WEBVTT 1 00:00:00.400 --> 00:00:01.640 So welcome to parent Data. 2 00:00:02.120 --> 00:00:05.840 I am absolutely thrilled to invite Megan Nixt to join 3 00:00:05.880 --> 00:00:09.920 me today. Meghan is an author. Her book Remedies for 4 00:00:10.039 --> 00:00:14.560 Sorrow is out I believe tomorrow based on when you're 5 00:00:14.560 --> 00:00:18.120 hearing this podcast, and I'm just really thrilled to get 6 00:00:18.160 --> 00:00:20.759 a chance to talk to her about it. So Meghan, welcome, 7 00:00:20.760 --> 00:00:21.720 Thank you for joining me. 8 00:00:22.440 --> 00:00:24.040 Thank you, thanks for having me Emily. 9 00:00:24.440 --> 00:00:27.800 I would love to start by just asking you to 10 00:00:27.840 --> 00:00:32.320 introduce yourself and introduce the book in whatever way feels 11 00:00:32.360 --> 00:00:33.440 right to you. 12 00:00:33.479 --> 00:00:35.360 Great. So I'm a mother. 13 00:00:35.720 --> 00:00:39.120 I'm actually a mother of five, just recently had my fifth, 14 00:00:39.760 --> 00:00:43.720 and when I was pregnant with my second, I had 15 00:00:43.720 --> 00:00:46.639 a feeling something was different about that pregnancy. I had 16 00:00:46.640 --> 00:00:51.000 a toddler at home, and unbeknownst to me, I had 17 00:00:51.120 --> 00:00:55.360 contracted a virus from my toddler called cytomegalovirus or CMV. 18 00:00:56.200 --> 00:00:59.000 But it wasn't until my second daughter, Anna was born 19 00:00:59.320 --> 00:01:03.520 that we realized what CMV even is, and she was 20 00:01:03.560 --> 00:01:08.360 born profoundly deaf and moderately delayed from CMV, and that 21 00:01:08.480 --> 00:01:13.560 began my journey investigating the disease, writing a book about it, 22 00:01:13.720 --> 00:01:18.240 and just paying extra close attention to the way parenthood 23 00:01:18.440 --> 00:01:21.880 had been presented to me and was being presented to 24 00:01:21.920 --> 00:01:27.160 me through social media, through my relationships, through the health system, 25 00:01:27.880 --> 00:01:31.039 and just coming to terms with a truth that didn't 26 00:01:31.080 --> 00:01:34.080 seem to be aired to me as a mother until 27 00:01:34.400 --> 00:01:37.080 I became one, and continues to be that way every 28 00:01:37.120 --> 00:01:39.760 time I have a child. It's like, oh, this is 29 00:01:39.760 --> 00:01:41.959 a new thing that I never knew existed and that 30 00:01:42.200 --> 00:01:47.200 was never spoken about. But CMV seems particularly silenced in history, 31 00:01:47.600 --> 00:01:51.200 in medicine and socially. So that's the basis of my 32 00:01:51.280 --> 00:01:54.760 book was, you know, exposing that truth. 33 00:01:55.520 --> 00:02:00.760 It is a very profound book and very both very readable. 34 00:02:00.880 --> 00:02:03.440 I mean, you're an excellent writer, but also I think 35 00:02:03.480 --> 00:02:06.040 the sort of feeling, particularly at the start of the 36 00:02:06.080 --> 00:02:07.880 book when you sort of talk about the journey of 37 00:02:07.880 --> 00:02:11.520 trying to figure out what was wrong and the feeling 38 00:02:11.560 --> 00:02:15.160 of sort of knowing that something's wrong, but also just. 39 00:02:15.160 --> 00:02:16.639 The kind of search for that. 40 00:02:17.320 --> 00:02:21.520 For me, it felt very resonant with a lot of 41 00:02:21.560 --> 00:02:23.800 the way early parenting can feel and sort of the 42 00:02:23.800 --> 00:02:27.680 way that our instincts can feel like we are explaining 43 00:02:27.720 --> 00:02:29.600 like no, you don't understand, there's something going on here, 44 00:02:29.600 --> 00:02:32.240 and I need to understand it better, and we need 45 00:02:32.280 --> 00:02:33.800 to get to the bottom of it, and sort of 46 00:02:33.840 --> 00:02:37.079 being confronted with sometimes a system that is not really 47 00:02:37.120 --> 00:02:39.639 helping us get to the bottom of those things. 48 00:02:40.120 --> 00:02:44.320 And I think pregnancy in general is medicalized and something 49 00:02:44.360 --> 00:02:47.480 to be fixed, and you sort of feel like you 50 00:02:47.600 --> 00:02:51.800 just move through these appointments without being really spoken to 51 00:02:53.400 --> 00:02:56.760 or understood, Especially with my first and then with my 52 00:02:56.840 --> 00:03:00.440 second because of CMV, I kept thinking something is going on, 53 00:03:00.520 --> 00:03:04.720 Like I just intuitively knew that something was different, that something. 