I a tātou e kōrero ana ki te tākuta i te wā e hapu ana, ka tūtaki tātou ki ētahi kupu kāore anō kia rangona, ki ētahi mate hauora onge rānei. He mea noa te mataku me te manukanuka i ēnei wā. I tēnei rā ka kōrero tātou mō tētahi koha whānau tino onge, tino kino hoki. Ka huaina tēnei mate ko Ectopia Cordis. Kaua e mataku ina rongo koe i tēnei. Kia mārama tātou ki ngā mea katoa mō tēnei, takitahi.
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He aha rawa te Ectopia Cordis?
Ki te kī ngāwari, ko te Ectopia Cordis te wā e whānau mai ai he pēpi me te ngākau katoa, tetahi wāhanga rānei o te ngākau kei waho o te tinana. He mate tino onge tēnei. Whakaarohia, e waru noa iho i roto i te miriona pēpi e whānau ana puta noa i te ao ka pā tēnei mate.
Nā te mea he mate tino kino tēnei, he maha ngā pēpi i whānau mai me te Ectopia Cordis ka mate i roto i te kōpū, i roto rānei i ngā rā e toru i muri i te whānautanga. Heoi anō, he taha tumanako kei roto i tēnei kōrero. Kua taea e ngā tīma hauora mohio o ngā tākuta, ngā nēhi, ngā kaiwhakaora tinana me ētahi atu tohunga te pupuri i ētahi pēpi i whānau mai me tēnei mate kia ora mō ngā wiki, ā, i ētahi wā tae noa ki ngā tau.
He aha te take mō tēnei?
Ki te pono, kāore anō kia kitea e ngā tohunga tētahi take tino tika mō tēnei, engari he iti ā rātou whakaaro.
- Ngā raruraru whanaketanga: Ko tētahi ariā, i te tipu haere o te pēpi i roto i te kōpū , ka puta ngā huringa ā-tinana ka whakararuraru i te tipu noa o te pēpi. Hei tauira, ka puta he whitiki muka i roto i te pēke wai (pēke amniotic) e karapoti ana i te pēpi, ka taea te aukati i te tipu o te pēpi.
- Te raruraru whanaketanga o te uma: Ko tētahi atu ariā ko te kore e whanake tika te uma o te pēpi. Ka ārai tēnei i te neke o te ngākau ki tōna wāhi tika i roto i te uma. Ka arahi pea tēnei ki te Ectopia Cordis me ētahi atu hapa o te ngākau.
- Te hononga ki ētahi atu mate: He maha ngā wā ka kitea te Ectopia cordis me ētahi atu hapa whānau e puta ana i waenganui o te tinana. Hei tauira, e hono ana ki ngā hapa o te sternum, te pericardium, me te pakitara o te puku. Ka taea hoki te hono atu ki ngā āhuatanga ira tangata pēnei i te Trisomy 18 me te Turner syndrome.
- Ngā take ira : Ko tētahi ariā hou ko te korenga o tētahi ira motuhake e kiia nei ko te "(BMP2)" i roto i ētahi kukune. He mea nui tēnei ira mō te whanaketanga tika o te ngākau me te taha mua o te uma. Nō reira, e whakapono ana rātou ko tōna korenga pea tētahi o ngā take.
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Check Availability →He aha ngā tohu ka taea te tautuhi?
Ko te tohu matua, me te tohu tino kitea o te Ectopia Cordis, ko te noho o te ngākau i waho o te tinana. Heoi, tera pea he hapa kei waenganui o te tinana o ēnei pēpi (te rārangi mai i te upoko ki raro).
| Ētahi atu raruraru i kitea | He whakamārama māmā |
|---|---|
| Te pakaru o te angaanga | He ngatata, he pakaru rānei te āhua o te mata. |
| Ngutu/kanohi whati | He ngatata kei te ngutu o runga, kei te waha rānei. |
| Kāore anō kia tino whanake ngā pukahukahu | Kāore anō kia whanake ngā pukahukahu o te pēpi ki te rahi tika. |
| Te korokoro | He piko, he scoliosis rānei o te tuaiwi. |
| He kōhao i te Taiepa Nui | He kōhao rerekē kei roto i te diaphragm, te uaua e wehe ana i te uma me te puku. |
Me pēhea te tautuhi a ngā tākuta i tēnei?
I te nuinga o te wā, mēnā he Ectopia Cordis tō pēpi, ka kitea pea i te wā e tirotirohia ana e te ultrasound i te wā e hapu ana. Ka kitea pea i te tīmatanga o te toru marama tuatahi o te haputanga. Me whai anō pea koe i tētahi atu whakamātautau ultrasound hei whakaū i te mate. He mea tino nui ngā hua o ēnei whakamātautau kia taea ai e koe te whakatau i te mea hei mahi i muri mai.
