Ina titiro koe ki tāu pēpi whānau hou, kua kite koe he miro te kiri o tōna puku, pērā i te pūreirei? He nui rawa rānei tōna puku? He mea noa ki te whaea, ki te pāpā rānei te mataku ina kite i ēnei mea. Engari he tohu pea tēnei o tētahi mate onge e kiia nei ko te Prune Belly Syndrome. Kaua e manukanuka, ka kōrerohia e tātou ngā mea katoa me te mārama, me te ngāwari.
He aha te Prune Belly Syndrome?
He māmā noa iho, he mate tino onge te Prune Belly Syndrome e kitea ana i te whānautanga (congenital). I ahu mai te ingoa i te mea he āhua miro te kiri o te puku o ēnei tamariki, ā, he rite ki te prune. E toru ngā take matua e pā ana ki tēnei.
1. Ngā uaua puku ngoikore, ngaro rānei: Kāore i te tika te whanaketanga o ngā uaua puku o te pēpi. Nā reira, ka ahua pōturi, ka miro te kiri o te puku.
2. Ngā rakuraku kāore anō kia heke: Mō ngā tama tāne, kāore anō ngā rakuraku kia heke i te tinana ki roto i te tarakona ki te wāhi e tika ana kia noho ai rātou.
3. Ngā raruraru o te pūnaha mimi: He raruraru kei te āhua o te hanganga o te pūnaha mimi o te pēpi, arā, ngā whatukuhu me te pūhā.
Haunga ēnei take matua e toru, ka pā pea tēnei mate ki ētahi atu wāhanga o te tinana o te pēpi. Hei tauira, ka pāngia pea te ngākau, ngā pukahukahu, ngā whekau, me te pūnaha angaiwi. Ka kiia hoki tēnei ko te Triad Syndrome, ko te Eagle-Barrett Syndrome rānei.
He pēhea te noa o tēnei āhuatanga?
He tino onge tēnei mate. Tata ki te kotahi i roto i te 30,000 ki te 40,000 pēpi hou ka pāngia. Ko te mea tino miharo ko te 95% o ngā take o tēnei mate e pūrongohia ana i roto i ngā tama .
He aha ngā tohu matua o tēnei mate?
Neke atu i te 50 ngā tohu o te Prune Belly Syndrome. Heoi, ka rerekē pea ēnei tohu i ia pēpi, i ia pēpi. Ka tirohia tō pēpi e tō tākuta, ā, ka mahia ngā whakamātautau e tika ana hei whakaū i te mate.
Kia titiro tātou ki ētahi o ngā āhuatanga matua e kitea whānuitia ana.
| Tohu | He whakamārama māmā |
|---|---|
| Te kōpiko o te kiri o te puku | He maroke, he kitakita te kiri nā te ngoikore, te ngaro rānei o ngā uaua o te puku. |
| Puku nui | Nā te mea he angiangi te kiri o te puku, ka kitea ngā mea pēnei i ngā whekau o roto. He nui ake te āhua o te puku. |
| Ngā porotiti kāore i heke iho | Mō ngā tama, kāore anō ngā rae kia heke ki roto i te kiriuhi ure ki te wāhi tika (ngā rae kāore anō kia heke) . |
| Ngā raruraru o te pūnaha mimi | Ngā raruraru pēnei i te aukati i te ara mimi, te whakanui i te whatukuhu, te pūkahukahu rānei, me te reflux vesicoureteral . |
| Ētahi atu raruraru tinana | Ka kitea anō hoki ngā raruraru o te pūnaha nakunaku, ngā ngoikoretanga o te ngākau, te scoliosis , me te waewae karapu . |
He aha tēnei e tupu nei? He aha te take?
Kāore anō kia kitea e ngā kairangahau tētahi take mō tēnei, engari he maha ngā ariā e kī ana koinei pea te take.
- Ngā raruraru o te pūkahukahu: E whakapono ana ētahi he rerekē te āhua o te pūkahukahu i puta mai i tēnei āhuatanga i te wā e tipu ana te pēpi i roto i te kōpū. Kāore e taea e te mimi te rere tika, ā, ka kohia, ka pupuhi te pūkahukahu, ngā ureter, me ngā whatukuhu. I te tipu haere o te pūkahukahu, ka pēhia ngā uaua o te puku, ka ngoikore.
