Mwana wako anenge akakura zvishoma pane vamwe vacheche here paanozvarwa? Kana izvozvo zvikaitika, ungafara, asi ungangoda kuziva, pamwe kutotya, uchizvibvunza kuti, "Sei mwana wangu akakura kudaro?" Kazhinji, izvi zvinokonzerwa nekuti wakazvarwa nemwana murefu, ane hutano. Zvisinei, kashoma, izvi zvinogona kukonzerwa nechirwere chemajini chisingawanzoitiki. Nhasi, tiri kutaura nezvechimwe chirwere chakadai, Beckwith-Wiedemann Syndrome (BWS) . Usatya kunzwa zita iri. Kana uchiziva izvi, iwe nachiremba wako munogona kushanda pamwe chete kuti mutarisire mwana wenyu zvakanaka.
Zvichitaurwa zviri nyore, chii chinonzi Beckwith-Wiedemann Syndrome (BWS)?
Ichi chirwere chemajini chisingawanzoitiki. Chinoitika ndechekuti mamwe majini anobatanidzwa mukukura kwemuviri wemwana anova anoshanda zvakanyanya. Nekuda kweizvozvo, zvimwe zvikamu zvemuviri wemwana kana muviri wese zvinokura nekukurumidza kupfuura zvakajairika.
Izvi zvinonziwo "Beckwith-Wiedemann spectrum." "Spectrum" zvinoreva se spectrum. Izvi zvinoreva kuti chirwere ichi hachibate mwana wese nenzira imwechete. Vamwe vacheche vanogona kunge vaine chimwe chete kana zviviri zvezviratidzo zvine chekuita neizvi. Vamwe vacheche vanogona kunge vaine zviratidzo zvakawanda. Saka, hapana vacheche vaviri vane chirwere ichi vakafanana.
Chinhu chakakosha ndechekuti kunyangwe pasina mushonga wechigarire wechirwere ichi, kune mishonga yakanaka kwazvo yekudzora zviratidzo uye kudzivirira matambudziko. Nekurapwa kwakakodzera, ruzhinji rwevana ava vanorarama hupenyu hwakanaka uye hwakajairika.
Ndezvipi zvinhu zvikuru zvinokonzera chirwere ichi?
Sezvatakambotaura, havasi vacheche vese vane zviratidzo izvi zvese. Asi pane zvishoma zvinowanzoonekwa. Chiremba wako achafungidzira kuti ane BWS kana akaona chimwe chezviratidzo izvi.
| Hunhu | Tsananguro iri nyore |
|---|---|
| Yakakura kupfuura yakajairika (Macrosomia) | Pakuzvarwa, huremu hwavo nekukura kwavo zvakakwirira zvakanyanya kupfuura zvevana vadiki. Vakareba kupfuura vamwe vana vezera rimwe chete. Zvisinei, kukura uku nekukurumidza kunowanzo derera pavanosvika makore masere, uye vanodzokera pakureba kwavo kwakajairika pavanenge vakura. |
| Rurimi rukuru (Macroglossia) | Rurimi rwakakura kupfuura zvakajairika. Izvi zvinogona kuita kuti zviomere mwana kuyamwa uye kutaura gare gare. Dzimwe nguva, matambudziko ekufema anogonawo kuitika. |
| Matambudziko emadziro edumbu (Omphalocele / Umbilical Hernia) | Omphalocele: Dambudziko apo ura hwemwana, seura, hunobuda nepaguvhu uye hunofukidzwa neganda rakatetepa pane kuva mukati medumbu. Umbilical Hernia: Kubuda kwenyama yemudumbu nepaguvhu. Izvi zvinogona kugadziriswa nekuvhiyiwa. |
| Kukura kwerutivi rumwe rwemuviri (Hemihyperplasia) | Rutivi rumwe rwemuviri (semuenzaniso, rutivi rwerudyi) runokura kupfuura rumwe rutivi (rutivi rweruboshwe). Izvi zvinogona kuganhurirwa kurutivi rwese kana ruoko rumwe chete kana gumbo. |
| Kuderera kweshuga muropa (Hypoglycemia) mumwana achangoberekwa | Mumazuva ekutanga kana mavhiki mushure mekuzvarwa, huwandu hweshuga muropa remwana hunogona kudzikira zvine njodzi. Kutarisira izvi zvakanaka kwakakosha pakukura kwehuropi. |
| Zvimwe zvinhu | Chiropa chakakura (hepatomegaly), kusashanda zvakanaka kweitsvo, uye mavanga madiki kana kuti makwinya munzeve zvinogona kuonekwa. |
Tinofanira kutya njodzi yekenza here?
