Kei te pūwero te pūhā o tāu pēpi? Me kōrero tātou mō te Bladder Exstrophy!

Ina titiro te whaea, te pāpā rānei ki tētahi pēpi hou, e tumanako ana rātou kia kite i tētahi tamaiti hauora, kua tino ora. Engari whakaarohia, me pēhea mēnā ka kite koe i tētahi pūkahukahu o te pēpi e puta mai ana i te kiri o tōna puku? He tirohanga tino mamae, he tirohanga whakamataku hoki. Koinei te mea e kiia nei e mātou ko te Bladder Exstrophy i roto i te rongoā. He mea tika kia mataku, kia manukanuka hoki ina kite koe i tēnei. Engari ko te mea nui ko te whai hua o tētahi maimoatanga mō tēnei. Nō reira, me kōrero tātou mō ngā mea katoa me te mārama me te ngāwari.

He aha te Bladder Exstrophy?

He mate whānau onge te exstrophy o te pūkahukahu. I te nuinga o te wā, i te wā e tipu ana te pēpi i roto i te kōpū, ka whanake ngā whekau o roto, tae atu ki te pūkahukahu, i roto i te tinana. Heoi, i roto i tēnei mate, ka whanake te pūkahukahu o te pēpi i waho o te tinana, ka kitea ki te kiri i te puku o raro.

I roto i tēnei āhuatanga, koinei te mea ka tupu:

• Kāore te kiri me ngā wheua hope i te puku o raro e hono tika ana.
• Nō reira, ka kitea te pūkahukahu mā te kiri o te puku.
• Ko te pūkahukahu, e rite ana ki te poihau i te nuinga o te wā, he papatahi te āhua i tēnei wā.
• Nā reira, kāore e taea e te pūkahukahu te pupuri mimi, te mahi rānei i tōna āhua noa. Ka turuturu tonu te mimi ki waho.

He aha te pānga o tēnei āhuatanga ki te tinana o te pēpi?

Kia titiro tātou ki te mahi a te pūnaha mimi. Ina kī tō pūkahukahu i te mimi, ka tukuna he tohu mai i te pūnaha io ki te roro e mea ana, "Kua kī te pūkahukahu ināianei." Kātahi ka kōpiri ngā uaua o te pūkahukahu (kōpiri), ā, ka tukuna te mimi mā te urethra.

Engari kāore tēnei tukanga e puta i roto i te pēpi e pāngia ana e te Bladder Exstrophy. Nā te mea kei waho te pūkahukahu o te pēpi, kāore he wāhi hei kohi mimi. Nō reira, ka rere tika atu te mimi i hangaia e ngā whatukuhu mā roto i tēnei pūkahukahu tuwhera i roto i te puku.

He rerekē ngā momo o te Bladder Exstrophy?

Ae, ko te Bladder Exstrophy he mate nō roto i tētahi rōpū whānautanga koha e kiia nei ko te Bladder Exstrophy-Epispadias Complex (BEEC). Tērā pea kotahi anake o ēnei mate kei ētahi tamariki, ko ētahi ia he maha ngā mate kei a rātou.

He mea noa tēnei āhuatanga?

Kāo, he tino onge te Bladder Exstrophy. Kotahi anake i roto i te 50,000 pēpi hou ka pāngia.

He aha ngā tohu matua?

Ko te tohu matua, ko te tohu tino kitea ko te pūkahukahu e puta mai ana i te puku. Hei tāpiri, ka kitea anō hoki ētahi atu tohu.

• Kei raro rawa atu te pito o te puku i te mea noa.
• Kāore ngā wheua tūtae e hono ana, engari e tū wehe ana.
• Tērā pea kei mua rawa atu te nono i te mea noa.
• Mō ngā tama , kāore pea ngā rae i heke ki roto i te kiriuhi (ngā rae kāore anō kia heke).
• Ka pāngia pea ētahi tamariki e te hernia , pērā i te hernia inguinal me te hernia pito.

He aha ngā take me ngā āhuatanga mōrearea mō tēnei?

Kāore anō kia mōhiotia te tino take o tēnei āhuatanga , engari e whakapono ana ngā tākuta he hononga o ngā āhuatanga ira me te taiao pea te take. He mea nui kia mārama kāore he he o ngā mātua ki te take o tēnei āhuatanga.

