He raruraru whānau mai te taurakira o te pēpi? Me kōrero tātou mō te myelomeningocele!

Āe, he mea whakamiharo te whakaaro ki tāu tamaiti iti i roto i tō puku! Engari i ētahi wā, ka puta mai ā tātou tamariki ki tēnei ao me ngā raruraru hauora ohorere. I tēnei rā, ka kōrero tātou mō tētahi hapa whānau uaua e puta ana i te wā e whanake ana te taurakira, te taurakira rānei, i te wā e noho tonu ana te pēpi i roto i te kōpū. Ka kiia tēnei ko te myelomeningocele. Kua rongo pea koe i tēnei ko te "Open Spina Bifida". He āhuatanga tēnei e kore ai e kati tika te taurakira, te awa tuaiwi rānei o te pēpi.

He aha tonu te myelomeningocele?

He whakarāpopototanga noa iho, ko te myelomeningocele he hapa whānau e kore ai e kati katoa te tuaiwi me te awa tuaiwi o tō pēpi i mua i te whānautanga, i roto i te kōpū. He momo hapa ngongo io (NTD) tēnei. Tērā pea he uaua ki a koe te kī i tēnei ingoa, tika? E kīia ana ko 'my-e-lo-men-in-go-ceil'.

Ka puta te myelomeningocele i roto i ngā wiki tuatahi e whā o te haputanga. Koinei te wā ka kore e kati tika te ngongo io o te pēpi, ka puta mai he pēke wai-kī tonu i te tuara o te pēpi. Ina koa, kei roto i te pēke:

• Wāhanga o tō rātou taurakira
• Meninges - he kiko e hipoki ana i tō rātou taurakira
• Ngā io
• He wai nui te wai cerebrospinal (CSF) e kitea ana i roto i te roro me te taurakira.

Ka taea e te myelomeningocele te puta ki ngā wāhi katoa o te tuaiwi o te pēpi, engari ko te nuinga o te wā ka kitea i te tuara o raro (ngā rohe lumbar me sacral) , arā, i te rohe hope.

Ko te mea pouri, kua pakaru te taurakira me ngā io i roto i te pēke. Ko te tikanga ka ngoikore, ka ngaro rānei te rongo i ngā wāhanga tinana i raro i te pēke . I ētahi wā, ka pakaru te pēke. Ka puta pea tēnei nā ngā nekehanga noa o te pēpi i a ia e noho ana i roto i te kōpū, i te whānautanga rānei.

Ko te Myelomeningocele te momo tino kino o te spina bifida, ā, ka taea e ia te whakararu i ngā hauātanga ngawari ki te kino. Hei tauira, te ngoikore o te uaua, te ngaronga o te mana whakahaere o te pūkahukahu, o te puku rānei, me/ranei te pararutiki . Heoi, ko ngā pēpi e pāngia ana e tēnei mate i raro iho i te tuaiwi he iti ake ngā tohu i ngā pēpi e pāngia ana e tēnei mate i runga ake i te tuaiwi.

He aha te hapa o te ngongo io?

Ko ngā Hapa Ngongo Io (NTD) he hapa whānau (ngā āhuatanga whānau) o te roro, te tuaiwi, te taurakira rānei. He maha ngā wā ka puta i roto i te marama tuatahi o te hapūtanga – i ētahi wā i mua i te mōhio kei te hapū koe. Ko ngā momo matua e rua o ngā hapa ngongo io ko te spina bifida me te anencephaly.

Koinei te mea e tupu ana i te nuinga o te wā: I te marama tuatahi o te hapūtanga, ka honoa ngā taha e rua o te tuaiwi o te pēpi hei hanga i tētahi hipoki tiaki mō te tuaiwi, ngā io tuaiwi, me ngā meninges (te kiko e hipoki ana i te tuaiwi). I tēnei wā, ko te roro me te tuaiwi e tipu haere ana o te pēpi ka kiia ko te ngongo io.

Nō reira, ki te mea he hapa, he raruraru rānei kei roto i te hanganga o tēnei ngongo io, ka kiia he hapa ngongo io.

He aha te rerekētanga i waenga i te Spina Bifida me te Myelomeningocele?

Ko te 'Spina Bifida' e pā ana ki tētahi hapa whānau kāore e kati katoa te ngongo io e karapoti ana i te tuaiwi.

