{"id":26393,"date":"2025-04-22T09:03:09","date_gmt":"2025-04-22T09:03:09","guid":{"rendered":"https:\/\/medexperts.pro\/?p=26393"},"modified":"2025-04-22T09:24:38","modified_gmt":"2025-04-22T09:24:38","slug":"my-son-has-a-rare-syndrome-so-i-turned-to-the-internet","status":"publish","type":"post","link":"https:\/\/medexperts.pro\/?p=26393","title":{"rendered":"My Son Has a Rare Syndrome. So I Turned to the Internet."},"content":{"rendered":"
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I did not know that anything was unusual until I was seven months pregnant. Inside the exam room, the technician dimmed the lights and stood astride her mysterious station. She worked her probe into the hard rind of my belly and offered selections from her trove of professional small talk: Do you know the sex? Have you picked a name?<\/em> I wanted to slice the technician out of the scene, to watch my baby on the screen with silent focus, but I also wanted to seem normal and good. So when she said, \u201cHe\u2019s sticking his tongue out,\u201d I said: \u201cAwwww. \u2026 \u201d<\/p>\n

The technician fussed with the machine. She twisted its dials and clacked at its keys and then left the room. The gel felt thick on my skin. I missed my phone. I wondered if there were any new work emails in there. When the technician returned, she ordered more poses and captured more shots. I had reported to the doctor\u2019s office for a routine scan, but as in a dream, the routine kept repeating. I watched the technician map my baby\u2019s face for secret reasons. For an hour I lay on her table, cold dread pooling inside my body.<\/p>\n

The doctor rapped on the door. He told me that he had seen something he did not like. He wondered if it could be a case of \u2014 he said a strange word, then another, then the word \u201csyndrome.\u201d The kidneys and torso were measuring large, he explained. The baby was growing very fast. The tongue was protruding from the mouth. It\u2019s not supposed to do that. The information passed uncomprehendingly through me. I would be assigned a genetic counselor, a prenatal psychologist, an obstetrician who specialized in high-risk pregnancies. Amniotic fluid would be extracted from my uterus and sent for a battery of genetic tests. I asked the doctor to write the syndrome\u2019s name on a piece of paper. \u201cDon\u2019t Google it,\u201d he advised me. Of course, as soon as I seized my phone, I did.<\/p>\n<\/div>\n<\/div>\n

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Beckwith-Wiedemann Syndrome, or BWS, is an overgrowth disorder that affects one in 10,000 births. Its features manifest most significantly in childhood. Babies born with BWS may exhibit macrosomia, or excessive growth; they may have hemihypertrophy, or asymmetrical growth; most of them have macroglossia, or an enlargement of the tongue. They may have pink capillary abnormalities on the forehead, creases on the ears, an abdominal wall defect that causes organs to develop partly outside the body and an elevated risk of certain childhood cancers. I first read this list on an officious-looking website, on my phone in the car outside the prenatal-imaging center. The site offered the caveat that not every child exhibited every trait, but my tears short-circuited the screen and it kept jumping back to the list: baby cancer, baby cancer, baby cancer<\/em>.<\/p>\n<\/div>\n<\/div>\n

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For seven months, pregnancy books, and the apps that vie to replace them, had offered me abundant scenarios on which to focus my anxieties. They drilled me on the importance of intentional movement and calculated nutrition, on the dangers of deli meats and cat litter, the risks and benefits of amniocentesis. But now my prenatal helpmeets had little to say. When I typed \u201cbirth defect\u201d and \u201cfetal abnormality\u201d into my pregnancy app, it replied: \u201cPlease try searching for something else.\u201d The last section of the fourth edition of \u201cWhat to Expect When You\u2019re Expecting\u201d is titled \u201cThe Complicated Pregnancy,\u201d and when I flipped to its end, I found that it did not discuss this syndrome or any other, though it did acknowledge how important it was not<\/em> to discuss syndromes. \u201cMost women sail through pregnancy and childbirth without any complications,\u201d it says. A reader with a \u201cproblem-free pregnancy\u201d was told to \u201csave yourself some unneeded worry\u201d by closing her book now. My pregnancy was the idea from which other pregnant women needed to be spared.<\/p>\n

