Latest / Wellness, Actually with Emily Oster & Perry Wilson, MD / One Mother's Story of CMV in Pregnancy with Megan Nix

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One Mother's Story of CMV in Pregnancy with Megan Nix · Wellness, Actually with Emily Oster & Perry Wilson, MD

• 0:00
  Speaker 1: So welcome to parent Data.
• 0:02
  Speaker 2: I am absolutely thrilled to invite Megan Nixt to join
• 0:05
  Speaker 2: me today. Meghan is an author. Her book Remedies for
• 0:10
  Speaker 2: Sorrow is out I believe tomorrow based on when you're
• 0:14
  Speaker 2: hearing this podcast, and I'm just really thrilled to get
• 0:18
  Speaker 2: a chance to talk to her about it. So Meghan, welcome,
• 0:20
  Speaker 2: Thank you for joining me.
• 0:22
  Speaker 3: Thank you, thanks for having me Emily.
• 0:24
  Speaker 2: I would love to start by just asking you to
• 0:27
  Speaker 2: introduce yourself and introduce the book in whatever way feels
• 0:32
  Speaker 2: right to you.
• 0:33
  Speaker 3: Great. So I'm a mother.
• 0:35
  Speaker 4: I'm actually a mother of five, just recently had my fifth,
• 0:39
  Speaker 4: and when I was pregnant with my second, I had
• 0:43
  Speaker 4: a feeling something was different about that pregnancy. I had
• 0:46
  Speaker 4: a toddler at home, and unbeknownst to me, I had
• 0:51
  Speaker 4: contracted a virus from my toddler called cytomegalovirus or CMV.
• 0:56
  Speaker 4: But it wasn't until my second daughter, Anna was born
• 0:59
  Speaker 4: that we realized what CMV even is, and she was
• 1:03
  Speaker 4: born profoundly deaf and moderately delayed from CMV, and that
• 1:08
  Speaker 4: began my journey investigating the disease, writing a book about it,
• 1:13
  Speaker 4: and just paying extra close attention to the way parenthood
• 1:18
  Speaker 4: had been presented to me and was being presented to
• 1:21
  Speaker 4: me through social media, through my relationships, through the health system,
• 1:27
  Speaker 4: and just coming to terms with a truth that didn't
• 1:31
  Speaker 4: seem to be aired to me as a mother until
• 1:34
  Speaker 4: I became one, and continues to be that way every
• 1:37
  Speaker 4: time I have a child. It's like, oh, this is
• 1:39
  Speaker 4: a new thing that I never knew existed and that
• 1:42
  Speaker 4: was never spoken about. But CMV seems particularly silenced in history,
• 1:47
  Speaker 4: in medicine and socially. So that's the basis of my
• 1:51
  Speaker 4: book was, you know, exposing that truth.
• 1:55
  Speaker 2: It is a very profound book and very both very readable.
• 2:00
  Speaker 2: I mean, you're an excellent writer, but also I think
• 2:03
  Speaker 2: the sort of feeling, particularly at the start of the
• 2:06
  Speaker 2: book when you sort of talk about the journey of
• 2:07
  Speaker 2: trying to figure out what was wrong and the feeling
• 2:11
  Speaker 2: of sort of knowing that something's wrong, but also just.
• 2:15
  Speaker 1: The kind of search for that.
• 2:17
  Speaker 2: For me, it felt very resonant with a lot of
• 2:21
  Speaker 2: the way early parenting can feel and sort of the
• 2:23
  Speaker 2: way that our instincts can feel like we are explaining
• 2:27
  Speaker 2: like no, you don't understand, there's something going on here,
• 2:29
  Speaker 2: and I need to understand it better, and we need
• 2:32
  Speaker 2: to get to the bottom of it, and sort of
• 2:33
  Speaker 2: being confronted with sometimes a system that is not really
• 2:37
  Speaker 2: helping us get to the bottom of those things.
• 2:40
  Speaker 4: And I think pregnancy in general is medicalized and something
• 2:44
  Speaker 4: to be fixed, and you sort of feel like you
• 2:47
  Speaker 4: just move through these appointments without being really spoken to
• 2:53
  Speaker 4: or understood, Especially with my first and then with my
• 2:56
  Speaker 4: second because of CMV, I kept thinking something is going on,
• 3:00
  Speaker 4: Like I just intuitively knew that something was different, that something.
