Kurera mwana nehutano hwakanaka hwehutano hakusi nyore. Hazvina mhosva kuti kuremara kwemwana wako kana kwakanyanyisa kunogona kuonekwa sei kunze kwenyika, hazvina mubvunzo kuti hauna zvawakanga uchifunga mupfungwa dzako pawakanga uchiona kuti wakanga uine mwana.
Kana iwe zvino uzviwana wava kutarisira mwana ane spina bifida, iwe unogona kunge uchinetseka uye uchinetseka. Iwe unogona kunge uzerewo nerudo uye chido chikuru chekuita zvose zvaunogona kupa mwana wako hupenyu hwakanakisisa hunoita.
Kunyange zvazvo hupenyu huri kuenda mberi hungave huri zvaunotarisira, unogona kuzvibata. Nekutsigirwa kwakarurama, ruzivo, uye kutungamirirwa, iwe nemwana wako zvichida kurarama hupenyu huri nani pane iwe unogona kufunga iwe pawakagamuchira kurapwa.
Kutanga, pane zvimwe zvido zvekurapa zvinokosha zvaunofanira kuziva uye zvakagadzirirwa. Kuziva zvaunotarisira uye kuti ungazviita sei kuchaita kuti zvinhu zvive nyore munguva refu.
Spina Bifida Basics
Kana wakasvika peji ino, iwe unogona kunge uchiziva zvishoma nezve spina bifida. Nenguva pfupi, kune marudzi matatu epina bifida.
- Spina bifida occulta - Ichi ndicho chimiro chinyoro chepina bifida. Iko kune gaka mumutsana, asi hapana kuvhura kana sac kumushure.
- Meningocele - Izvi zvinoitika kana pane chikwama chemvura mumvura kumashure, asi rwonzi rwomukona harusi mubhagi. Iko kunowanzoita zvishoma kumusana wehutano hwemutsara nemhando iyi ye spina bifida.
- Myelomeningocele - Iyi ndiyo inonyanya kuipa yepina bifida. Iko girasi yemvura yakasvibiswa pamwero wepakati mukati memumumvuri. Mutsipa wepelinhawo unomanikidzwa mukati memvura yakasviba pamusana wemwana, uye kunogona kuve nehutano hwakaipa hwekushaya.
Matambudziko Emishonga Anobatana naSpina Bifida
Bowel / Bladder Zvinoshungurudza
Vazhinji vana vane spina bifida vane kukuvadza mumisungo inotungamirira kumarara uye mumatumbo. Izvi zvinokonzera kushungurudzika kunoita kuti mwana wako aende uye arambe achifamba. Kunyangwe kufunga kwekuchera mwana wako kunogona kutyisa pakutanga, iva nechokwadi chokuti zviuru zvevabereki vanoita izvi kubudirira zuva rega rega. Mukoti wemwana wako kana chiremba achakuratidza kuti ungaita sei izvi uye uone kuti iwe unofara nazvo usati watumira iwe kumba.
Ichagara ichikosha kuva nechokwadi chokuti mwana wako ari kuwana fibhi yakakwana muzvokudya zvavo kuitira kuti zvigaro zvive nyore. Kuwanda kwekupindira kunofanirwa kubatsira nehutachiona hunoenderana nekuoma kwehutano hwemhutu. Vamwe vana vanogona kuva nekufamba kwebasa ivo pachavo apo vamwe vanoda zvidhori kuti vaone kuti vanogona kuenda.
Orthopedic Concerns
Vana vane spina bifida vanogona kuva nehutano hwakasiyana-siyana uye hwepfupa. Imwe nyanzvi yemapfupa ndiyo chikamu chinokosha chechikwata chako chekurapa. Kuvimbisa kuti wakaziva chero nyaya dzakakosha dzakadai seklubfoot, zvipikiso zvepelinha, uye kuputika kwechiputi zvakakosha kuti zvikwanise kutarisirwa kana kugadziriswa. Kune zvakawanda zvinopindira zvinogona kubatsira nemamiriro aya.