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I did not know that anything was unusual until I was seven months pregnant. Inside the exam room, the technician dimmed the lights and stood astride her mysterious station. She worked her probe into the hard rind of my belly and offered selections from her trove of professional small talk: Do you know the sex? Have you picked a name? I wanted to slice the technician out of the scene, to watch my baby on the screen with silent focus, but I also wanted to seem normal and good. So when she said, \u201cHe\u2019s sticking his tongue out,\u201d I said: \u201cAwwww. \u2026 \u201dThe technician fussed with the machine. She twisted its dials and clacked at its keys and then left the room. The gel felt thick on my skin. I missed my phone. I wondered if there were any new work emails in there. When the technician returned, she ordered more poses and captured more shots. I had reported to the doctor\u2019s office for a routine scan, but as in a dream, the routine kept repeating. I watched the technician map my baby\u2019s face for secret reasons. For an hour I lay on her table, cold dread pooling inside my body.The doctor rapped on the door. He told me that he had seen something he did not like. He wondered if it could be a case of \u2014 he said a strange word, then another, then the word \u201csyndrome.\u201d The kidneys and torso were measuring large, he explained. The baby was growing very fast. The tongue was protruding from the mouth. It\u2019s not supposed to do that. The information passed uncomprehendingly through me. I would be assigned a genetic counselor, a prenatal psychologist, an obstetrician who specialized in high-risk pregnancies. Amniotic fluid would be extracted from my uterus and sent for a battery of genetic tests. I asked the doctor to write the syndrome\u2019s name on a piece of paper. \u201cDon\u2019t Google it,\u201d he advised me. Of course, as soon as I seized my phone, I did.Beckwith-Wiedemann Syndrome, or BWS, is an overgrowth disorder that affects one in 10,000 births. Its features manifest most significantly in childhood. Babies born with BWS may exhibit macrosomia, or excessive growth; they may have hemihypertrophy, or asymmetrical growth; most of them have macroglossia, or an enlargement of the tongue. They may have pink capillary abnormalities on the forehead, creases on the ears, an abdominal wall defect that causes organs to develop partly outside the body and an elevated risk of certain childhood cancers. I first read this list on an officious-looking website, on my phone in the car outside the prenatal-imaging center. The site offered the caveat that not every child exhibited every trait, but my tears short-circuited the screen and it kept jumping back to the list: baby cancer, baby cancer, baby cancer.For seven months, pregnancy books, and the apps that vie to replace them, had offered me abundant scenarios on which to focus my anxieties. They drilled me on the importance of intentional movement and calculated nutrition, on the dangers of deli meats and cat litter, the risks and benefits of amniocentesis. But now my prenatal helpmeets had little to say. When I typed \u201cbirth defect\u201d and \u201cfetal abnormality\u201d into my pregnancy app, it replied: \u201cPlease try searching for something else.\u201d The last section of the fourth edition of \u201cWhat to Expect When You\u2019re Expecting\u201d is titled \u201cThe Complicated Pregnancy,\u201d and when I flipped to its end, I found that it did not discuss this syndrome or any other, though it did acknowledge how important it was not to discuss syndromes. \u201cMost women sail through pregnancy and childbirth without any complications,\u201d it says. A reader with a \u201cproblem-free pregnancy\u201d was told to \u201csave yourself some unneeded worry\u201d by closing her book now. My pregnancy was the idea from which other pregnant women needed to be spared.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and\u00a0log into\u00a0your Times account, or\u00a0subscribe\u00a0for all of The Times.Thank you for your patience while we verify access.Already a subscriber?\u00a0Log in.Want all of The Times?\u00a0Subscribe.<\/p>\n","protected":false},"author":1,"featured_media":26395,"comment_status":"close","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[],"class_list":["post-26393","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health"],"_links":{"self":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/26393","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=26393"}],"version-history":[{"count":2,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/26393\/revisions"}],"predecessor-version":[{"id":26396,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/26393\/revisions\/26396"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/media\/26395"}],"wp:attachment":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26393"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26393"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26393"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}