• 3:04
  Speaker 4: She was too small. I could tell when I looked
• 3:07
  Speaker 4: in the mirror, I was too small. And then when
• 3:09
  Speaker 4: she was born she was five pounds, went home with
• 3:12
  Speaker 4: a four pound baby and nothing, nobody said anything to me,
• 3:16
  Speaker 4: and I was like, am I going crazy? I just
• 3:18
  Speaker 4: feel like there's this giant elephant in the room. And
• 3:21
  Speaker 4: it turns out the elephant is in the room of
• 3:23
  Speaker 4: every pregnancy with CMB because it's not disclosed to pregnant women.
• 3:29
  Speaker 4: But in general, I feel like, right now, so Anna,
• 3:32
  Speaker 4: my child with CMV, she's almost eight. I think now
• 3:36
  Speaker 4: thinks in large part to year books, but many others,
• 3:40
  Speaker 4: pregnancy is being portrayed more realistically. The needle is moving slowly,
• 3:46
  Speaker 4: but I see it moving, you know, in literature for sure.
• 3:49
  Speaker 4: But I did have that experience of not feeling seen
• 3:52
  Speaker 4: or heard, and then it turned out almost validating to
• 3:56
  Speaker 4: see that, oh, this entire disease hasn't been seen or
• 3:58
  Speaker 4: heard either, not just me feeling like a crazy person.
• 4:03
  Speaker 2: Yeah, so I want to I want to dive into
• 4:05
  Speaker 2: this because I I you actually mentioned Expecting Better in
• 4:09
  Speaker 2: your book, which thank you for reading it, But you
• 4:12
  Speaker 2: note that I do not talk about CMB in the book,
• 4:16
  Speaker 2: which is something we are also going to remedy.
• 4:18
  Speaker 1: But it is, you know, in a sense like I
• 4:21
  Speaker 1: think of myself.
• 4:21
  Speaker 2: As trying to write books that surface a lot of
• 4:24
  Speaker 2: information that people you know otherwise might not get and
• 4:27
  Speaker 2: keep them as informed as possible.
• 4:28
  Speaker 1: And this is something I did not know about.
• 4:30
  Speaker 2: So you are the expert on this here, certainly on
• 4:33
  Speaker 2: this call, and I think in some very broad senses
• 4:35
  Speaker 2: as well. Give us the sort of overview of CMB. Yes,
• 4:40
  Speaker 2: it's a virus. What is the implication for pregnancy? How
• 4:44
  Speaker 2: do we think about it in this space?
• 4:46
  Speaker 3: Sure?
• 4:47
  Speaker 4: So, CMV is a ubiquitous virus that is generally harmless
• 4:51
  Speaker 4: to the healthy population, Toddlers can have CMV and you'd
• 4:56
  Speaker 4: never know it.
• 4:57
  Speaker 3: Adults can have it.
• 4:58
  Speaker 4: It's dangerous if you're immuno so pressed, but it's very
• 5:01
  Speaker 4: dangerous if you are pregnant and CMV transmits through the
• 5:06
  Speaker 4: saliva and you're in of toddlers, and generally it is
• 5:10
  Speaker 4: present and contagious in the saliva of one out of
• 5:13
  Speaker 4: three toddlers. When you contract it when pregnant, if it's
• 5:17
  Speaker 4: the first time that you've contracted it, you have about
• 5:21
  Speaker 4: a thirty three percent chance of it crossing the placenta
• 5:25
  Speaker 4: and reaching the fetus, and if that happens, it can
• 5:28
  Speaker 4: cause a huge range of symptoms in the baby. Blindness, deafness,
• 5:34
  Speaker 4: cerebral palsy, epilepsy, autism, early infant death, still birth are
• 5:40
  Speaker 4: some of them. It's the leading cause of birth defects
• 5:44
  Speaker 4: in the United States and likely the world, though we
• 5:46
  Speaker 4: don't have great data on the global population. If it's
• 5:50
  Speaker 4: not your first time contracting it, which is called a reinfection,
• 5:54
  Speaker 4: it's a lot less likely to cross the placenta but
• 5:57
  Speaker 4: can still result in disability, and worldwide, reinfections are causing
• 6:04
  Speaker 4: just as many symptomatic babies with congenital CMVs as like
• 6:09
  Speaker 4: primary cases are in the US, I believe if I'm
• 6:13
  Speaker 4: stating that right, basically think.
• 6:16
  Speaker 2: To like to sort of flesh that piece out for people,
• 6:19
  Speaker 2: just to be sort of think about the numertor denominator piece.