Chiremba wemwana wako angangodaro anorayira chirwere chepanyama kuti ave nechokwadi chokuti iye achava nezvakawanda zvinoshanda sezvinobvira mumuviri wake wepasi. Kana iwe usingazivi zvakanyanya spina bifida, unogona kutenda kuti munhu wose ane chigaro chevasimbe. Zvisinei, izvozvo handizvo. Vana vakawanda nevakuru vane spina bifida vanogona kufamba kana kusangana vasina gumbo revasimba.
Dzimwe nguva mapepa anodiwa kuti abatsire mishonga mumumucheto wakadzika kugadzikana. Tema yehutano hwemwana wenyu ichakubatsira kuona kana zvichange zvichibatsira. Vamwe vana havagoni kushandisa midzi yavo yakaderera uye vangada kushandisa girachairi.
Vana vaduku semwedzi 18 vanogona kutanga kushandisa gumbo revasimba kana zvichionekwa zvichidikanwa uye zvakachengeteka.
Ganda Utano
Apo vana (kana kuti vanhu vakuru) vashanda kushandiswa kwechikamu chemuviri, ivo vari pangozi yakakura yekupuka kweganda. Apo pane kuenderera mberi kwechikamu pane imwe chikamu chemuviri, zviri nyore kuti ganda ritsamwiswe uye kuwedzera kukuvara kwechirwere. Izvi zvinogona kutanga kukura mune zvishoma semaawa maviri.
Zvichave zvakakosha kutarisa ganda remuwana wenyu zuva rega rega nekuda kwezviratidzo zvekumanikidzwa kana kutsamwa. Iwe unoda kutsvaga:
- Tsvuku dzakatsvaga dzisingadzoki mushure memaminitsi gumi nemashanu
- Inotyisa
- Mavara
- Cuts
- Blisters
- Burns
Kana iwe ukacherechedza chimwe chezvinhu izvi paganda remwana wako, taura naye muchengeti wehutano. Kupfeka kwakakosha kana kurapa kunogona kudiwa kubatsira ganda kuporesa.
Kana mwana wako ari kushambadzira, iva nechokwadi chokuti haasi kumukwezva tsoka / makumbo kana kuumba kupesana chero chikamu chemuviri. Izvi zvinodzokorora zvinokonzera kupesana paganda zvinogona kutungamirira kuparara kweganda nokukurumidza. Aya mavanga anogona kutapukirwa nyore nyore, saka iva nechokwadi chokuti unotsvaga kurapwa kana ukaona kuti mwana wako ari kukura rudzi urwu rwekuparara kweganda.
Kana iwe ukapinda muitiro wekuita chekucheka kweganda zvishoma zuva rega rega uye kudzidzisa mwana wako nzira dzakakodzera dzokutsinhanisa sezvaanenge akwegura zvakakwana kuti aende ari oga, hazvisi izvo zvakaoma kudzivirira kuparara kweganda.
Hydrocephalus
Inenge 80 muzana yevana vakaberekwa vane spina bifida vanewo chirwere chinonzi hydrocephalus. Mukutaura kwemashoko, inowanzozonzi "mvura muuropi," kunyange iyo isiri tsanangudzo yakakwana. Hydrocephalus iwandu hwakawandisa hwechirebrospinal fluid (CSF) yakapoteredza uropi. Vana vane hydrocephalus vanowanzovhiyiwa kuti vaise chipikirwo chinonzi ventriculoperitoneal (VP), iyo inongova pikiti inomhanya kubva mumhepo inobva muuropi kuenda kune peritoneal space mudumbu. Iyo inobvumira kushanduka kwemvura kuti ibve kure neuropi uye kupinda mudumbu iyo inopindirwa mumuviri.
Latex Precautions
Vana vazhinji vane spina bifida vane hosha dzemazuva ekupedzisira kana kuti vanoda kutora nguva yekuchengetedza kare kana nguva yekupedzisira inogona kukura chero nguva. Izvozvo zvinowanzoita kuti vanhu vawedzere kusangana nemishonga ine latex. Pamusana pekudiwa kwekuita catheterization (pamwe nemigetsi ine latex) kakawanda pazuva, zuva rega rega, vanhu vazhinji vane spina bifida vanopedzisira vaine zvirwere zvekunetseka kana kunzwisiswa kwe latex.