- Te raruraru whanaketanga uaua: Ko ētahi e whakapono ana ko te take matua ko te kore e whanake tika ngā uaua o te puku o te pēpi.
- Ngā Take Ira: E whakaponohia ana he pānga ira pea tēnei āhuatanga, pērā i te mea e kitea ana i roto i ngā tuākana/teina. Ka kitea anō hoki te Prune Belly Syndrome i roto i ngā tamariki he āhuatanga ira pērā i te Trisomy 18 (Edwards syndrome) me te Down syndrome (Trisomy 21).
He aha ngā raruraru ka puta mai i tēnei āhuatanga?
He maha ngā pānga taha me ngā raruraru ka pā mai i te Prune Belly Syndrome. He rerekē i ia pēpi, i ia pēpi. Koinei ngā raruraru matua ka kitea.
- Te kōroke: Te uaua ki te tuku tūtae nā te ngoikore o ngā uaua o te puku.
- Ngā āhua rerekē o te wheua: ngā mea pēnei i te nekeneke o te hope, te ngaro o ngā ringa, ngā maihao, ngā matimati rānei.
- Ngā mate mimi: Te putanga pinepine mai o ngā mate mimi (UTI).
- Te kore tamariki, te mate pukupuku rānei: Ki te kore e heke iho i ngā rae, ka kore pea e tamariki, ka tūpono rānei ki te mate pukupuku ā muri ake nei.
- Te iti haere o te whanaketanga o ngā pukahukahu: Kāore ngā pukahukahu e whanake tika ana (te ngoikore o te pukahukahu).
- Te ngoikore o te whatukuhu mau tonu: Koinei te raruraru tino kino.
Me pēhea te tautuhi i tēnei mate?
I te nuinga o te wā, ka kitea wawetia tēnei āhuatanga i te wā o te matawai (ultrasound fetal) i a koe e hapu ana. Mā te matawai ka taea e te tākuta te kite i ngā āhuatanga o te pēpi:
- Ngā mate pāwera o te wheua, o te uaua rānei
- Ngā raruraru ngākau
- Te whanaketanga iti o ngā pukahukahu
- Ngā raruraru o te pūnaha nakunaku
- Kua pupuhi te pūkahukahu.
- Kua rahi haere ngā whatukuhu.
I muri i te whānautanga o te pēpi, ka whakapae pea te tākuta kei te pēpi tēnei mate mā te titiro noa iho. Hei whakaū i taua whakapae, he maha ngā whakamātautau ka taea te whakahaere, pēnei i:
- Ngā whakamātautau toto
- Matawai Ultrasound
- X-ray
- Matawai CT
- Matawai MRI
- Ko te whakamātautau mimi mō te korenga o te mimi (VCUG) - Ko te werohanga o tētahi wai motuhake ki roto i te pūkahukahu, me te tango i ngā hihi-X i te wā e mimi ana te pēpi hei tirotiro i te mahi a te pūnaha mimi.
Me pēhea te rongoā?
He rerekē te maimoatanga mō tēnei i ia tamaiti, i ia tamaiti. Ka mahi tahi tētahi rōpū tohunga ki te whakawhanake i te mahere maimoatanga tino tika mō te tamaiti. Ka whakaarohia ngā āhuatanga maha, tae atu ki te tau o te tamaiti, te āhua hauora, te kaha o te mate, me ngā hiahia o ngā mātua.
- Ngā mate ngawari: Ko ētahi tamariki kāore i te tino kino ngā tohu, ka whai hua pea mā te whakamahi i ngā paturopi anake hei ārai, hei rongoā rānei i ngā mate mimi.
- Pokanga: Heoi, he maha ngā tamariki e hiahia ana ki ngā pokanga maha hei whakatika i te pakitara o te puku, ngā ira tangata, te pūkahukahu, me ētahi atu wāhanga o te pūnaha mimi.
Ko te mea nui ko te whakatau i ia o ēnei maimoatanga mā te rangahau hōhonu i te āhua o te tamaiti, ā, he mea motuhake ki taua tamaiti.