• 6:21
  Speaker 2: Most people coming into pregnancy have had CMB at some
• 6:25
  Speaker 2: point before, so if they are affected again, it will
• 6:28
  Speaker 2: be a reinfection, and then that can have some consequences
• 6:32
  Speaker 2: less severe, but because that's a much larger number of people,
• 6:35
  Speaker 2: actually most of the birth effects associated with CMB are
• 6:40
  Speaker 2: a result of reinfections. Just as the denominator of susceptible
• 6:45
  Speaker 2: people there is bigger.
• 6:46
  Speaker 3: Exactly, yes, what you said.
• 6:49
  Speaker 4: So in a reinfection it'll cross the pluscent about one
• 6:52
  Speaker 4: percent of the time. And so a big problem with
• 6:55
  Speaker 4: CMV is that it does tend to be invisible at
• 6:58
  Speaker 4: birth when the symptomatic babies you might have, like my
• 7:02
  Speaker 4: daughter was symptomatic at birth. She was small for gestational
• 7:05
  Speaker 4: age because she was forty weeks but five pounds, and
• 7:08
  Speaker 4: she failed her hearing tests. So those are visible quote
• 7:13
  Speaker 4: unquote symptoms. I mean, the deafness is not visible. But
• 7:16
  Speaker 4: because we have this great system today for testing newborns
• 7:20
  Speaker 4: hearing to flag them for hearing loss or other diseases.
• 7:24
  Speaker 4: That is really like the big signifier that CMV might
• 7:28
  Speaker 4: be present. However, most hospitals are not testing babies for
• 7:33
  Speaker 4: CMV even if they do fail their hearing tests, and
• 7:37
  Speaker 4: even though CMV is the leading cause of non genetic
• 7:40
  Speaker 4: deafness in the world. So a lot of the advocacy
• 7:42
  Speaker 4: work around CMV is using this red flag of the
• 7:47
  Speaker 4: failed hearing loss tests to say this baby might have
• 7:50
  Speaker 4: other things going on besides the hearing tests. So basically
• 7:55
  Speaker 4: the virus, you want to try to avoid it when
• 8:00
  Speaker 4: pregnant because of the damage that it can cause. One
• 8:04
  Speaker 4: out of five babies will have CMB, who will have
• 8:08
  Speaker 4: symptomatic CMB who are born with it. Four out of
• 8:11
  Speaker 4: five will likely not have lifelong impairments from CMB. But again,
• 8:16
  Speaker 4: the data is pretty shaky on that. And I was
• 8:19
  Speaker 4: at a conference in Alabama where there's a lot of
• 8:22
  Speaker 4: research coming out about CMB, and one of the doctors said,
• 8:25
  Speaker 4: we've never really seen a true lifelong asymptomatic case. Even
• 8:29
  Speaker 4: the kids who are deemed asymptomatic are having behavioral issues,
• 8:34
  Speaker 4: sleep issues, eating issues, and so you know, in my head,
• 8:38
  Speaker 4: we really don't have enough cumulative data to say that
• 8:42
  Speaker 4: in four out of five cases, CMB leaves a child unharmed.
• 8:46
  Speaker 4: So sometimes doctors will say, yeah, but the vast majority
• 8:50
  Speaker 4: of kids with CMB are okay, twenty percent is a
• 8:53
  Speaker 4: large number of kids to still have basically disabilities from CMB,
• 8:59
  Speaker 4: and eight percent to have other things going on that
• 9:02
  Speaker 4: we haven't even connected back to the disease.
• 9:05
  Speaker 1: Yeah, And so just I mean, I.
• 9:06
  Speaker 2: Think it's really worth like underscoring that, you know, we're
• 9:10
  Speaker 2: talking about something that is the leading cause of birth
• 9:13
  Speaker 2: defects in the US, and yet it is a topic
• 9:18
  Speaker 2: that I think many women and even to some extent
• 9:23
  Speaker 2: their doctors are not talking about or thinking about during pregnancy.