54 00:03:04.800 --> 00:03:07.239 She was too small. I could tell when I looked 55 00:03:07.240 --> 00:03:09.040 in the mirror, I was too small. And then when 56 00:03:09.080 --> 00:03:12.440 she was born she was five pounds, went home with 57 00:03:12.480 --> 00:03:15.920 a four pound baby and nothing, nobody said anything to me, 58 00:03:16.160 --> 00:03:18.280 and I was like, am I going crazy? I just 59 00:03:18.320 --> 00:03:21.600 feel like there's this giant elephant in the room. And 60 00:03:21.639 --> 00:03:23.600 it turns out the elephant is in the room of 61 00:03:23.680 --> 00:03:28.800 every pregnancy with CMB because it's not disclosed to pregnant women. 62 00:03:29.120 --> 00:03:32.840 But in general, I feel like, right now, so Anna, 63 00:03:32.960 --> 00:03:35.840 my child with CMV, she's almost eight. I think now 64 00:03:36.200 --> 00:03:39.720 thinks in large part to year books, but many others, 65 00:03:40.360 --> 00:03:45.880 pregnancy is being portrayed more realistically. The needle is moving slowly, 66 00:03:46.160 --> 00:03:49.200 but I see it moving, you know, in literature for sure. 67 00:03:49.680 --> 00:03:52.800 But I did have that experience of not feeling seen 68 00:03:52.920 --> 00:03:56.200 or heard, and then it turned out almost validating to 69 00:03:56.240 --> 00:03:58.880 see that, oh, this entire disease hasn't been seen or 70 00:03:58.880 --> 00:04:02.360 heard either, not just me feeling like a crazy person. 71 00:04:03.320 --> 00:04:05.160 Yeah, so I want to I want to dive into 72 00:04:05.200 --> 00:04:08.800 this because I I you actually mentioned Expecting Better in 73 00:04:09.000 --> 00:04:12.040 your book, which thank you for reading it, But you 74 00:04:12.120 --> 00:04:16.040 note that I do not talk about CMB in the book, 75 00:04:16.200 --> 00:04:18.480 which is something we are also going to remedy. 76 00:04:18.920 --> 00:04:21.040 But it is, you know, in a sense like I 77 00:04:21.080 --> 00:04:22.200 think of myself. 78 00:04:21.839 --> 00:04:24.200 As trying to write books that surface a lot of 79 00:04:24.920 --> 00:04:27.320 information that people you know otherwise might not get and 80 00:04:27.400 --> 00:04:28.680 keep them as informed as possible. 81 00:04:28.720 --> 00:04:30.279 And this is something I did not know about. 82 00:04:30.360 --> 00:04:33.039 So you are the expert on this here, certainly on 83 00:04:33.080 --> 00:04:35.159 this call, and I think in some very broad senses 84 00:04:35.200 --> 00:04:40.200 as well. Give us the sort of overview of CMB. Yes, 85 00:04:40.200 --> 00:04:44.560 it's a virus. What is the implication for pregnancy? How 86 00:04:44.560 --> 00:04:45.719 do we think about it in this space? 87 00:04:46.600 --> 00:04:46.840 Sure? 88 00:04:47.000 --> 00:04:51.520 So, CMV is a ubiquitous virus that is generally harmless 89 00:04:51.560 --> 00:04:56.440 to the healthy population, Toddlers can have CMV and you'd 90 00:04:56.440 --> 00:04:57.040 never know it. 91 00:04:57.360 --> 00:04:58.400 Adults can have it. 92 00:04:58.400 --> 00:05:01.520 It's dangerous if you're immuno so pressed, but it's very 93 00:05:01.600 --> 00:05:05.960 dangerous if you are pregnant and CMV transmits through the 94 00:05:06.000 --> 00:05:10.200 saliva and you're in of toddlers, and generally it is 95 00:05:10.320 --> 00:05:13.360 present and contagious in the saliva of one out of 96 00:05:13.400 --> 00:05:17.280 three toddlers. When you contract it when pregnant, if it's 97 00:05:17.320 --> 00:05:21.120 the first time that you've contracted it, you have about 98 00:05:21.120 --> 00:05:24.880 a thirty three percent chance of it crossing the placenta 99 00:05:25.200 --> 00:05:28.800 and reaching the fetus, and if that happens, it can 100 00:05:28.920 --> 00:05:34.640 cause a huge range of symptoms in the baby. Blindness, deafness, 101 00:05:34.760 --> 00:05:40.680 cerebral palsy, epilepsy, autism, early infant death, still birth are 102 00:05:40.720 --> 00:05:43.960 some of them. It's the leading cause of birth defects 103 00:05:44.120 --> 00:05:46.320 in the United States and likely the world, though we 104 00:05:46.360 --> 00:05:50.360 don't have great data on the global population. If it's 105 00:05:50.440 --> 00:05:54.400 not your first time contracting it, which is called a reinfection, 106 00:05:54.920 --> 00:05:57.479 it's a lot less likely to cross the placenta but 107 00:05:57.560 --> 00:06:03.960 can still result in disability, and worldwide, reinfections are causing 108 00:06:04.120 --> 00:06:09.520 just as many symptomatic babies with congenital CMVs as like 109 00:06:09.640 --> 00:06:13.720 primary cases are in the US, I believe if I'm 110 00:06:13.760 --> 00:06:15.839 stating that right, basically think. 