E mōhio ana mātou ko te hiahia nui rawa atu o koutou katoa, hei whaea, kia whānau mai he pēpi hauora, he pēpi kua whānau katoa. Engari i ētahi wā, ka puta mai ngā raruraru kāore i whakaarohia e tātou. He kaupapa tino tairongo te Anencephaly ki te whakarongo. He hapa whānau tēnei e puta ana ina kore e whanake tika te roro me te angaanga o te pēpi. Kāore e taea te kī te mamae me te ohorere e pā ana ki a koe ina rongo koe mō tētahi mea pēnei. Engari he mea tino nui kia mārama koe ki tēnei mate i te tika me te ngāwari. I tēnei rā, ka kōrero tātou mō tēnei mate e kiia nei ko te Anencephaly.
He aha te Anencephaly?
He mate whānau te Anencephaly e puta mai ana i te whānautanga. I roto i tēnei āhuatanga, kāore ētahi wāhanga nui o te roro me te angaanga o te pēpi e whanake. He mate kino tēnei e pā ana ki te pūnaha io o te pēpi.
Whakaarohia, i te marama tuatahi o te hapūtanga, ka tīmata te hanganga o te roro, te angaanga, te tuaiwi, me te taurakira o te pēpi. Ka hangaia ēnei i roto i tētahi hanganga motuhake e kiia nei ko te 'ngā ngongo io'. Me kati tēnei ngongo, pērā i te reti. Mēnā he anencephaly, kāore te wāhanga o runga o tēnei ngongo io, te wāhi e hangaia ai te roro me te angaanga, e kati tika. Koia te take i kiia ai hoki ko te hapa ngongo io .
Ko te roro te kaiwhakahaere i ngā mea katoa o ō tātou oranga, māna tātou e pupuri kia ora. Nō reira, he uaua ki te tamaiti te ora me te kore ngā wāhanga matua o te roro. Nō reira, ko ngā pēpi i whānau mai me te anencephaly ka ora noa iho mō ētahi meneti, hāora, rā rānei. I te nuinga o te wā, ka mutu ēnei haputanga ki te materoto, ki te whānautanga mate rānei.
E mōhio ana mātou he tino uaua tēnei ki a koe ki te mōhio. Engari ehara tēnei i te he nāu. He raruraru tēnei e puta ana i ngā wiki tōmua o te hapūtanga, i te wā kāore pea koe e mōhio kei te hapū koe.
He momo matua o te anencephaly?
Ae, e toru ngā momo matua o te anencephaly. He tino pānga nui ēnei momo e toru ki te oranga o te tamaiti.
| Momo anencephaly | He whakamārama māmā |
|---|---|
| Meroanencephaly | I tēnei momo, kāore i te tino whanake ngā wāhanga o te take roro me te roro waenga. Tērā pea he kiri me te angaanga e kapi ana i te roro. |
| Horoanencephaly | Koinei te momo tino noa. Kāore anō kia whanake te roro. |
| Te angaanga o te angaanga | Koinei te momo tino kino. I konei, kāore anō kia tino whanake te roro, te angaanga, me te tuaiwi. |
He aha ngā tohu hei tautuhi i tēnei mate?
Ka taea te kite wawe i tēnei mate mā roto i ngā whakamātautau i te wā e hapu ana. Kei te aro nui ngā tākuta ki tēnei.
- Ngā whakamātautau toto: He tino teitei te taumata toto o te whaea o te pūmua e kiia nei ko te alpha-fetoprotein (AFP) . He whakamātautau tēnei e mahia ana i te toru marama tuarua o te hapūtanga.
- Matawai: Tērā pea he nui rawa te wai amniotic e karapoti ana i te pēpi. Ka kiia tēnei he polyhydramnios . Waihoki, ka taea e te matawai ultrasound te whakaatu mārama kua ngaro ētahi wāhanga o te angaanga me te roro o te pēpi.
- Te āhua o te pēpi: I te whānautanga, ka kite pea koe kua ngaro ētahi wāhanga o te angaanga o te pēpi, kua kitea ngā kiko o te roro, ā, he iti ake te upoko i te mea i whakaarohia.
He aha ngā kare ā-roto o te pēpi whānau hou?
He mea tino mamae tēnei mō te whaea, mō te pāpā rānei. Mō ngā pēpi i whānau mai me tēnei mate:
- Kāore he hinengaro.