Ka pā te Spina Bifida ki ngā wāhi katoa o te tuaiwi o te pēpi, e ai ki te kōrero i mua ake nei, mena kāore te ngongo io e kati katoa i roto i te kōpū. Ina tupu tēnei, kāore te taurakira e tiaki ana i te taurakira e kati tika. Ka pā kino pea tēnei ki te taurakira me ngā io o te pēpi.

Ko te Myelomeningocele he momo spina bifida – ā, ko te mea tino kino rawa atu. He pēke kī tonu i te wai e puta mai ana i te tuara o te pēpi, kei roto ko tētahi wāhanga o te taurakira me ngā io. Ko ētahi atu momo spina bifida ko te meningocele me te spina bifida occulta.

He aha te rerekētanga i waenga i te Meningocele me te Myelomeningocele?

He momo spina bifida te myelomeningocele me te meningocele, engari he iti noa te rerekētanga.

Ko te Meningocele he āhuatanga e puta mai ai he pēke kī tonu i te wai i roto i te pūaha i te tuara o te pēpi, engari kāore i roto i te pēke te taurakira o te pēpi . He iti noa iho te kino, kāore rānei he kino o ngā io.

Engari i roto i te myelomeningocele , kei roto i taua pēke tetahi wāhanga o te taurakira me ngā io, ā, kua pakaru . Koinā te mea e kino rawa atu ai.

Ko wai ka pāngia e te Myelomeningocele?

Ka pā te Myelomeningocele ki tētahi pēpi. Ahakoa kāore i te tino mārama ngā kaipūtaiao he aha te take, kua tautuhia e rātou ētahi āhuatanga ira, taiao, me te kai e whakanui ana i te tūponotanga o te pēpi ki te whakawhanake i te mate.

He pēhea te noa o tēnei āhuatanga?

Ko te Myelomeningocele he mate e puta ana i roto i te pūnaha io matua.Ko te mate whānautanga tino noa (he hapa whānau). Hei tauira, e pā ana tēnei mate ki te 1,645 ngā pēpi e whānau ana i ia tau i te Hononga o Amerika. Ka whānau mai hoki ngā tamariki me tēnei mate i Sri Lanka.

He aha ngā tohu o te Myelomeningocele?

He pēpi e pangia ana e te myelomeningocele , he pēke wai kei roto e rere ana i te tuaiwi mai i waenganui o te tuara . He maha ngā wā ka kitea e ngā tākuta te mate i te wā e hapu ana mā te matawai ultrasound.

Tērā pea he hapa whānau anō tō te pēpi e pāngia ana e te myelomeningocele. Tata ki te 8 i roto i te 10 o ngā pēpi e pāngia ana e tēnei mate, he mate anō hoki e kiia nei ko te hydrocephalus, he putunga wai kei roto i te roro .

Ko ētahi atu raruraru o te taurakira, o te pūnaha musculoskeletal rānei e pā ana ki te myelomeningocele ko:

• Syringomyelia (he whēwhe kī tonu i te wai i roto i te taurakira)
• Te nekehanga o te hope

He aha ngā take o te Myelomeningocele?

Kāore anō kia mōhiotia e ngā tākuta me ngā kaipūtaiao te tino pūtake o te myelomeningocele, engari e whakapono ana rātou he mate uaua tēnei i puta mai i te huinga o ngā āhuatanga ira, kai, me te taiao .

Ina koa, ko te iti o te waikawa folic i roto i te tinana o te whaea i mua atu me te wā e hapu ana kua whakaatuhia he take nui ki te puta mai o tēnei momo koha whānau. He mea nui te waikawa folic (e mōhiotia ana ko te folate) mō te whanaketanga o te roro me te taurakira o te pēpi.

Me pēhea te tātaritanga o te Myelomeningocele i mua i te whānautanga o te pēpi?