111 00:06:16.240 --> 00:06:19.080 To like to sort of flesh that piece out for people, 112 00:06:19.160 --> 00:06:21.680 just to be sort of think about the numertor denominator piece. 113 00:06:21.800 --> 00:06:25.039 Most people coming into pregnancy have had CMB at some 114 00:06:25.120 --> 00:06:28.159 point before, so if they are affected again, it will 115 00:06:28.200 --> 00:06:32.120 be a reinfection, and then that can have some consequences 116 00:06:32.320 --> 00:06:35.240 less severe, but because that's a much larger number of people, 117 00:06:35.360 --> 00:06:40.039 actually most of the birth effects associated with CMB are 118 00:06:40.839 --> 00:06:45.120 a result of reinfections. Just as the denominator of susceptible 119 00:06:45.120 --> 00:06:46.680 people there is bigger. 120 00:06:46.920 --> 00:06:48.839 Exactly, yes, what you said. 121 00:06:49.200 --> 00:06:52.320 So in a reinfection it'll cross the pluscent about one 122 00:06:52.400 --> 00:06:55.719 percent of the time. And so a big problem with 123 00:06:55.800 --> 00:06:58.920 CMV is that it does tend to be invisible at 124 00:06:58.960 --> 00:07:02.520 birth when the symptomatic babies you might have, like my 125 00:07:02.600 --> 00:07:05.840 daughter was symptomatic at birth. She was small for gestational 126 00:07:05.880 --> 00:07:08.720 age because she was forty weeks but five pounds, and 127 00:07:08.760 --> 00:07:13.200 she failed her hearing tests. So those are visible quote 128 00:07:13.280 --> 00:07:16.080 unquote symptoms. I mean, the deafness is not visible. But 129 00:07:16.240 --> 00:07:20.560 because we have this great system today for testing newborns 130 00:07:20.640 --> 00:07:23.960 hearing to flag them for hearing loss or other diseases. 131 00:07:24.440 --> 00:07:28.880 That is really like the big signifier that CMV might 132 00:07:28.920 --> 00:07:33.880 be present. However, most hospitals are not testing babies for 133 00:07:33.960 --> 00:07:37.000 CMV even if they do fail their hearing tests, and 134 00:07:37.160 --> 00:07:40.080 even though CMV is the leading cause of non genetic 135 00:07:40.120 --> 00:07:42.760 deafness in the world. So a lot of the advocacy 136 00:07:42.800 --> 00:07:46.800 work around CMV is using this red flag of the 137 00:07:47.080 --> 00:07:50.440 failed hearing loss tests to say this baby might have 138 00:07:50.520 --> 00:07:55.520 other things going on besides the hearing tests. So basically 139 00:07:55.640 --> 00:08:00.320 the virus, you want to try to avoid it when 140 00:08:00.400 --> 00:08:04.160 pregnant because of the damage that it can cause. One 141 00:08:04.160 --> 00:08:08.880 out of five babies will have CMB, who will have 142 00:08:08.920 --> 00:08:11.680 symptomatic CMB who are born with it. Four out of 143 00:08:11.800 --> 00:08:16.840 five will likely not have lifelong impairments from CMB. But again, 144 00:08:16.920 --> 00:08:19.280 the data is pretty shaky on that. And I was 145 00:08:19.280 --> 00:08:22.480 at a conference in Alabama where there's a lot of 146 00:08:22.600 --> 00:08:25.680 research coming out about CMB, and one of the doctors said, 147 00:08:25.720 --> 00:08:29.440 we've never really seen a true lifelong asymptomatic case. Even 148 00:08:29.600 --> 00:08:34.080 the kids who are deemed asymptomatic are having behavioral issues, 149 00:08:34.160 --> 00:08:38.160 sleep issues, eating issues, and so you know, in my head, 150 00:08:38.200 --> 00:08:42.319 we really don't have enough cumulative data to say that 151 00:08:42.400 --> 00:08:46.199 in four out of five cases, CMB leaves a child unharmed. 