• 9:28
  Speaker 2: So we have pregnant women who are often encountering toddlers,
• 9:32
  Speaker 2: and toddlers often have this virus and that is a risk,
• 9:39
  Speaker 2: and but yet again we're not It's something we're not
• 9:41
  Speaker 2: talking about. And so I know a lot of you,
• 9:43
  Speaker 2: a lot of your work has after animal is born,
• 9:45
  Speaker 2: has been in this space of trying to think about advocacy,
• 9:48
  Speaker 2: thinking about informing people about this. I after having read
• 9:53
  Speaker 2: your brook, talked to a bunch of doctors about sort
• 9:55
  Speaker 2: of this question of CMB, and you know, why are
• 9:57
  Speaker 2: we not talking about this? And the thing that they
• 10:00
  Speaker 2: say back is there's really nothing to do. We don't
• 10:05
  Speaker 2: have a vaccine because this is large often in adults
• 10:09
  Speaker 2: would be just asymptomatic or just feel like like a
• 10:11
  Speaker 2: cold typically, and because.
• 10:13
  Speaker 1: It's everywhere, if I test people for this.
• 10:17
  Speaker 2: It's just going to scare them, it's just going to
• 10:19
  Speaker 2: make them anxious.
• 10:20
  Speaker 1: And there's really nothing that we can do. We can't
• 10:22
  Speaker 1: offer people anything.
• 10:24
  Speaker 2: And so I'm sort of curious from the other side
• 10:26
  Speaker 2: of this, like what you think about that that claim?
• 10:30
  Speaker 4: That argument, Well, I think it is fairly paternalistic to
• 10:34
  Speaker 4: say that, to say that women don't deserve an education
• 10:38
  Speaker 4: in something that could be prevented just because doctors don't
• 10:42
  Speaker 4: have the power to fix it. That's not how we
• 10:45
  Speaker 4: raise humans grow. Humans are humans. We want to know
• 10:48
  Speaker 4: and studies have shown that ninety plus percent of women
• 10:52
  Speaker 4: want to know about CMV, want to know what they
• 10:55
  Speaker 4: can do to reduce their risk. So to me, you know,
• 10:59
  Speaker 4: it just falls in to that truth that we all
• 11:01
  Speaker 4: are coming to know about the medical field, which is
• 11:04
  Speaker 4: that it is often governed by money, and doctors don't
• 11:09
  Speaker 4: make money on conversations as much as the medical system
• 11:13
  Speaker 4: does on interventions and vaccines and being able to do
• 11:19
  Speaker 4: something that will in a more quantifiable way heal people.
• 11:26
  Speaker 4: So really the knowledge of CMV prevention is what we
• 11:32
  Speaker 4: need right now, which is that if we can do
• 11:35
  Speaker 4: better to avoid our children's saliva by not kissing them
• 11:39
  Speaker 4: on the mouth, keeping toothbrushes to ourselves, not finishing their snacks,
• 11:44
  Speaker 4: these are very doable things, and in the studies, women
• 11:47
  Speaker 4: have said they have no problem doing these things. They
• 11:50
  Speaker 4: are happy if it's happy to do this. If it's
• 11:54
  Speaker 4: going to prevent stillbirth, that is not something that doctors
• 11:58
  Speaker 4: should be saying there's nothing to do about this. There
• 12:01
  Speaker 4: is something to do about it, and the conversation is
• 12:04
  Speaker 4: really just the first step, because once the conversation builds,
• 12:07
  Speaker 4: then the National Institutes of Health might fund bigger studies
• 12:11
  Speaker 4: so that we can say there is a treatment during pregnancy,
• 12:15
  Speaker 4: which that's a little bit complicated right now, but there's
• 12:19
  Speaker 4: evidence coming out of Israel that there is an antiviral
• 12:22
  Speaker 4: to take during pregnancy that can greatly reduce the risk
• 12:25
  Speaker 4: of it reaching the fetus. So until we have the
• 12:28
  Speaker 4: education in place and that conversation between pregnant women and
• 12:33
  Speaker 4: their doctors. We're not moving forward to fix CMB. We're
• 12:37
  Speaker 4: just saying what doctors have said for the last seventy years,
• 12:40
  Speaker 4: which is we're washing our hands of this and let's
• 12:44
  Speaker 4: kind of continue to keep it quiet because it's going
• 12:47
  Speaker 4: to scare women. Well, keeping it quiet is not just
• 12:51
  Speaker 4: scaring women, it's disabling children, and that's not fair. And
• 12:55
  Speaker 4: I think it's important not to fear monger, but to
• 12:57
  Speaker 4: put it in the place of all the other things
• 13:00
  Speaker 4: that we do during pregnancy that are preventive, like preventing
• 13:04
  Speaker 4: spina bifida with prenatals. You know, that's more proactive than education.