He maha ngā wā (engari kāore i te katoa) ka taea e ngā tākuta te tātaritanga i te myelomeningocele i roto i te tamaiti i te wā e hapu ana. Ka whakamahia e rātou ēnei whakamātautau:

• Whakamātautau toto: Ka whakahau tō tākuta i tētahi whakamātautau toto i waenga i te 16 me te 18 wiki o te hapūtanga hei ine i tētahi matū e kiia nei ko te alpha-fetoprotein (AFP). Tata ki te 75% ki te 80% o ngā wāhine hapū e whānau ana i tētahi pēpi me te spina bifida he nui ake ō rātou taumata AFP i te mea noa. Mena he teitei anō hoki tō taumata, ka whakahau tō tākuta i ētahi atu whakamātautau, pērā i te matawai ultrasound, hei tirotiro anō i te pēpi.
• Te tirotiro i te kōpū i mua i te whānautanga: Ko te tirotiro i te kōpū i te wā e hapu ana te huarahi tino tika ki te tautuhi i te myelomeningocele. Ko te tikanga, ka tūtohu ngā tākuta kia tirohia ngā tirotiro i te toru marama tuatahi (wiki 11-14) me te toru marama tuarua (wiki 18-22). Ka taea e te tirotiro i te toru marama tuarua te tautuhi tika i te mate.
• Whakamātautau amniocentesis:Mena ka whakaūtia te myelomeningocele e te matawai ultrasound fetal, ka tūtohu pea tō tākuta i tētahi whakamātautau amniocentesis. Ka mahia tēnei hei tirotiro i ngā āhuatanga ira onge e pā ana ki te myelomeningocele. Ko te tikanga o tēnei, ka whakamahia e te tākuta he ngira hei tango tauira wai mai i te pēke amniotic e karapoti ana i te tamaiti. He maha ngā tūponotanga o tēnei whakamātautau, nō reira he mea nui kia kōrerohia tēnei ki tō tākuta.

Ki te kore e kitea i te wā e hapu ana, ka tātaritatia te myelomeningocele i muri i te whānautanga o te pēpi mā te whakamahi i ngā whakamātautau whakaahua pērā i te matawai MRI (Magnetic Resonance Imaging) me te matawai CT (Computed Tomography).

He aha ngā maimoatanga mō te Myelomeningocele?

Ko te maimoatanga noa mō te myelomeningocele ko te pokanga hei kati i te pūaha i te taurakira o te pēpi .

Ka taea e ngā tākuta te mahi i tēnei pokanga i mua i te whānautanga o te pēpi (pokanga fetal) i muri tata mai rānei i te whānautanga (pokanga postnatal) .

Nā te mea he maha ngā wā ka pāngia ngā pēpi e te myelomeningocele e te hydrocephalus (he wai e pupū ake ana i te roro), ka hiahiatia pea he ventriculoperitoneal (VP) shunt hei tango i te wai tāpiri mai i te roro o te pēpi.

He maha ngā tamariki e hiahia ana ki te rongoā mō te wā roa hei whakahaere i ngā raruraru i puta mai i te kino o te taurakira me ngā io. Ko ngā maimoatanga noa ko ngā paturopi hei ārai i ngā mate pēnei i te meningitis (ngā mate roro) me ngā mate mimi (UTI) me te whakaora tinana.

Te pokanga kōpū mō te myelomeningocele

He kōwhiringa te pokanga i roto i te kōpū e taea te whiriwhiri i runga i te kaha o te myelomeningocele me te hauora o te whaea hāpu. Kei te piki haere te rongonui o tēnei momo pokanga.

Ahakoa ka taea e tēnei pokanga te ārai i te kino haere o ngā tohu, kāore e taea te whakatika i ngā kino kua pā ki te taurakira, ki ngā io rānei .

He mea nui: He maha ngā raruraru e pā ana ki ēnei pokanga i roto i te kōpū, pērā i te nui ake o te mōrearea o te whānautanga o mua me te tangohanga o te kōpū.

Te pokanga muri i te whānautanga mō te myelomeningocele

Mena kāore i pokangahia tō pēpi i roto i te kōpū hei whakatika i te spina bifida, me mahi wawe tonu te pokanga i muri i te whānautanga – ko te tumanako i roto i ngā haora 48 tuatahi o te whānautanga – hei whakaiti i te tūponotanga o te mate.

Ko ēhea ngā tākuta me toro atu ki taku tamaiti me te myelomeningocele?

He maha ngā tamariki e pangia ana e te myelomeningocele e whai hua ana i te tautoko a tētahi tīma maha-mātauranga hei whakarite i tō rātou manaaki me te whakahaere. Ko ētahi o ngā tohunga ka whai wāhi pea ki te manaaki i tāu tamaiti ko:

• Tohunga roro
• Taote Pokanga-roro
• Taote pokanga pēpi
• Tohunga Uro
• Tohunga wheua
• Tākuta kiri
• Kaiwhakaora tinana

He aha ngā āhuatanga mōrearea mō te myelomeningocele?