152 00:08:46.800 --> 00:08:50.720 So sometimes doctors will say, yeah, but the vast majority 153 00:08:50.720 --> 00:08:53.640 of kids with CMB are okay, twenty percent is a 154 00:08:53.720 --> 00:08:58.920 large number of kids to still have basically disabilities from CMB, 155 00:08:59.280 --> 00:09:02.080 and eight percent to have other things going on that 156 00:09:02.120 --> 00:09:04.240 we haven't even connected back to the disease. 157 00:09:05.240 --> 00:09:06.360 Yeah, And so just I mean, I. 158 00:09:06.360 --> 00:09:10.720 Think it's really worth like underscoring that, you know, we're 159 00:09:10.760 --> 00:09:13.200 talking about something that is the leading cause of birth 160 00:09:13.240 --> 00:09:18.680 defects in the US, and yet it is a topic 161 00:09:18.720 --> 00:09:23.000 that I think many women and even to some extent 162 00:09:23.040 --> 00:09:28.199 their doctors are not talking about or thinking about during pregnancy. 163 00:09:28.280 --> 00:09:32.160 So we have pregnant women who are often encountering toddlers, 164 00:09:32.200 --> 00:09:39.000 and toddlers often have this virus and that is a risk, 165 00:09:39.160 --> 00:09:41.640 and but yet again we're not It's something we're not 166 00:09:41.679 --> 00:09:43.120 talking about. And so I know a lot of you, 167 00:09:43.520 --> 00:09:45.600 a lot of your work has after animal is born, 168 00:09:45.640 --> 00:09:48.400 has been in this space of trying to think about advocacy, 169 00:09:48.480 --> 00:09:53.240 thinking about informing people about this. I after having read 170 00:09:53.240 --> 00:09:55.400 your brook, talked to a bunch of doctors about sort 171 00:09:55.400 --> 00:09:57.480 of this question of CMB, and you know, why are 172 00:09:57.480 --> 00:10:00.360 we not talking about this? And the thing that they 173 00:10:00.800 --> 00:10:05.280 say back is there's really nothing to do. We don't 174 00:10:05.280 --> 00:10:09.160 have a vaccine because this is large often in adults 175 00:10:09.200 --> 00:10:11.360 would be just asymptomatic or just feel like like a 176 00:10:11.400 --> 00:10:13.760 cold typically, and because. 177 00:10:13.520 --> 00:10:16.760 It's everywhere, if I test people for this. 178 00:10:17.800 --> 00:10:19.760 It's just going to scare them, it's just going to 179 00:10:19.800 --> 00:10:20.800 make them anxious. 180 00:10:20.880 --> 00:10:22.840 And there's really nothing that we can do. We can't 181 00:10:22.880 --> 00:10:23.880 offer people anything. 182 00:10:24.400 --> 00:10:26.920 And so I'm sort of curious from the other side 183 00:10:26.960 --> 00:10:30.480 of this, like what you think about that that claim? 184 00:10:30.720 --> 00:10:34.880 That argument, Well, I think it is fairly paternalistic to 185 00:10:34.960 --> 00:10:37.920 say that, to say that women don't deserve an education 186 00:10:38.320 --> 00:10:42.080 in something that could be prevented just because doctors don't 187 00:10:42.120 --> 00:10:44.040 have the power to fix it. That's not how we 188 00:10:45.320 --> 00:10:48.559 raise humans grow. Humans are humans. We want to know 189 00:10:48.800 --> 00:10:52.480 and studies have shown that ninety plus percent of women 190 00:10:52.920 --> 00:10:55.320 want to know about CMV, want to know what they 191 00:10:55.320 --> 00:10:59.040 can do to reduce their risk. So to me, you know, 192 00:10:59.120 --> 00:11:01.800 it just falls in to that truth that we all 193 00:11:01.880 --> 00:11:04.800 are coming to know about the medical field, which is 194 00:11:04.840 --> 00:11:09.199 that it is often governed by money, and doctors don't 195 00:11:09.200 --> 00:11:13.760 make money on conversations as much as the medical system 196 00:11:13.880 --> 00:11:19.240 does on interventions and vaccines and being able to do 197 00:11:19.320 --> 00:11:26.040 something that will in a more quantifiable way heal people. 