherhood and juggling the life we thought we'd have with the life that we do have.

You have this passage early in the book about like the neutral mom with her hand on her belly kissing her toddler, like we're sold these images about what this is all gonna look like.

Let's.

Like even just remove a diagnosis from the conversation for a second.

Like motherhood is not what the images that we are sold.

And I don't mean that in a negative way.

I mean that in a way of like, Hey, we need to be out here talking about what is it like Megan to raise five children?

What is it like to have a partner who is gone months of the year?

Weeks of the year?

Like just having more conversations about how tough that can be, how creative you have to be.

I just think I love those parts of your book as well of being a mom.

Like obviously the book is about CMB and Anna, and all of that's intertwined, but I don't know even if you have something to speak to in regards to that, of that balance of the life you have, how it might be harder than you expected, like.

Anything, any thoughts there?

As I just blabber on about that part?

I, I was thinking like just the process of writing through my life in Alaska brought a lot more beauty into my life and my perception of that, challenge, for me, because I'm a writer, but also probably more so because I'm a reader.

I've just found that motherhood has been so, there's just such a balm in other people's stories of motherhood.

And, and even like telling myself the story of our lives in Alaska made our lives in Alaska more palatable and beautiful and, and it slowed it down.

I could see things for what they were not just the immediate, like, I wish I were home where it's sunny and I wish this were the case and that were the, you know, like I, I think it can be an easy trap in motherhood to be like, if only this were different.

But we all have those only thises.

And, so I love, I love motherhood, memoirs, and, and yeah, I think I, I just wanted to tell the story of Luke and my marriage as something that isn't easy, but yeah, like this, this component of his, it is, well, with my soul kind of person that doesn't.

Necessarily suit my personality, which like, to be honest, if I could like live at the neighborhood pool, I'd be fine.

Not going back to Alaska.

Like I just, I, I mean, I, that's an exaggeration.

I love our friends there.

It's absolutely gorgeous.

But he chose it.

I didn't.

But I think seeing the whole story and writing the whole story, has allowed me in a different way.

To, to be there for Luke to keep going.

People are always like, are you still going up there?

I'm like, yeah.

Like, we have to go.

It's his thing.

Like, I mean, and he, he fishes less than he used to, but it's integral to his being, the same way motherhood is to mine.

And I think in the end we're, I'm very fortunate to have somebody who has that kind of calling.

Even if it doesn't really make family life easier, I do think it's given our kids some real, gifts in terms of like the slowness of life on an island, the lack of entitlement that that requires.

Like sometimes the grocery store is out of lettuce and milk and you're like, Hey, no cereal, like, no salads.

I mean, they don't care about salads.

But, you know, that kind of stuff.

But, I. Yeah, I think, I think sometimes the pace of our lives doesn't allow us to stop and, think about, to reflect on the challenges that we've been given and reframe them, and offer them up.

And for me, literature does that, silence does that too.

Prayer does that too, but there is something, and, and just to go back very briefly to what I was talking about earlier with medicine is this field that I had brought up is called narrative medicine.

And it is, it's a type of approach to patients, which starts with, tell me your whole story from the beginning and when people find doctors who practice this type of slowed down.

Narrative based medicine where people are allowed to tell their whole story.

There's actually physical healing in it.

Patients are much more likely to follow through with treatments and regimens and they trust their doctors and their diseases are actually alleviated at higher rates, than when we're just treating the complaint.

And I think that's true with.

Any kind of field and, and within motherhood too is that like if we see our kids as a story, if we see our motherhood as a story, it's gonna take on different details that we notice, than if we just see it as like another day to solve problems.

And so that's just been an unexpected part of being a mother and a writer.

That has kept me going through grief and loss after having Anna.

Just the challenges that that kids put into our lives.

And, and I think if we see life as this like trajectory of, beauty and challenge, but ultimately hope, life just feels very different and, and reading books helps me to remember that so.