Ki te whakatau koe ki te haere tonu i tō hapūtanga, ka aro turukihia e tō tākuta te whanaketanga o tō pēpi. Tērā pea ka uru atu ki tēnei te MRI ( whakaahua aukume).Ka whakamahia ngā whakamātautau ) me te (Echocardiography). He whakamātautau motuhake te Echocardiography e whakamahi ana i ngā ngaru oro hei tango pikitia taipitopito o te ngākau.
Ka whakarōpūhia hoki tēnei āhuatanga e ngā tākuta i runga i te wāhi kei reira te ngākau.
| Te wāhi kei reira te ngākau | Te tikanga | Te nui |
|---|---|---|
| Uma | E tata ana ki ngā rara me te tuaiwi i te uma, i runga ake i te puku. | Tata ki te 64% |
| Te uma o te uma | I te pito o raro o te uma, e anga ana ki te puku. | Tata ki te 18% |
| Puku | I roto i te rohe puku. | Tata ki te 15% |
| Te kaki o te kōpū | Te taimaha o te kaki, e anga atu ana ki te tuaiwi. | Tata ki te 3% |
He wheako tino taumaha te whiwhinga o te tākutatanga o te Ectopia Cordis mō ngā whānau katoa. He mea tino nui kia kaha tonu te hinengaro i tēnei wā.
He aha ngā maimoatanga mō tēnei?
Ina kōrerohia ngā kōwhiringa maimoatanga , ko te mea tuatahi hei whakaaroaro ko te haumaru o te pēpi. Nō reira, ko te huarahi anake hei whānau i te pēpi ko te pokanga tākihi (C-section). Koinei te huarahi pai rawa atu hei whakaputa i te pēpi ki waho me te kore e whara te ngākau i waho.
I muri i te whānautanga, me āwhina pea tō pēpi ki te manawa. Hei mahi i tēnei, ka whakauruhia e ngā tākuta he ngongo kirihou ngāwari ki roto i te puku o tō pēpi hei whakarite i te rere o te hau. Ka werohia pea e rātou he wai motuhake mā roto i te ngongo e kapi ana i ngā pukahukahu hei āwhina i a rātou ki te mimiti pai ake i te hāora.
Ko te whāinga matua o te rongoā i te Ectopia Cordis ko te kati pokanga i te pūaha o te uma, te whakauru anō i te ngākau ki roto i te uma, me te whakatika i ētahi atu hapa o te ngākau. Kāore ēnei pokanga e mahia katoatia i te wā kotahi. He maha ngā wāhanga e mahia ana.
Ko te wero tuatahi, ko te wero nui rawa atu, ko te whakauru i te ngākau ki roto i tētahi uma iti iho i te āhua noa. Kia oti i te tākuta tēnā, ka hurihia e ia te tūnga o te wheua uma (sternum). I roto i ēnei āhuatanga, kāore e taea te whakawhiti ngākau .
He aha te "Manaaki Whakamarie"?
I ētahi wā, he tino mōrearea rawa te pokanga, ā, he iti rawa ngā tūponotanga ka angitu. I ēnei wā, ka kōrero tō tākuta ki a koe mō tētahi kōwhiringa e kīia nei ko te "Comfort Care".
Ko te whāinga he whakaiti i te mamae me te mamae e pā ana ki te pēpi, kia taea ai e rātou te noho i roto i te whakamarie me te rangimārie mō te toenga o ō rātou oranga. He momo manaaki motuhake tēnei e whai ana ki te whakarato whakamarie ki te pēpi me te whānau i tēnei wā uaua, kaua ki te rongoā me te whakaora i a rātou.
Karere Tangohia ki te Kāinga
- He tino onge, he tino kino hoki te Ectopia Cordis, he mate whānautanga e tū ana te ngākau o te pēpi i waho o te tinana.
- Ahakoa kāore anō kia kitea te tino take o tēnei, e whakaponohia ana ko ngā raruraru e puta ana i te wā e whanake ana te pēpi i roto i te kōpū o te whaea me ngā āhuatanga ira ka whai wāhi ki tēnei.
- I te nuinga o te wā ka kitea te mate i te wā e hapu ana mā te whakamahi i ngā matawai ultrasound.
- Ahakoa he maha ngā mahi pokanga uaua rawa atu e mahia ana hei maimoatanga, kāore e taea e ngā pēpi katoa te mahi pokanga.
- He wero tino uaua tēnei mō te whānau ki te whakatau i te mate. Nō reira, he mea nui kia kōrerohia whānuitia ngā kōwhiringa katoa, tae atu ki te pokanga me te "Manaaki Whakamarie," me tō tākuta, kia taea ai e koe te whakatau i te mea pai rawa atu mō tō pēpi me tō whānau.
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