• 13:09
  Speaker 4: But toxoplasmosis, you know, avoiding kitty litter, which affects one
• 13:13
  Speaker 4: in ten thousand babies versus CMV infecting one in two
• 13:18
  Speaker 4: hundred babies. If we can do that about toxoplasmosis, we
• 13:22
  Speaker 4: can do that about CMB. Toddlers are in our faces,
• 13:25
  Speaker 4: but we can do better at knowing that they pose
• 13:27
  Speaker 4: a risk.
• 13:28
  Speaker 2: And I think part of what I hear in some
• 13:32
  Speaker 2: of this pushback is we don't like to tell people
• 13:35
  Speaker 2: here is something to be afraid of for which we
• 13:39
  Speaker 2: have only a partial and somewhat under research solution. Right,
• 13:43
  Speaker 2: So it's fine to say here's something to be afraid
• 13:45
  Speaker 2: of and here's what you do about it.
• 13:46
  Speaker 1: Like, we're very comfortable with that.
• 13:48
  Speaker 2: I think there's too many things in some sense that
• 13:50
  Speaker 2: we tell people to be to be afraid of. But
• 13:53
  Speaker 2: this space of saying, you know, this is actually something
• 13:55
  Speaker 2: that you know is a concern. You shouldn't why awake
• 13:58
  Speaker 2: at night thinking about it all the time, but it
• 14:01
  Speaker 2: is a concern, right, and we have a partial solution.
• 14:04
  Speaker 2: We don't like that because it feels unproductive, I guess,
• 14:08
  Speaker 2: or you know, likable sponsor more questions or that there
• 14:11
  Speaker 2: will be some sort of blowback there. And I think
• 14:13
  Speaker 2: that's just like that's all the patients, that's all patients
• 14:16
  Speaker 2: like to hear. And as a result, it is not
• 14:18
  Speaker 2: often the message that you know, we like to deliver.
• 14:22
  Speaker 3: Yeah, and I do think it's it's complicated.
• 14:25
  Speaker 4: I mean, I think there are very good doctors who
• 14:27
  Speaker 4: don't want to worry their patients, who don't want to
• 14:29
  Speaker 4: send them home with disease that will require for their research.
• 14:35
  Speaker 4: I mean, CMV is not simple. It's treatments aren't simple,
• 14:38
  Speaker 4: it's presentation isn't simple. It's history isn't. And yet women,
• 14:43
  Speaker 4: and this is a big part of my book, is
• 14:45
  Speaker 4: that we are our capacity is beyond what doctors are
• 14:49
  Speaker 4: allowing us to have, and we are literally more capable
• 14:54
  Speaker 4: of containing during pregnancy than any time in our lives.
• 14:58
  Speaker 4: And women are the most part very willing to take
• 15:03
  Speaker 4: on the task of a partial solution as opposed to
• 15:07
  Speaker 4: no conversation. The majority of doctors who actually talk deeply
• 15:12
  Speaker 4: about ZMV and understand it do want women to know.
• 15:15
  Speaker 4: And so another part of this is just a miseducation,
• 15:19
  Speaker 4: and a lot of physicians have not learned the ins
• 15:23
  Speaker 4: and outs of CMV from medical school forward, so they
• 15:26
  Speaker 4: truly don't believe that it is something that is prevalent
• 15:32
  Speaker 4: and that it could be prevented through these simple hygienic measures.
• 15:35
  Speaker 4: They just think, because in the fifties it was deemed
• 15:38
  Speaker 4: something that we could never eliminate, we might as well
• 15:42
  Speaker 4: not worry women about it, And so that has just
• 15:44
  Speaker 4: been handed down. And almost every doctor I know, when
• 15:48
  Speaker 4: given the chance to look more closely at it, is
• 15:52
  Speaker 4: open minded and says I can't believe this, Like doctor
• 15:56
  Speaker 4: Suzanne Covin, who wrote a letter to a young female physician,
• 16:02
  Speaker 4: and who I quote in the book, she called the
• 16:04
  Speaker 4: CMV data gobsmacking. She just couldn't believe that her whole
• 16:09
  Speaker 4: life as a doctor, she did not know this hidden history.
• 16:14
  Speaker 2: So I'd love to talk a little bit more about
• 16:17
  Speaker 2: kind of your path after Anna's birth. So you spend
• 16:20
  Speaker 2: a bunch of time getting to a diagnosis, and yeah,
• 16:25
  Speaker 2: I guess I just wonder if you talk a little
• 16:26
  Speaker 2: bit about that process for you.