Engari, kāore e taea te ārai katoa i ngā mate whānau pēnei i te myelomeningocele – ka taea anake te whakaiti i te mōrearea . I te nuinga o te wā, ka puta noa te mate i ētahi wā. Engari kua tautuhia e ngā kaipūtaiao ētahi āhuatanga mōrearea e pā ana ki te mate. Ko ēnei:

• Te korenga o te waikawa folic (folate): He mea nui te waikawa folic, te momo tūturu o te huaora B9, mō te whanaketanga hauora o te kukune. Mā te korenga o te waikawa folic ka nui ake te mōrearea o te spina bifida me ētahi atu mate ngongo io (NTD). Mena kei te hapu koe, kei te whakaaro rānei koe ki te hapu, he mea nui kia tangohia ngā huaora prenatal kia mōhio ai kei te whiwhi koe i te waikawa folic (folic acid) me ētahi atu matūkai e hiahiatia ana e koe mō te haputanga hauora.
• Hītori whānau mō ngā hapa ngongo io: Ko te hunga kua whānau mai he tamaiti kotahi me te hapa ngongo io, tata ki te 3% te pikinga ake o te mōrearea ki te whānau mai i tētahi atu tamaiti me te hapa. Waihoki, ko ngā wāhine kua pāngia e te hapa ngongo io (NTD) he nui ake te tūponotanga ki te whānau mai i te tamaiti me te myelomeningocele i te hunga kāore i pāngia e te mate. Heoi, ko te nuinga o ngā pēpi me te myelomeningocele ka whānau mai i ngā mātua kāore he hītori whānau mō te mate.
• Ngā rongoā ārai-hōhā: Kua kitea ko ētahi rongoā ārai-hōhā e hono ana ki te pikinga ake o te mōrearea o ngā hapa ngongo io ina tangohia i te wā e hapu ana.
• Mate huka: Ko ngā wāhine hapu e kore e taea te whakahaere i te mate huka, he nui ake te mōrearea ki te whānau tamariki me te myelomeningocele.
• Momona: Ko ngā wāhine momona i mua i te hapūtanga he nui ake te mōrearea ki te whānau tamariki me te koha ngongo io, tae atu ki te myelomeningocele.
• Te pikinga o te pāmahana tinana:Kua kitea ko te pikinga o te pāmahana tinana matua (hyperthermia) i ngā wiki tōmua o te hapūtanga, ahakoa nā te kirika tonu, nā te whakamahinga rānei o te sauna, te kaukau wera rānei, ka paku whakanui ake i te mōrearea o te myelomeningocele.

Kia maumahara, ehara i te he tō whānautanga o tētahi pēpi me te myelomeningocele. Ko te hunga katoa e pāngia ana e te tau whānau tamariki ka pāngia e te hapa whānau.

He aha te āhua o te mate myelomeningocele?

Kāore e rua ngā tāngata e pāngia ana e te myelomeningocele e te pānga ōrite. Ko te matapae mō tēnei mate e whakawhirinaki ana ki ētahi āhuatanga. Ko ētahi o ēnei ko:

• Te āhua taketake o ō rātou tuaiwi me ngā io.
• Te teitei, te iti rānei o te pūaha i te tuaiwi.
• Kua tuwhera, kua kati rānei taua putea?
• Ahakoa i pokangahia rātou i mua atu i te whānautanga, i muri rānei i te whānautanga.

Ko te auau mate mō te hunga whai spina bifida he tata ki te 1% ia tau i waenga i te 5 me te 30 tau te pakeke. Ko te teitei ake o te whara i te taurakira, ko te nui ake o te mōrearea o ngā raruraru me te mate.

Ka pā nui ngā pānga taha me ngā raruraru o te myelomeningocele ki te kounga o te oranga. Ko te hunga whai mate pēnei ka nui ake te tūponotanga ka pāngia e te pouri, te manukanuka, me ngā whanonga mōrearea .

He aha ngā raruraru o te myelomeningocele?