- Kāore he tirohanga.
- Kāore he whakarongo.
- Kāore au e rongo ana i te mamae.
I ētahi wā, ka taea e ngā pēpi kua whanake te take o te roro te whakaatu i ētahi tauhohenga ina pāngia. Ngā mea pēnei i te manawa, te neke i ō rātou waewae. I te kitenga i ēnei mea, tera pea ka whakaaro koe kei te pā mai te pēpi ki a tātou. Engari ehara i te mea e mahia ana me te mōhio. He mea e puta aunoa ana. Nā te mea kāore ngā wāhanga nui o te roro i reira, kāore te pēpi e pā mai, e mārama rānei ki tetahi mea.
He aha ngā take me ngā āhuatanga mōrearea mō te anencephaly?
Kāore e taea te kī tika he aha te pūtake o te anencephaly, engari he maha ngā āhuatanga mōrearea kua tautuhia pea e whai wāhi ana ki tēnei.
Ko te mea nui, ehara tēnei mate i te mea tuku iho i te nuinga o te wā. Ko te tikanga ka puta noa mai, ahakoa kāore anō kia pāngia tētahi o te whānau. Heoi, ki te mea kua whānau kē koe i tētahi tamaiti me te koha ngongo io (pērā i te spina bifida), he paku teitei ake te mōrearea o tō tamaiti e whai ake nei ki te pāngia e taua mate anō. He mea tino nui kia kōrero koe ki tō tākuta mō tēnei.
| Tauwehenga mōrearea | Whakaahuatanga me ngā mea hei mahi |
|---|---|
| Te korenga o te waikawa folic | Koinei te take mōrearea matua, ā, ko te mea tino taea te ārai. Ko te waikawa folic he momo huaora B9. He mea nui kia nui te waikawa folic mai i te wā e ngana ana koe ki te hapu me ngā marama tuatahi e 3 o te hapūtanga. Tangohia te horopeta kua tohua (ko te tikanga he 400 mcg) i ia rā e ai ki te taunakitanga a tō tākuta. |
| Mate huka | Mena he mate huka kore-whakahaere tō te whaea, he mōrearea anō hoki tēnā. He mea nui kia whakahaeretia ngā taumata huka toto i mua noa atu i te hapūtanga. |
| Ētahi rongoā | Ka taea e ngā rongoā mō ngā mate haurangi, ngā migraines, me ētahi mate hinengaro (pērā i te waikawa valproic) te whakanui ake i tēnei mōrearea. Mena kei te tango koe i tētahi rongoā, kōrero ki tō tākuta mō tēnei i te wā tonu e whakaaro ana koe ki te hapu. Kaua e mutu te tango i tētahi rongoā me te kore he tohutohu a tō tākuta. |
| Te whakamahinga o ngā raau taero | Ka taea hoki e te whakamahinga o ngā raau taero pēnei i te opioids i ngā marama tuatahi e rua o te hapūtanga te whakararu i te whanaketanga o ngā koha ngongo io. |
Me pēhea te whakatau tika i tēnei mate i te wā e hapu ana?
Ina haere koe ki te whare hauora i a koe e hapū ana, ka whakahaerehia e ngā tākuta ētahi whakamātautau hei kimi i ngā hapa whānau. He āwhina nui ēnei whakamātautau ki te kimi i te anencephaly.
- Mata Tohu Whā: He whakamātautau tēnei e mahia ana ki te toto o te whaea. Ka tirohia ngā mea pēnei i ngā taumata AFP kia mōhio ai koe ki ngā hapa ngongo io me ētahi atu āhuatanga ira.
- Matawai Ultrasound: Koinei te tikanga e whakamahia whānuitia ana. Mā te matawai anomaly, e mahia ana i waenga i te 18-20 wiki, ka tirohia te angaanga, te roro, me te taurakira o te pēpi. Mena kei te kitea te anencephaly, ka taea te tautuhi mārama mā tēnei matawai. I ētahi wā ka taea te kite wawe atu, tata ki te 8-12 wiki.
- MRI Fetal (Whakaahua Āhua Aukume): Mena ka kitea he raruraru i te matawai, ka tūtohu pea tō tākuta i tētahi MRI hei tirotiro hohonu ake i te roro me te taurakira.