• 16:29
  Speaker 4: Well, a large part of the book takes place on
• 16:32
  Speaker 4: a remote island in Sitka, Alaska. Our lives are just
• 16:36
  Speaker 4: like so ridiculous, So we leave Colorado for four months
• 16:40
  Speaker 4: of the year to live on this small, foggy island
• 16:43
  Speaker 4: in Alaska. The town is called Sitka, and there is
• 16:47
  Speaker 4: one hospital there, and luckily it's a good hospital. But
• 16:50
  Speaker 4: we did not test Anna until the day before I
• 16:53
  Speaker 4: was flying to Alaska with my girls and my mom,
• 16:57
  Speaker 4: and so we didn't receive her diagnosis till we were
• 17:00
  Speaker 4: totally apart from the medical mainstream. I got a phone
• 17:04
  Speaker 4: call that she had CMV and I had researched it
• 17:09
  Speaker 4: in the interim and was just I mean, it was
• 17:13
  Speaker 4: like the floor had been ripped out from under me.
• 17:16
  Speaker 4: To know that she had this disease that came with
• 17:19
  Speaker 4: so many unknowns. She could be fine at birth and
• 17:23
  Speaker 4: lose oliverr hearing, and become blind and have cerebral palsy.
• 17:27
  Speaker 4: She might not live past the age of two or three,
• 17:29
  Speaker 4: and some of these babies who are severely disabled do
• 17:33
  Speaker 4: look fine at birth, And with Anna being symptomatic, it
• 17:37
  Speaker 4: was just this immense worry that followed me throughout the
• 17:42
  Speaker 4: rest of her early childhood. And so we went to
• 17:46
  Speaker 4: the hospital and sikh after we got the phone call,
• 17:48
  Speaker 4: and we have a great pediatrician there who said, to
• 17:53
  Speaker 4: be honest, this is a very serious disease. I'm going
• 17:56
  Speaker 4: to have to do some research at home. And I
• 17:58
  Speaker 4: was actually very moved by his willingness to say that
• 18:02
  Speaker 4: he didn't know enough and his willingness to go do more.
• 18:06
  Speaker 4: And so about a month later I flew down to
• 18:10
  Speaker 4: Seattle with Anna because the hearing test equipment in Sikko
• 18:15
  Speaker 4: was not adequate enough to see if she could hear.
• 18:18
  Speaker 4: She wasn't, her brain wasn't making any instinctual responses to sound,
• 18:23
  Speaker 4: but I just had this weird hope that she was hearing,
• 18:25
  Speaker 4: because she would turn towards sounds and probably just coincidentally
• 18:30
  Speaker 4: was moving towards motion, because when I got to Seattle
• 18:33
  Speaker 4: and we had what's called an ABR test, it's a
• 18:35
  Speaker 4: two hour auditory brainstem response test, she had no response
• 18:40
  Speaker 4: at all. And so then, knowing that she was profoundly deaf,
• 18:46
  Speaker 4: sort of broke open this question of what else was
• 18:50
  Speaker 4: CMV doing without our being able to know? And really
• 18:53
  Speaker 4: that's just a question that CMV mothers live with, and
• 18:57
  Speaker 4: that all mothers live with. What is happening in our
• 19:00
  Speaker 4: y's brain and what has our birth experience given to them,
• 19:05
  Speaker 4: and what has our parenting practices enabled in their bodies?
• 19:10
  Speaker 4: We never know, and she will always be a great
• 19:12
  Speaker 4: mystery to me. But she ended up she met all
• 19:17
  Speaker 4: of her milestones late. She did not crawl till she
• 19:21
  Speaker 4: was like thirteen months old. I think she did not
• 19:25
  Speaker 4: ever have any sign of choreo retinitis, which is the
• 19:30
  Speaker 4: manifestation of the virus in the eye that can make
• 19:32
  Speaker 4: a child go blind, and she ended up walking around
• 19:37
  Speaker 4: the age of two. We did this therapy called the
• 19:40
  Speaker 4: Na ben Yelle method, which is an Israeli movement therapy,
• 19:44
  Speaker 4: and I read her book. It's called Kids Beyond limits.
• 19:47
  Speaker 4: It's excellent and it's great for any parenting. It basically
• 19:51
  Speaker 4: says milestones are enables to approach to parenting and kids
• 19:55
  Speaker 4: will really do things on their own time, and to
• 19:58
  Speaker 4: hold them to this standard timeline is to expect of
• 20:02
  Speaker 4: them things that might not be innately part of their system.