198 00:11:26.640 --> 00:11:32.199 So really the knowledge of CMV prevention is what we 199 00:11:32.240 --> 00:11:35.240 need right now, which is that if we can do 200 00:11:35.360 --> 00:11:39.160 better to avoid our children's saliva by not kissing them 201 00:11:39.160 --> 00:11:44.040 on the mouth, keeping toothbrushes to ourselves, not finishing their snacks, 202 00:11:44.440 --> 00:11:47.520 these are very doable things, and in the studies, women 203 00:11:47.600 --> 00:11:50.720 have said they have no problem doing these things. They 204 00:11:50.800 --> 00:11:54.160 are happy if it's happy to do this. If it's 205 00:11:54.200 --> 00:11:58.000 going to prevent stillbirth, that is not something that doctors 206 00:11:58.040 --> 00:12:01.360 should be saying there's nothing to do about this. There 207 00:12:01.440 --> 00:12:04.080 is something to do about it, and the conversation is 208 00:12:04.120 --> 00:12:06.960 really just the first step, because once the conversation builds, 209 00:12:07.559 --> 00:12:11.480 then the National Institutes of Health might fund bigger studies 210 00:12:11.480 --> 00:12:15.239 so that we can say there is a treatment during pregnancy, 211 00:12:15.320 --> 00:12:19.559 which that's a little bit complicated right now, but there's 212 00:12:19.800 --> 00:12:22.840 evidence coming out of Israel that there is an antiviral 213 00:12:22.880 --> 00:12:25.600 to take during pregnancy that can greatly reduce the risk 214 00:12:25.640 --> 00:12:28.520 of it reaching the fetus. So until we have the 215 00:12:28.679 --> 00:12:33.640 education in place and that conversation between pregnant women and 216 00:12:33.679 --> 00:12:37.600 their doctors. We're not moving forward to fix CMB. We're 217 00:12:37.640 --> 00:12:40.080 just saying what doctors have said for the last seventy years, 218 00:12:40.080 --> 00:12:43.959 which is we're washing our hands of this and let's 219 00:12:44.080 --> 00:12:47.160 kind of continue to keep it quiet because it's going 220 00:12:47.200 --> 00:12:51.320 to scare women. Well, keeping it quiet is not just 221 00:12:51.320 --> 00:12:54.840 scaring women, it's disabling children, and that's not fair. And 222 00:12:55.480 --> 00:12:57.880 I think it's important not to fear monger, but to 223 00:12:57.920 --> 00:13:00.160 put it in the place of all the other things 224 00:13:00.160 --> 00:13:04.600 that we do during pregnancy that are preventive, like preventing 225 00:13:04.640 --> 00:13:09.360 spina bifida with prenatals. You know, that's more proactive than education. 226 00:13:09.520 --> 00:13:13.520 But toxoplasmosis, you know, avoiding kitty litter, which affects one 227 00:13:13.559 --> 00:13:18.360 in ten thousand babies versus CMV infecting one in two 228 00:13:18.520 --> 00:13:22.400 hundred babies. If we can do that about toxoplasmosis, we 229 00:13:22.440 --> 00:13:25.120 can do that about CMB. Toddlers are in our faces, 230 00:13:25.440 --> 00:13:27.360 but we can do better at knowing that they pose 231 00:13:27.400 --> 00:13:27.760 a risk. 232 00:13:28.800 --> 00:13:31.920 And I think part of what I hear in some 233 00:13:32.040 --> 00:13:34.920 of this pushback is we don't like to tell people 234 00:13:35.000 --> 00:13:39.480 here is something to be afraid of for which we 235 00:13:39.559 --> 00:13:43.000 have only a partial and somewhat under research solution. Right, 236 00:13:43.040 --> 00:13:45.319 So it's fine to say here's something to be afraid 237 00:13:45.360 --> 00:13:46.559 of and here's what you do about it. 238 00:13:46.760 --> 00:13:48.800 Like, we're very comfortable with that. 239 00:13:48.920 --> 00:13:50.560 I think there's too many things in some sense that 240 00:13:50.600 --> 00:13:53.200 we tell people to be to be afraid of. But 241 00:13:53.400 --> 00:13:55.840 this space of saying, you know, this is actually something 242 00:13:55.880 --> 00:13:58.480 that you know is a concern. You shouldn't why awake 243 00:13:58.520 --> 00:14:01.600 at night thinking about it all the time, but it 244 00:14:01.720 --> 00:14:04.760 is a concern, right, and we have a partial solution. 245 00:14:04.840 --> 00:14:08.800 We don't like that because it feels unproductive, I guess, 246 00:14:08.960 --> 00:14:11.880 or you know, likable sponsor more questions or that there 247 00:14:11.920 --> 00:14:13.959 will be some sort of blowback there. And I think 248 00:14:13.960 --> 00:14:16.319 that's just like that's all the patients, that's all patients 249 00:14:16.320 --> 00:14:18.280 like to hear. And as a result, it is not 250 00:14:18.760 --> 00:14:21.680 often the message that you know, we like to deliver. 251 00:14:22.720 --> 00:14:25.000 Yeah, and I do think it's it's complicated. 