Iyi ndiyo nyaya inonyanya kutyisa vabereki kana zvasvika paBWS. Ehe, vana vane BWS vari panjodzi huru yekubatwa nekenza yevana (kunyanya bundu reWilms, kenza yeitsvo, uye hepatoblastoma, kenza yechiropa) kupfuura vamwe vana.
Asi, tinofanira kunzwisisa zvinhu zvishoma zvakajeka pano.
1. Kunyangwe njodzi yacho yakakura, zvese zvichiri pasi. Njodzi iyi inokanganisa vana vanosvika 7-8 pavana 100 vane BWS.
2. Njodzi iyi inonyanya kuitika mumakore masere ekutanga ehupenyu. Mushure meizvozvo, njodzi yacho inoderera zvakanyanya.
3. Chinhu chinonyanya kukosha - kugara uchiongororwa nachiremba!Nekuti vanachiremba vanoziva nezvenjodzi iyi, vacheche vese vane BWS vanoongororwa nguva nenguva. Kazhinji, kuongororwa kwemudumbu neultrasound uye kuongororwa ropa (AFP test) zvinoitwa mwedzi mitatu yega yega.
Chinhu chikuru chekuongororwa nguva dzose ndechekuti, kana kenza ikatanga, inogona kuonekwa nekukurumidza. Zvadaro , mikana yekuporeswa zvakakwana nekurapwa yakakura kwazvo. Saka, chinhu chakakosha ndechekusatya izvi zvisina kufanira, asi kuita bvunzo nenguva zvichienderana nemirairo yachiremba.
Sei izvi zvichiitika? Ndezvipi zvikonzero?
Chikonzero cheizvi chakaoma zvishoma. Sero rega rega mumuviri wedu rine chimwe chinhu chinonzi machromosome. Aya akafanana nemabhuku emirairo yekuvaka miviri yedu. MuBWS, pane shanduko mukushanda kwemajini akati wandei pachromosome 11 anodzora kukura.
Zvichitaurwa zviri nyore, majini "anodzora" kukura anova akanyarara zvishoma, uye majini "anokurudzira" kukura anova anoshanda zvakanyanya. Izvi zvinonzi genomic imprinting .
- Izvi zvinowanzoitika netsaona: vana vanosvika 85% vane BWS havana nhoroondo yemhuri yechirwere ichi. Izvi zvinoreva kuti shanduko iyi yemajini inoitika netsaona, zvisina tsarukano.
- Kashoma kuwana nhaka: Chikamu chidiki, chingangoita 10-15%, chinogona kuwana shanduko yemajini ine chekuita nechirwere ichi kubva kune mumwe wevabereki vavo.
- Chinobatanidza neART: Tsvagiridzo yakaratidza kuti vana vanobatwa nemuviri kuburikidza nehunyanzvi hwekubereka (ART), hwakadai seIVF (In Vitro Fertilization) , vane njodzi yakawedzera zvishoma yekuva nezvirwere zvakaita seBWS. Zvisinei, tsvagiridzo pamusoro pechinobatanidza ichi ichiri kuenderera mberi.
Vanachiremba vanoongorora sei izvi? (Kuongororwa)
BWS inogona kuongororwa mwana asati aberekwa kana kuti mushure mekunge aberekwa.
Kuongorora Kuberekwa Kwemwana
Panguva yekuongorora ultrasound panguva yekuzvitakura, chiremba anogona kufungidzira BWS kana akaona zvinotevera:
- Mwana mukuru kupfuura zvakajairika.
- Kuwedzera kwemvura yeamniotic yakakomberedza mwana (polyhydramnios)
- Kuwedzera kweplacenta
- Kukura kweitsvo (nephromegaly)
- Dambudziko remadziro edumbu (omphalocele)
Kana ukaona zviratidzo izvi, chiremba wako anogona kusimbisa chirwere ichi nekuita bvunzo dzemajini, dzakadai seamniocentesis (amniotic fluid testing).
Mushure mekunge mwana azvarwa (Postnatal Diagnosis)
Mushure mekunge mwana azvarwa, chiremba achaongorora mwana uye otsvaga zviratidzo zvemuviri zvatakakurukura kare (rurimi rukuru, kukura kwerumwe rutivi rwemuviri, nezvimwewo). Kana paine kusava nechokwadi, ropa remwana rinogona kutorwa uye kuongororwa kwemajini kwakakosha kunogona kuitwa kuti mwana aone kana aine BWS uye kuti chii chinokonzera.