• 20:07
  Speaker 4: It's like handing a kid a guitar and saying play
• 20:10
  Speaker 4: it faster when they're starting to learn guitar, Like you
• 20:13
  Speaker 4: have to allow it. You have to, you know, engender
• 20:16
  Speaker 4: it with patience and hope and learning. So I really
• 20:21
  Speaker 4: loved that book and it's actually helped me parent all
• 20:24
  Speaker 4: of my children to remember that like, emotional maturity is
• 20:27
  Speaker 4: not something that can be rash, neither is physical maturity.
• 20:31
  Speaker 4: And benchmarks in medicine are good, like we want to
• 20:34
  Speaker 4: make sure kids are not falling behind on stuff. But
• 20:37
  Speaker 4: as a parent, I really appreciated that empathetic, slow method
• 20:42
  Speaker 4: of watching Anna grow and so we ended up learning
• 20:47
  Speaker 4: sign language. There's a free program in the state of
• 20:49
  Speaker 4: Colorado where they a deaf adult comes to your family
• 20:53
  Speaker 4: and once a week teaches you sign language, and we
• 20:57
  Speaker 4: really loved the teachers. They became like family members and
• 21:01
  Speaker 4: we learned over the course of six years a pretty
• 21:04
  Speaker 4: good basis of sign language. We are nowhere near fluent.
• 21:07
  Speaker 4: But we also decided to get Anna Cochlear implants. There's
• 21:11
  Speaker 4: no deaf people on our island in Sikka. One child
• 21:15
  Speaker 4: actually moved. There is in the book who is deaf,
• 21:19
  Speaker 4: and he was a real gift to our family. But
• 21:21
  Speaker 4: we just wanted to give her everything we could, knowing
• 21:24
  Speaker 4: that CMV might also impact her fine motor skills to
• 21:27
  Speaker 4: do a sign language asl and we just thought, give
• 21:33
  Speaker 4: her everything, make use of every resource there is. And
• 21:37
  Speaker 4: actually in the deaf world, we never experienced any kind
• 21:40
  Speaker 4: of backlash from any deaf person that we had made
• 21:43
  Speaker 4: the wrong choice. That's something we prepared ourselves for. But
• 21:46
  Speaker 4: we were always met with love. So she ended up
• 21:50
  Speaker 4: being able to speak, and she is thriving and she's
• 21:55
  Speaker 4: just remarkable to us. And throughout the process of watching
• 21:59
  Speaker 4: her grow, also sought out families whose children had died
• 22:03
  Speaker 4: from congenital CMV and whose children were severely disabled and
• 22:08
  Speaker 4: just loved their children and loved them and really learned
• 22:13
  Speaker 4: from them the impact of the silence of CMV and
• 22:17
  Speaker 4: what life looks like all along the spectrum and it's
• 22:20
  Speaker 4: a beautiful spectrum, but it's also painful, and so that
• 22:25
  Speaker 4: ended up being a large chunk of the book too,
• 22:27
  Speaker 4: was a biography of these other families.
• 22:30
  Speaker 2: Yeah, it's extremely powerful. So I want to end by
• 22:33
  Speaker 2: asking about advocacy. So you talk some in the book
• 22:35
  Speaker 2: about sort of what you are advocating for here. So
• 22:38
  Speaker 2: we talked about the idea of education and of sort
• 22:41
  Speaker 2: of doctors educating women who are pregnant about the ways
• 22:45
  Speaker 2: that they can prevent this. What else do you see,
• 22:47
  Speaker 2: I mean, do you see a role for a sort
• 22:48
  Speaker 2: of broader policy here and what is the policy that
• 22:51
  Speaker 2: you want?
• 22:52
  Speaker 4: So right now, in a lot of states, there's a
• 22:57
  Speaker 4: push for policy change to educate pregnant women, to educate
• 23:01
  Speaker 4: healthcare providers, and to educate hospitals on how to implement
• 23:08
  Speaker 4: just the conversation about CMB, whether women are pregnant or
• 23:12
  Speaker 4: whether they have a child who's facing a diagnosis with CMB.