252 00:14:25.040 --> 00:14:27.440 I mean, I think there are very good doctors who 253 00:14:27.520 --> 00:14:29.720 don't want to worry their patients, who don't want to 254 00:14:29.760 --> 00:14:34.960 send them home with disease that will require for their research. 255 00:14:35.000 --> 00:14:38.080 I mean, CMV is not simple. It's treatments aren't simple, 256 00:14:38.200 --> 00:14:43.160 it's presentation isn't simple. It's history isn't. And yet women, 257 00:14:43.320 --> 00:14:45.120 and this is a big part of my book, is 258 00:14:45.160 --> 00:14:49.000 that we are our capacity is beyond what doctors are 259 00:14:49.080 --> 00:14:53.400 allowing us to have, and we are literally more capable 260 00:14:54.240 --> 00:14:58.200 of containing during pregnancy than any time in our lives. 261 00:14:58.240 --> 00:15:02.880 And women are the most part very willing to take 262 00:15:03.000 --> 00:15:06.960 on the task of a partial solution as opposed to 263 00:15:07.960 --> 00:15:12.760 no conversation. The majority of doctors who actually talk deeply 264 00:15:12.800 --> 00:15:15.720 about ZMV and understand it do want women to know. 265 00:15:15.920 --> 00:15:19.440 And so another part of this is just a miseducation, 266 00:15:19.800 --> 00:15:23.600 and a lot of physicians have not learned the ins 267 00:15:23.640 --> 00:15:26.680 and outs of CMV from medical school forward, so they 268 00:15:26.720 --> 00:15:31.440 truly don't believe that it is something that is prevalent 269 00:15:32.160 --> 00:15:35.520 and that it could be prevented through these simple hygienic measures. 270 00:15:35.880 --> 00:15:38.560 They just think, because in the fifties it was deemed 271 00:15:38.640 --> 00:15:42.480 something that we could never eliminate, we might as well 272 00:15:42.520 --> 00:15:44.480 not worry women about it, And so that has just 273 00:15:44.560 --> 00:15:48.360 been handed down. And almost every doctor I know, when 274 00:15:48.400 --> 00:15:51.440 given the chance to look more closely at it, is 275 00:15:52.160 --> 00:15:56.720 open minded and says I can't believe this, Like doctor 276 00:15:56.760 --> 00:16:01.400 Suzanne Covin, who wrote a letter to a young female physician, 277 00:16:02.080 --> 00:16:04.360 and who I quote in the book, she called the 278 00:16:04.360 --> 00:16:09.240 CMV data gobsmacking. She just couldn't believe that her whole 279 00:16:09.280 --> 00:16:13.720 life as a doctor, she did not know this hidden history. 280 00:16:14.800 --> 00:16:17.320 So I'd love to talk a little bit more about 281 00:16:17.400 --> 00:16:20.760 kind of your path after Anna's birth. So you spend 282 00:16:20.800 --> 00:16:25.120 a bunch of time getting to a diagnosis, and yeah, 283 00:16:25.120 --> 00:16:26.480 I guess I just wonder if you talk a little 284 00:16:26.520 --> 00:16:28.040 bit about that process for you. 285 00:16:29.200 --> 00:16:32.400 Well, a large part of the book takes place on 286 00:16:32.440 --> 00:16:36.320 a remote island in Sitka, Alaska. Our lives are just 287 00:16:36.400 --> 00:16:40.600 like so ridiculous, So we leave Colorado for four months 288 00:16:40.640 --> 00:16:43.280 of the year to live on this small, foggy island 289 00:16:43.280 --> 00:16:47.080 in Alaska. The town is called Sitka, and there is 290 00:16:47.120 --> 00:16:50.440 one hospital there, and luckily it's a good hospital. But 291 00:16:50.520 --> 00:16:53.840 we did not test Anna until the day before I 292 00:16:53.920 --> 00:16:56.360 was flying to Alaska with my girls and my mom, 293 00:16:57.040 --> 00:17:00.240 and so we didn't receive her diagnosis till we were 294 00:17:00.800 --> 00:17:04.760 totally apart from the medical mainstream. I got a phone 295 00:17:04.760 --> 00:17:09.120 call that she had CMV and I had researched it 296 00:17:09.680 --> 00:17:13.479 in the interim and was just I mean, it was 297 00:17:13.560 --> 00:17:16.080 like the floor had been ripped out from under me. 298 00:17:16.240 --> 00:17:19.560 To know that she had this disease that came with 299 00:17:19.760 --> 00:17:23.040 so many unknowns. She could be fine at birth and 300 00:17:23.320 --> 00:17:26.760 lose oliverr hearing, and become blind and have cerebral palsy. 