Ndezvipi kurapa? (Kurapa)
Nekuti BWS inogona kukanganisa nhengo dzakasiyana dzemuviri, mwana haarapwe nachiremba mumwe chete. Chikwata chenyanzvi, kusanganisira chiremba wevana, vanachiremba vekuvhiya, uye vanachiremba vekutaura, ndivo vanochengeta mwana.
Kurapwa kunoitwa zvichienderana nezviratidzo zvemwana.
| Dambudziko | Kurapwa uye manejimendi |
|---|---|
| Shuga shoma muropa (Hypoglycemia) | Kupa glucose (shuga munyu) kuburikidza netsinga, kupa mukaka kakawanda, uye dzimwe nguva kupa mishonga. Izvi zvinorapwa zvakanaka muchipatara. |
| Rurimi rukuru (Macroglossia) | Kushandisa mazamu emwana akanongedzerwa pakuyamwisa, kurapa kutaura, kushandisa muchina weCPAP kana paine matambudziko ekufema panguva yekurara. Vamwe vana vangangoda kuvhiyiwa kuderedza rurimi. |
| Matambudziko emadziro edumbu (Omphalocele) | Mwana achangoberekwa kana kuti nguva pfupi yadarika, nhengo dzakabuda dzinodzoserwa mudumbu nekuvhiyiwa uye madziro edumbu anovharwa. |
| Kukura kwerutivi rumwe rwemuviri (Hemihyperplasia) | Kana paine musiyano pakureba kwemakumbo, zvinogona kugadziriswa nekushandisa shangu dzakakosha (orthotics). Chiremba anogara achitarisa kukura uku. |
| Njodzi yekenza | Kusvika pazera remakore masere, kuongororwa kwemudumbu neropa (AFP) zvinoitwa mwedzi mitatu yega yega. |
Mwana wacho achava neramangwana rakaita sei? (Kufungidzira)
Uyu ungave mubvunzo mukuru uri mupfungwa dzako. Kunyangwe BWS iri dambudziko rakaoma, ruzhinji rwevana vane chirwere ichi vanorarama hupenyu hwakanaka, hunofadza, uye hwakajairika.
Pane zvinhu zvakawanda zvinosarudza ramangwana remwana:
- Ndezvipi zviratidzo zvine mwana uye zvakakomba sei?
- Kukurumidza kwakaitwa kuongororwa kwechirwere.
- Kana kurapwa nekuongororwa kwegomarara zvichiitwa nenguva.
Kana chirwere chikaonekwa nekukurumidza, chikapihwa kurapwa kwakakodzera, uye chikaramba chiri pasi pekutarisirwa nachiremba nguva dzose, mwana anogona kutarisira mhedzisiro yakanaka kwazvo.
Kana ukaona kuti mwana wako ane BWS, unogona kunzwa kushamisika, kusuruvara, uye kutya. Zvakajairika. Ungave nemibvunzo yakawanda. Taura nachiremba wako nezveizvi zvese. Iye achakwanisa kukupa kunzwisisa kwakanakisisa kwemamiriro emwana wako chaiwo. Yeuka, hausi wega. Kune timu yakakura yevanachiremba vanogona kukubatsira. Pamwe chete, munogona kugadzira nzvimbo yakanakisa yekuti mwana wenyu akure achifara uye aine hutano.
Mharidzo Yekuenda Nayo Kumba
- Beckwith-Wiedemann Syndrome (BWS) chirwere chisingawanzoitiki chinokanganisa kukura kwemwana. Hachibate vana vese nenzira imwechete.
- Zvinhu zvikuru zvinosanganisira kukura kupfuura zvakajairika, rurimi rwakakura, matambudziko emadziro edumbu, uye kukura kwerutivi rumwe rwemuviri.
- Vana vane BWS vari panjodzi yakawedzera zvishoma yekubatwa negomarara remhando dzakasiyana panguva yehudiki, asi kuongororwa nguva dzose kunogona kuvaona nekukurumidza uye kuvarapa zvachose.
- Kunyange hazvo pasina mushonga wechigarire wechirwere ichi, kune mishonga inoshanda zvikuru yematambudziko anomuka.
- Kana vana vazhinji vane BWS vachirapwa zvakanaka uye vachitarisirwa zvakanaka, vanorarama hupenyu hwakanaka, uye hwakazara. Zvakakosha kushanda pamwe chete nachiremba wako.
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