Anei ētahi o ngā momo pokanga matua e mahia ana:
- Vesicostomy: Ka hangaia he kōhao iti mā roto i te puku ki roto i te pūkahukahu, kia rere ai te mimi mā roto.
- Orchiopexy: Ka tangohia ngā porotiti mā te pokanga ka whakanohoia ki roto i te kiriuhi.
- Te pokanga kiri:He pokanga uaua ake e hanga hou ana i te pūkahukahu.
I ētahi wā tino kino, ka hiahiatia pea he whakawhitinga whatukuhu mō te tamaiti.
Ka pēhea rā te heke mai o ēnei tamariki?
Ko te roanga o te oranga o ēnei tamariki e whakawhirinaki ana ki te kaha o te mate. Heoi anō, i waenga i te 10% me te 25% o ngā tamariki i whānau mai me tēnei mate ka mate i roto i te kōpū, ka mate rānei i ngā raruraru i roto i ngā wiki tuatahi o te oranga.
Heoi, tata ki te 40% o ngā tamariki e pangia ana e te Prune Belly Syndrome he pai te mahi a ō rātou whatukuhu, ā, ka taea e rātou te noho i te oranga noa.
Ko tētahi atu 30% ka hiahia ki te whakawhitinga whatukuhu i tētahi wā o ō rātou oranga.
He mea nui te tirotiro hauora me te whai i ngā tamariki e pāngia ana e tēnei mate mō te wā katoa. Ka āwhina tēnei ki te aroturuki i ngā raruraru o te pūnaha mimi me te whakaiti i te kino pea ki ngā whatukuhu.
He aha ngā wā pai rawa atu hei toro atu ki te tākuta?
He nui te mōrearea o ngā tamariki e pāngia ana e te mate pūkahukahu Prune Belly Syndrome ki ngā mate mimi (UTI), nō reira, ki te kite koe i ētahi tohu o te mate mimi, waea atu ki tō tākuta tonu atu.
| Ngā tohu whakatūpato o te mate mimi | |
|---|---|
| Te kirika, te makariri rānei | Te hiahia tonu ki te mimi |
| He nui te hiahia ki te mimi, engari he iti noa iho te mimi e puta mai ana | Te wera, te mamae rānei i te wā e mimi ana |
| Mamae o raro o te puku, o te tuara rānei | Te huringa o te tae o te mimi (pango, pōuriuri) |
| He kakara kaha, he kakara kino mai i te mimi | Te toto i roto i te mimi |
Hei tāpiritanga, rapua he tohutohu hauora mēnā he uaua anō tāu tamaiti ki te mimi, he tohu rerekē rānei e whakaatu ana. He mea nui anō hoki kia tirohia tāu tamaiti i te iti rawa kotahi i te tau .
He uaua pea te tiaki i tētahi pēpi i whānau mai me tēnei mate. Engari kia maumahara, ehara i te mea ko koe anake. Mā te mahi tahi me tētahi tākuta me tētahi rōpū tohunga e mōhio ana ki tēnei mate ka taea e koe me tō pēpi te hoatu i te kaha me te ārahi e hiahiatia ana e rātou.
Karere Tangohia ki te Kāinga
- He tino onge te mate Prune Belly Syndrome e puta mai ana i te whānautanga mai.
- Ko ngā tohu matua ko te kiri e totoro ana i te puku, te kore e heke iho o ngā raho i roto i ngā tama, me ngā raruraru ki te pūnaha mimi.
- Ka taea hoki te kite wawe i tēnei mate mā roto i ngā matawai i te wā e hapu ana.
- He rerekē ngā tikanga maimoatanga i runga i te āhua o te tamaiti, ā, he maha ngā wā e hiahiatia ana he pokanga maha.
- He tino morearea ngā mate mimi mō ēnei tamariki. Nō reira kia tūpato ki a rātou i ngā wā katoa. Tirohia te tākuta ina kite koe i tētahi tohu iti noa iho.
- Me mātua tirotirohia te tamaiti e te rata mō tōna oranga katoa, me te whai i ngā tohutohu hauora mōna .
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