301 00:17:27.320 --> 00:17:29.720 She might not live past the age of two or three, 302 00:17:29.800 --> 00:17:33.439 and some of these babies who are severely disabled do 303 00:17:33.880 --> 00:17:37.399 look fine at birth, And with Anna being symptomatic, it 304 00:17:37.480 --> 00:17:42.359 was just this immense worry that followed me throughout the 305 00:17:42.359 --> 00:17:45.960 rest of her early childhood. And so we went to 306 00:17:46.000 --> 00:17:48.200 the hospital and sikh after we got the phone call, 307 00:17:48.840 --> 00:17:53.199 and we have a great pediatrician there who said, to 308 00:17:53.320 --> 00:17:56.040 be honest, this is a very serious disease. I'm going 309 00:17:56.119 --> 00:17:58.080 to have to do some research at home. And I 310 00:17:58.200 --> 00:18:02.199 was actually very moved by his willingness to say that 311 00:18:02.280 --> 00:18:05.280 he didn't know enough and his willingness to go do more. 312 00:18:06.000 --> 00:18:10.080 And so about a month later I flew down to 313 00:18:10.160 --> 00:18:14.919 Seattle with Anna because the hearing test equipment in Sikko 314 00:18:15.119 --> 00:18:17.400 was not adequate enough to see if she could hear. 315 00:18:18.400 --> 00:18:22.760 She wasn't, her brain wasn't making any instinctual responses to sound, 316 00:18:23.240 --> 00:18:25.679 but I just had this weird hope that she was hearing, 317 00:18:25.720 --> 00:18:29.879 because she would turn towards sounds and probably just coincidentally 318 00:18:30.040 --> 00:18:33.320 was moving towards motion, because when I got to Seattle 319 00:18:33.359 --> 00:18:35.919 and we had what's called an ABR test, it's a 320 00:18:35.960 --> 00:18:39.960 two hour auditory brainstem response test, she had no response 321 00:18:40.000 --> 00:18:46.320 at all. And so then, knowing that she was profoundly deaf, 322 00:18:46.480 --> 00:18:50.199 sort of broke open this question of what else was 323 00:18:50.240 --> 00:18:53.720 CMV doing without our being able to know? And really 324 00:18:53.760 --> 00:18:57.040 that's just a question that CMV mothers live with, and 325 00:18:57.440 --> 00:18:59.800 that all mothers live with. What is happening in our 326 00:19:00.000 --> 00:19:05.120 y's brain and what has our birth experience given to them, 327 00:19:05.160 --> 00:19:10.240 and what has our parenting practices enabled in their bodies? 328 00:19:10.320 --> 00:19:12.600 We never know, and she will always be a great 329 00:19:12.680 --> 00:19:17.120 mystery to me. But she ended up she met all 330 00:19:17.160 --> 00:19:21.679 of her milestones late. She did not crawl till she 331 00:19:21.760 --> 00:19:25.240 was like thirteen months old. I think she did not 332 00:19:25.400 --> 00:19:29.040 ever have any sign of choreo retinitis, which is the 333 00:19:30.119 --> 00:19:32.800 manifestation of the virus in the eye that can make 334 00:19:32.840 --> 00:19:37.000 a child go blind, and she ended up walking around 335 00:19:37.040 --> 00:19:40.119 the age of two. We did this therapy called the 336 00:19:40.320 --> 00:19:43.920 Na ben Yelle method, which is an Israeli movement therapy, 337 00:19:44.080 --> 00:19:47.520 and I read her book. It's called Kids Beyond limits. 338 00:19:47.560 --> 00:19:51.160 It's excellent and it's great for any parenting. It basically 339 00:19:51.200 --> 00:19:55.760 says milestones are enables to approach to parenting and kids 340 00:19:55.800 --> 00:19:58.639 will really do things on their own time, and to 341 00:19:58.720 --> 00:20:02.600 hold them to this standard timeline is to expect of 342 00:20:02.680 --> 00:20:07.640 them things that might not be innately part of their system. 343 00:20:07.760 --> 00:20:10.360 It's like handing a kid a guitar and saying play 344 00:20:10.400 --> 00:20:13.760 it faster when they're starting to learn guitar, Like you 345 00:20:13.840 --> 00:20:16.560 have to allow it. You have to, you know, engender 346 00:20:16.600 --> 00:20:21.720 it with patience and hope and learning. So I really 347 00:20:21.720 --> 00:20:24.439 loved that book and it's actually helped me parent all 348 00:20:24.480 --> 00:20:27.800 of my children to remember that like, emotional maturity is 349 00:20:27.880 --> 00:20:31.560 not something that can be rash, neither is physical maturity. 