- Amniocentesis: I roto i tēnei whakamātautau, ka tangohia he tauira iti rawa o te wai amniotic e karapoti ana i te pēpi, ka whakamatautauria. Mena ka teitei te taumata o te AFP i roto i taua wai, he tohu pea tēnei o te hapa ngongo io.
He rongoā kei reira mō tēnei?
Koinei te pono uaua o tēnei kaupapa. Kāore he maimoatanga, he rongoā rānei mō te anencephaly. He mate tēnei kāore e hototahi ki te ora.
Ina whiwhi koe i tētahi tātaritanga pēnei, ka whakaratohia e ngā tākuta me ngā kaimahi o te hōhipera te tautoko kare ā-roto e hiahiatia ana e koe me tō whānau. Ka whakamāramahia e rātou te āhuatanga ki a koe, ka kōrerohia ō whiringa, ā, ka āwhina i a koe i tēnei wā uaua.
Tērā pea kei te āwangawanga koe kei mamae tō pēpi. Engari e ai ki tā mātou i kōrero ai i mua ake nei, kāore ngā pēpi me te anencephaly e mamae nā te mea kua ngaro ngā wāhanga matua o te roro. Nō reira kaua e manukanuka.
He aha te mea ka taea te mahi hei ārai i tēnei momo āhuatanga?
Ahakoa kāore e taea te ārai katoa, tera ētahi mea ka taea e koe te mahi hei whakaiti i tō mōrearea. He mea nui rawa ēnei mēnā kei te whakaaro koe kia hapu anō.
- Tangohia te waikawa folic: Koinei te mea tino nui. Tīmata ki te tango i te 400 mcg (micrograms) o te waikawa folic i ia rā, i te iti rawa i te 3 marama i mua i tō haputanga. Nā te mea ka puta ngā hapa ngongo io i ngā wiki tuatahi o te haputanga, he mea nui kia tangohia te waikawa folic mai i te wā e ngana ana koe ki te hapu. Mena kua whānau he pēpi me te hapa ngongo io i mua, ka tūtohu pea tō tākuta kia nui ake te horopeta o te waikawa folic.
- Rapua he tohutohu hauora (Tohutohu i mua i te haputanga):Ki te mea kei te whakaaro koe kia hapu, tirohia he tākuta i mua i tō haputanga. Kōrerohia ngā rongoā e tangohia ana e koe, ngā mate hauora kē atu rānei kei a koe (pērā i te mate huka), ā, tikina ngā tohutohu e hiahiatia ana e koe kia hauora ai tō haputanga.
- Te āhua noho hauora: Kai i te kai taurite, karohia te waipiro me te kai hikareti. Ko te tiaki pai i tō hauora ka pā tika ki te hauora o tō pēpi.
He tino uaua ki te whakamanawanui i te pouri me te ohorere o te matenga o tētahi tamaiti pēnei. He mea nui kia whai hoa kōrero koe, kia whakapuaki atu hoki i ō kare ā-roto. Kōrero ki tō tāne, ki tō whānau, me ō hoa. Ki te tika, kaua e mangere ki te rapu āwhina i tētahi tohunga hauora hinengaro. Ki te taea e koe te whakauru atu ki ngā rōpū tautoko me ētahi atu mātua kua pā ki ngā wheako rite, he kaha nui anō hoki tēnā māu.
Karere Tangohia ki te Kāinga
- He mate whānau kino te Anencephaly e puta mai ana i te korenga o te roro me te angaanga o te pēpi e whanake tika.
- Kāore he rongoā mō tēnei mate, ā, kāore e hototahi ki te oranga o te tamaiti.
- Ehara tēnei i te he o ngā mātua. He raruraru tēnei e puta mai ana i te tīmatanga o te hapūtanga.
- Mā te tango i te waikawa folic i mua i te hapūtanga ka taea te whakaiti i te mōrearea o ēnei hapa ngongo io.
- Ki te mea kei te whakaaro koe kia hapu, ina koa mēnā kua whānau kē koe i tētahi tamaiti he koha ngongo io, he mea tino nui kia kōrero koe ki tō tākuta me te tiki i ngā tohutohu e tika ana.
- Ki te mea he uaua ki a koe te aro atu ki te pouri e whai ake nei i tētahi mate pēnei, kaua e mangere ki te rapu tautoko mai i te whānau, i ngā hoa, i tētahi kaiwhakatakoto whakaaro ngaio rānei.
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