• 23:16
  Speaker 4: The other big policy push is to test all newborns
• 23:19
  Speaker 4: for CMB. So this is the other reason that the
• 23:22
  Speaker 4: conversation is important during pregnancy. We might not have a
• 23:26
  Speaker 4: perfect thing to tell women during pregnancy, but we do
• 23:29
  Speaker 4: have a powerful thing to treat children who are born
• 23:32
  Speaker 4: with CMB, and if their parents and doctor haven't heard
• 23:34
  Speaker 4: of CMB, we are not treating the newborns who have it,
• 23:38
  Speaker 4: and in fact, we are treating between zero and ten
• 23:42
  Speaker 4: percent of kids born with CMB with a drug that
• 23:45
  Speaker 4: is effective. So Anna did take this anti viral because
• 23:49
  Speaker 4: she received her diagnosis in time. But the policy push
• 23:53
  Speaker 4: is in some states to test children who have failed
• 23:56
  Speaker 4: their hearing test or who have a sign of CMB
• 23:59
  Speaker 4: a birth, which is called targeted testing, So we would
• 24:01
  Speaker 4: be testing the ones who have a sign of it
• 24:03
  Speaker 4: through targeted testing. If we test all newborns, then we
• 24:08
  Speaker 4: have better data and we're way more likely to catch
• 24:12
  Speaker 4: more babies who have CMB and qualify for the medication
• 24:15
  Speaker 4: for the anti viral, because with the vast majority being
• 24:19
  Speaker 4: asymptomatic at birth, we're going to miss tons of kids
• 24:23
  Speaker 4: if we're only targeted testing when they have a sign
• 24:25
  Speaker 4: of CMB. So the anti viral it's called valgan cyclovir,
• 24:30
  Speaker 4: and it's effective at stopping the progression of CMB in
• 24:33
  Speaker 4: the brain and in some cases stopping the progression and
• 24:37
  Speaker 4: even reversing the progression of hearing loss in babies. So
• 24:42
  Speaker 4: the automatic or universal testing of all newborns is something
• 24:46
  Speaker 4: that is in motion now because a doctor in Minnesota,
• 24:50
  Speaker 4: doctor Mark Schlice, he passed legislation to test all newborns
• 24:55
  Speaker 4: in Minnesota for CMV through the newborn dried blood spot,
• 24:59
  Speaker 4: which is the heel that we already have in place
• 25:01
  Speaker 4: in all hospitals. And it's not perfect, and he admits
• 25:05
  Speaker 4: that it's about eighty five percent what's the other word
• 25:09
  Speaker 4: in testing specific? Yet you know better, so we have
• 25:14
  Speaker 4: a margin of error there. But he says, let's do
• 25:16
  Speaker 4: it and in ten years we'll have something better. And
• 25:19
  Speaker 4: you can't let the perfect be the enemy of the good.
• 25:22
  Speaker 4: Let's test all the babies and see how many more
• 25:25
  Speaker 4: we capture with the newborn dried blood spot because it
• 25:30
  Speaker 4: requires no extra infrastructure like testing. You can test very
• 25:36
  Speaker 4: effectively for CMB using saliva or urine, but those are
• 25:40
  Speaker 4: expensive because you have to train the whole hospital system
• 25:43
  Speaker 4: how to gather the specimen. So yeah, so a lot
• 25:47
  Speaker 4: of states have these policies in motion and the goal
• 25:52
  Speaker 4: is to eventually add it to the RUSP, the RUSP,
• 25:56
  Speaker 4: which is the Recommended Uniform Screening Panel, which would allow
• 26:00
  Speaker 4: it to be tested for in all states on all newborns,
• 26:03
  Speaker 4: and the National CMV Foundation has applied to add CMV
• 26:08
  Speaker 4: to the RESP, but that can be another three to
• 26:11
  Speaker 4: five years before it's on there and available to all states.
• 26:14
  Speaker 1: Well, I very much hope that you make progress here.
• 26:17
  Speaker 2: I think my guess is that you will make some
• 26:19
  Speaker 2: progress on the book is at.
• 26:21
  Speaker 1: Least a first awesome stuff.
• 26:22
  Speaker 3: Thank you.
• 26:23
  Speaker 1: So. The book is called Remedies for Sorrow.
• 26:24
  Speaker 2: It is absolutely fantastic and thank you again for joining me.
• 26:30
  Speaker 3: Thanks so much, Emily, thanks for having me here, Thanks
• 26:36
  Speaker 3: for listening.
• 26:37
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• 26:40
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• 26:45
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• 26:50
  Speaker 3: Talk to you soon,