350 00:20:31.600 --> 00:20:34.800 And benchmarks in medicine are good, like we want to 351 00:20:34.800 --> 00:20:37.399 make sure kids are not falling behind on stuff. But 352 00:20:37.480 --> 00:20:42.240 as a parent, I really appreciated that empathetic, slow method 353 00:20:42.320 --> 00:20:47.280 of watching Anna grow and so we ended up learning 354 00:20:47.320 --> 00:20:49.760 sign language. There's a free program in the state of 355 00:20:49.800 --> 00:20:53.600 Colorado where they a deaf adult comes to your family 356 00:20:53.920 --> 00:20:57.240 and once a week teaches you sign language, and we 357 00:20:57.359 --> 00:21:00.639 really loved the teachers. They became like family members and 358 00:21:01.680 --> 00:21:04.680 we learned over the course of six years a pretty 359 00:21:04.680 --> 00:21:07.440 good basis of sign language. We are nowhere near fluent. 360 00:21:07.800 --> 00:21:11.640 But we also decided to get Anna Cochlear implants. There's 361 00:21:11.680 --> 00:21:15.879 no deaf people on our island in Sikka. One child 362 00:21:15.920 --> 00:21:18.520 actually moved. There is in the book who is deaf, 363 00:21:19.160 --> 00:21:20.960 and he was a real gift to our family. But 364 00:21:21.760 --> 00:21:24.359 we just wanted to give her everything we could, knowing 365 00:21:24.400 --> 00:21:27.639 that CMV might also impact her fine motor skills to 366 00:21:27.720 --> 00:21:33.760 do a sign language asl and we just thought, give 367 00:21:33.760 --> 00:21:37.120 her everything, make use of every resource there is. And 368 00:21:37.400 --> 00:21:40.840 actually in the deaf world, we never experienced any kind 369 00:21:40.920 --> 00:21:43.400 of backlash from any deaf person that we had made 370 00:21:43.400 --> 00:21:46.560 the wrong choice. That's something we prepared ourselves for. But 371 00:21:46.600 --> 00:21:49.959 we were always met with love. So she ended up 372 00:21:50.000 --> 00:21:55.359 being able to speak, and she is thriving and she's 373 00:21:55.440 --> 00:21:59.119 just remarkable to us. And throughout the process of watching 374 00:21:59.160 --> 00:22:03.240 her grow, also sought out families whose children had died 375 00:22:03.280 --> 00:22:08.000 from congenital CMV and whose children were severely disabled and 376 00:22:08.960 --> 00:22:13.439 just loved their children and loved them and really learned 377 00:22:13.480 --> 00:22:17.679 from them the impact of the silence of CMV and 378 00:22:17.760 --> 00:22:20.680 what life looks like all along the spectrum and it's 379 00:22:20.680 --> 00:22:25.160 a beautiful spectrum, but it's also painful, and so that 380 00:22:25.359 --> 00:22:27.200 ended up being a large chunk of the book too, 381 00:22:27.320 --> 00:22:29.240 was a biography of these other families. 382 00:22:30.040 --> 00:22:33.040 Yeah, it's extremely powerful. So I want to end by 383 00:22:33.080 --> 00:22:35.359 asking about advocacy. So you talk some in the book 384 00:22:35.359 --> 00:22:38.560 about sort of what you are advocating for here. So 385 00:22:38.600 --> 00:22:41.800 we talked about the idea of education and of sort 386 00:22:41.800 --> 00:22:45.440 of doctors educating women who are pregnant about the ways 387 00:22:45.440 --> 00:22:47.520 that they can prevent this. What else do you see, 388 00:22:47.600 --> 00:22:48.880 I mean, do you see a role for a sort 389 00:22:48.880 --> 00:22:51.280 of broader policy here and what is the policy that 390 00:22:51.359 --> 00:22:52.200 you want? 391 00:22:52.600 --> 00:22:56.480 So right now, in a lot of states, there's a 392 00:22:57.240 --> 00:23:01.119 push for policy change to educate pregnant women, to educate 393 00:23:01.160 --> 00:23:08.200 healthcare providers, and to educate hospitals on how to implement 394 00:23:08.880 --> 00:23:12.480 just the conversation about CMB, whether women are pregnant or 395 00:23:12.520 --> 00:23:15.919 whether they have a child who's facing a diagnosis with CMB. 396 00:23:16.480 --> 00:23:19.879 The other big policy push is to test all newborns 397 00:23:19.880 --> 00:23:22.000 for CMB. So this is the other reason that the 398 00:23:22.080 --> 00:23:26.399 conversation is important during pregnancy. We might not have a 399 00:23:26.440 --> 00:23:29.880 perfect thing to tell women during pregnancy, but we do 400 00:23:29.960 --> 00:23:32.600 have a powerful thing to treat children who are born 401 00:23:32.640 --> 00:23:34.920