Ko ngā raruraru e pā ana ki te myelomeningocele ko:

• Te pararutiki me te/te ngaronga rānei o te kare ā-roto i ngā wāhanga tinana i raro i te wāhi o te pēke kī tonu i te wai (whara).
• Te hekenga o te nekehanga nā te ngoikore o te uaua.
• Ngā raruraru wheua e pā ana ki te pararutiki , hei tauira, te scoliosis (te piko o te tuaiwi), te whakaheke i te uaua o te hononga, me te nekenga o te hope.
• Te ngaronga o te mana whakahaere i te pūkahukahu me/ranei te puku.
• Te putanga pinepine mai o ngā mate mimi (UTI).
• Te mate kiriuhi roro (meningitis).
• Mate pāwera ki te rapa.
• Ngā rerekētanga ako, ngā whakaroa whanaketanga rānei (ngā ngoikoretanga hinengaro).
• Mate haurangi `(Ngā hopukanga)`.

Me pēhea taku tiaki i taku pēpi me te myelomeningocele?

Ko te mea nui kia maumahara, kāore he tangata e rua e pāngia ana e te myelomeningocele e te pānga kotahi. Kāore he huarahi hei tino mōhio me pēhea te pānga o tō pēpi. Ko te mea pai rawa atu ka taea e koe ko te kōrero ki tētahi tākuta e tohunga ana ki te rangahau me te rongoā i te spina bifida me te myelomeningocele.

I a tāu tamaiti e tipu ake ana, ka āwhina tētahi rōpū tākuta motuhake ki te tiaki i ōna hiahia.Ka taea e ia te whai hua.

Āhea ahau me kōrero ki te tākuta o taku tamaiti mō te myelomeningocele?

Mena i whānau mai tāu tamaiti me te myelomeningocele, me toro atu ia ki tana tākuta – ki tana tīma tākuta rānei – i ia wā, i ia wā, puta noa i tōna oranga.

He mea tino nui rawa atu kia kōrero koe ki te tākuta o tāu tamaiti mō ēnei take:

• Mena kua tomuri rawa tāu tamaiti ki te tīmata hikoi, kua tomuri rawa rānei ki te tīmata ngokingoki.
• Mena kei tō tamaiti ngā tohu o te hydrocephalus, hei tauira, he ira ngohengohe e pupuhi ana i te rae, he riri, he hiamoe nui, he uaua ki te whāngai.
• Mena kei tāu tamaiti ngā tohu o te meningitis, tera pea ka pāngia ia e te kirika, te kaki maro, te riri, me te tangi nui.

He aha ngā pātai me pātai atu ki taku tākuta mō te myelomeningocele?

Mena kei te whakapae tō tākuta he myelomeningocele tēnei, he pai pea te pātai atu i ēnei pātai ki a koe:

• He aha taku e taea ai kia noho hauora tonu ahau i te toenga o taku hapūtanga?
• Ka taea e koe te tūtohu i ngā tākuta me ngā tohunga e tohunga ana ki te Spina Bifida me te Myelomeningocele?
• He aha ngā kōwhiringa maimoatanga mō te myelomeningocele?
• He aha ngā mōrearea me ngā painga o te pokanga whakatikatika i te kukune me te pokanga whakatikatika i muri i te whānautanga?
• Kei te tūpono ahau ki te whānau anō he tamaiti māku me te myelomeningocele?
• He kōrero āu mō ngā rōpū tautoko mō te hunga whai myelomeningocele me ngā mātua o aua tamariki?

He mea taumaha te kitenga he mate kino tō pēpi. Engari kia maumahara ehara i te mea ko koe anake – he maha ngā rauemi hei āwhina i a koe me tō whānau. He mea nui kia kōrero koe ki tētahi tākuta e mōhio ana ki te myelomeningocele kia nui ake ai ōna pānga ki tō pēpi, me pēhea hoki te whakarite.

He Karere Mauria ki te Kāinga mai i a Mātou

He tino uaua te mate Myelomeningocele i te whānautanga. Engari mā te tiaki hauora tika, te tautoko, me te aroha, ka taea e ēnei tamariki te ora pai . He mea nui kia mōhio ki tēnei āhuatanga i roto i te kukune me te rapu maimoatanga wawe. Mā te mahi i ngā mahi pēnei i te whiwhi waikawa folic e nui ana ka taea hoki te whakaiti i te mōrearea o tēnei āhuatanga. Mena he pātai anō āu mō tēnei, kaua e mangere ki te kōrero ki tō tākuta.

` Myelomeningocele, spina bifida, ngā hapa whānau, ngā hapa ngongo io, tuaiwi, hauora pēpi, haputanga