Anei ētahi o ngā āhuatanga mōrearea kua tautuhia:

• Hītori whānau: Mena i pāngia tētahi o ngā mātua i tēnei mate i a rātou e tamariki ana, tata ki te 1 i roto i te 70 te tūponotanga ka pāngia tā rātou tamaiti.
• Iwi: Kua kitea he mea noa tēnei mate i waenga i te iwi Pākehā.
• Ira Tangata: E toru ngā wā ka nui ake te pānga o tēnei mate ki ngā tama i ngā kōtiro.
• Ngā maimoatanga whakawhānau: E whakaatu ana ētahi rangahau mā te whakamahi i ngā tikanga pēnei i te Hangarau Āwhina Whakawhānau (IVF) ka paku whakanui ake i tēnei mōrearea.

He aha te āhua o te maimoatanga me te tirohanga?

Me tino pokanga te pēpi e pangia ana e te Bladder Exstrophy. Koinei anake te maimoatanga. I runga i te kaha o te mate o te pēpi, ka taea te whakatika katoa i te mate mā te pokanga kotahi, neke atu rānei.

E rua ngā huarahi e whakahaerehia ai te pokanga i te nuinga o te wā:

1. Pokanga takitahi: I ētahi wā, ka kati te puku, ā, ka whakatikahia te urethra i roto i te pokanga kotahi ka mahia i roto i ngā marama tuatahi i muri i te whānautanga o te pēpi.

2. Pokanga wāhanga-toru: Koinei te tikanga e tino mahia ana.

• Wāhanga tuatahi (muri i te whānautanga): I roto i ngā rā torutoru o te whānautanga, ka whakanohoia te pūkahukahu o te pēpi ki roto i te tinana, ā, ka kati te puku. I taua wā anō, ka mahia he pokanga (`osteotomy`) hei hono i ngā wheua hope, e tawhiti ana te tawhiti.
• Wāhanga 2 (tata ki te 6 marama): Ka hangaia anō e tēnei pokanga (te whakatika epispadias) ngā whekau whakaputa uri me te urethra.
• Wāhanga 3 (tata ki te 4-5 tau): I tēnei wā kua tae te tamaiti ki te tau mō te whakangungu wharepaku. Ka mahia tēnei pokanga ('augmentation cystoplasty') kia nui ake ai te pūkahukahu hei pupuri i te mimi.

Ngā raruraru pea mō te wā roa

Ahakoa i muri i te maimoatanga, ka pāngia pea ētahi tamariki e ngā raruraru tōngāmimi, e ngā raruraru tākihi rānei.

• Mate whatukuhu (pyelonephritis)
• Ngā kōhatu whatukuhu
• He paku teitei ake te mōrearea o te pāngia e te mate pukupuku tōngāmimi i te wā e pakeke haere ana.
• Ngā raruraru e pā ana ki te mahi ā-ira tangata.

Ko ngā wāhine whai mate pēnei e kiia ana he haputanga mōrearea nui tā rātou , ā, he maha ngā wā ka hiahiatia he pokanga tāne (C-section) hei whānau i te pēpi. Tērā pea ka hiahia ngā tāne ki ngā tikanga āwhina mō te whānau uri pēnei i te whakatōnga in vitro (IVF) kia whānau ai he tamariki.

Ngā kare ā-roto o tōu mātua

He mea uaua ki ngā mātua katoa te kite he mate whānau tō tāu tamaiti. Tērā pea ka mataku koe, ka manukanuka, ka hara hoki. He mea noa ēnei kare ā-roto katoa.

Engari kia maumahara, ehara tēnei i tōu he . Ahakoa ngā tākuta, kāore e taea te kī tika he aha i puta ai te Bladder Exstrophy. Hoatu he wā ki a koe kia mārama ai, kia urutau ai ki tēnei āhuatanga. He tino whai hua ngā maimoatanga. E kore tēnei āhuatanga e aukati i tāu tamaiti kia noho hei tamarikitanga noa. E tino mārama ana ngā tākuta ki ō kare ā-roto. Kei reira rātou hei tautoko me te tohutohu i a koe i ia taahiraa. Nō reira kaua e wehi ki te kōrero ki tō tākuta mō ngā mea katoa.