Kana iwe uine mwana ane spina bifida, unofanirwa kuziva nezvezviratidzo zvehutano hunoita. Nokuti inogona kukura zvishoma nezvishoma kupfuura nguva, unofanirwa kuziva zvaunofanira kutarisa.
Zviratidzo zvinowanzoenderana nehuipi zvinosanganisira:
- Itching
- Runyoro / ganda rinotsamwisa
- Kudzora uye / kana mhepo inomhanya
- Ichocho, maziso emvura
- Kukosora
- Inzwi rakanyanya
- Kugurusa kana kupfupika kwemhepo
Chirwere chakakura chinonzi allergenic chinonzi anaphylaxis chinogona kukura chero nguva. Zviratidzo zvevanaphylaxis zvinosanganisira:
- Kuoma kufema kufema
- Miromo uye rurimi rukarerekera
- Chizutu
- Kusanganiswa
- Drop in blood pressure
- Kudzora
- Slurred speech
- Kurasikirwa kwekuziva
Kana ukacherechedza zviratidzo zvehutano hwehutachiona, taura nemupiki wehutano hwemwana wako pakarepo. Kana iwe uchifunga kuti mwana wako angave ari kutarisana neanaphylactic reaction, danai 911 kana kutsvaga kurapwa kwekukurumidzira kwekukurumidza.
Surgery
Vana vane myelomeningocele-iyo yakanyanya kukura ye spina bifida-kazhinji inoda kuvhiyiwa. Mune mamwe mamiriro ezvinhu, izvi zvinogona kuitika mu utero, apo amai vachiri nepamuviri. Icho chirwere chekuvhima hachijairika, naizvozvo hachisi chokusarudzwa kwese kwese. Vamwe vana vachada kurapwa mushure mokuberekwa. Kana ukawana chirwere chepininaida, chiremba wako achakurukura nezvesarudzo dzekuvhiya zvinogona kuitika newe uye aone kuti mwana wako achadii, kana pane.
Shoko Rinobva Kunyanya
Kutarisana nekuongororwa kwemwana wepina bifida kunogona kuva kunotyisa uye kunopisa, asi hazvifaniri kunge zvakadaro. Inowanzogadzirisa mamiriro ezvinhu chero bedzi iwe uchiudzwa uye wakagadzirirwa. Zvakakosha kuyeuka kuti mwana wako ndiye mwana kutanga. Haana kurondedzerwa nekuongorora kwake kana kuti haafaniri kunge asingakwanisi kupera. Kana iwe usingafungi nenzira iyi semubereki pakutanga, zvakanaka. Zvipe iwe nguva yekutarisana, kushungurudza, kana kusvika kune zvaunofanirwa nechinjeko chinotungamirirwa nehupenyu hwako. Sezvo amai vemwana vane ruzivo rwakazvida ini, ndinoziva haisi nzira iri nyore. Nenguva isipi, neniwo ndine ruzivo rwekuziva kuti runakidze sei. Pamusoro pezvose zvakadai, ida mwana wako uye ita zvaunokwanisa kumuponesa hupenyu huri nani.
> Sources:
> Bowel / Bladder Needs & Care - spinabifidaassociation.org. http://spinabifidaassociation.org/find-support/resource-directory/bowel-and-bladder-needs-and-care/.
> CDC. Chokwadi | Spina Bifida | NCBDDD | CDC. Nzvimbo dzeDaase Control uye Kudzivirira. https://www.cdc.gov/ncbddd/spinabifida/facts.html. Yakabudiswa naOctober 17, 2016.
> Hydrocephalus Fact Sheet | National Institute of Neurological Disorders uye Stroke. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheet.
> Natural Rubber Latex Allergy - spinabifidaassociation.org. http://spinabifidaassociation.org/project/natural-rubber-latex-allergy/.
> Orthopedic Needs & Care - spinabifidaassociation.org. http://spinabifidaassociation.org/find-support/resource-directory/orthopedic-needs-and-care/.