Megan, that's so lovely.

Gosh.

The narrative medicine, when you brought it up, I thought, I felt like I could cry just thinking about a doctor looking at me and saying that, and I'm like, oh, I would just weep in front of them while I told my story.

I can't imagine.

Yes.

And that's what, there's a doc, the doctor who started it, her name's Dr.

Rita, Sharon and, she had, she was a practicing doctor at Columbia and she read a book, the Wings of the Dove.

Where a doctor paid deep attention to his patient and she turned right back around and got her PhD in literature at Columbia and she created this field.

And so medical students are now reading books like poetry and novels and plays and memoirs in order to deeply connect to their patients.

And, Dr. Sharon said this, Dominican man came in with, complaint of back pain.

And she said that to him, she said, tell me your whole story and tell it from the beginning.

And he just started weeping.

And and the beauty of it is then the doctors are encouraged to chart in their own words and their own language, be it poetry or prose.

And so they have a very different story that they're telling of that patient that doesn't begin with the pain, but.

It, it begins with their personal story and their courage and their loss.

And so it really is this beautiful, newish approach to the doctor patient relationship.

And I think CMV provides this great opportunity to hear a story that people haven't heard and to not push back on that.

As, as the medical world is want to do because it indicates some lack of competency, but to embrace it and say, we need this narrative and we need all human narratives in order to deeply connect to each other.

It's so pretty.

Stories matter.

Right?

Exactly.

And the story matters.

Your story matters.

Your book is an excellent story.

So, okay.

I am so.

Just grateful to you for having this conversation 'cause I'm sure it's tender and vulnerable, necessary.

Just a lot in there and I think it's valuable and it's needed, so I am so grateful.

Will you tell everyone where they could find you or maybe even email you or connect with you if they have questions or, or want more from you about CMV or, or being an Alaskan wife?

Sure.

Yeah.

And thank you Laura.

I'm so grateful for your work in the space and.

For just letting me tell my story.

Yeah, so the book is Remedies for Sorrow.

It's published by Doubleday and you can find it on Amazon, the Penguin Random House website.

My website is Megan Nix, M-E-G-A-N-N-I x.com, and I'm on Instagram at Remedies for Sorrow.

And there's a, submission form on my website if you wanna contact me.

Perfect, and I will include links to that book in the show notes, your website, all of that as well.

And I wanna link the book you just mentioned about narrative medicine too.

So I'll throw that in there if anyone's curious, because I feel like I need to have a podcast about that as well.

Oh yeah.

Okay.

This last quick question, it can be anything that pops into your head, just go with whatever it is.

What is something right now that's like sparking joy in your life?

Big, small.

Oh my gosh.

I know the answer.

Okay.

I'm reading a book called, this Is Happiness, by Neil Williams.

It is like absolute delight, like the language.

Every page is delightful.

It is just an incredible book.

I'm waking up like earlier than I should to read for an hour, just because my 2-year-old is in this amazing sleeping late phase that I never have enjoyed for the last like 12 years.

So I'm up, I'm reading it.

I highly recommend it to everybody.

It's excellent.

Okay, perfect.

I will link that one too.

Okay.

Okay.

Thanks

Megan.

Thank you so much, Laura.

Thank you so much for listening to the Lo and Behold podcast.

I hope there was something for you in today's episode that made you think, made you laugh or made you feel seen.

For show notes and links to the resources, freebies, or discount codes mentioned in this episode, please head over to lo and behold podcast.com.

If you aren't following along yet, make sure to tap, subscribe, or follow in your podcast app so we can keep hanging out together.

And if you haven't heard it yet today, you're doing a really good job.

A little reminder for you before you go, opinions shared by guests of this show are their own, and do not always reflect those of myself and the Labor Mama platform.

Additionally, the information you hear on this podcast or that you receive via any linked resources should not be considered medical advice.

Please see our full disclaimer at the link in your show notes.