Kua tirohia e koe te puku o tō pēpi hou, ā, kua kite koe he tino miro tōna kiri, he rite ki te hua maroke? He ngoikore rawa rānei tōna āhua, ā, kāore he kikokiko? He mea noa kia mataku koe hei whaea ina kite koe i ēnei mea. Engari he tohu pea tēnei mō tētahi mate whānau tino onge engari he kino e kiia nei ko te Prune Belly Syndrome. I tēnei rā, ka kōrerohia tēnei i roto i tētahi huarahi māmā ka taea e koe te mārama.
He aha te Prune Belly Syndrome?
He kupu ngāwari noa iho, he mate tino onge te Prune Belly Syndrome e puta mai ana i te whānautanga. E kiia ana hoki ko te Eagle-Barrett syndrome. Ko te "Prune" he hua e rite ana ki te karepe maroke, ki te paramu rānei. I ahu mai te ingoa i te mea he āhua miro te puku o ēnei tamariki.
E toru ngā tohu matua o tēnei mate, koia i huaina ai i ētahi wā ko te "triad syndrome".
1. Te korenga o ngā uaua puku, te ngoikore rawa rānei: Koinei te tohu matua o waho. Kāore i te tino whanake ngā uaua puku, ā, ka āhua pēpeke, ka miro te kiri o te puku.
2. Ngā rakuraku kāore i heke iho: Ko ngā tama tāne te nuinga e pāngia ana e tēnei mate. Ka noho tonu ō rātou rakuraku ki roto i te puku, kaua ki te heke ki roto i te kiriuhi.
3. He nui rawa ngā raruraru o te pūkahukahu me te pūnaha mimi: Koinei te raruraru tino kino o tēnei mate. Ka nui rawa te pūkahukahu, ka puta he raruraru nui ki te pūnaha mimi.
Mā ēnei raruraru o te pūnaha mimi ka kore e taea e te tamaiti te whakawātea katoa i tana pūkahukahu, ngā whatukuhu, me ngā ngongo e kawe ana i te mimi mai i ngā whatukuhu ki te pūkahukahu (ngā ureter).
Ki te whānau mai tētahi tamaiti me tēnei mate, tera pea he rerekētanga kei roto i te ara mimi. Hei tauira, ka whānui rawa te urethra, ka pupū, ka kī te mimi, ā, ka rere whakamuri te mimi ki ngā whatukuhu (rere whakamuri).
Ka taea hoki e te Prune Belly Syndrome te whakararu i ētahi atu whānautanga. Kei roto i ēnei ko ngā hapa o ngā pukahukahu, te ngākau, ngā whekau, me te pūnaha angaiwi. Ahakoa he onge te pānga o tēnei mate ki ngā kōtiro, 95% o ngā take e pā ana ki ngā tama.
He aha tēnei e tupu nei? He aha ngā take?
Ina hoki, kāore anō kia kitea e ngā tākuta te tino take mō te Prune Belly Syndrome, engari he maha ngā ariā e kī ana koinei pea te take.
- Whakaaro tuatahi:I te tipu haere o te pēpi i roto i te kōpū, e whakaarohia ana he aukati kei roto i te pūkahukahu, i te urethra rānei. Ka ārai tēnei i te mimi kia puta i te tinana, ka nui haere te pūkahukahu, ngā ureter, me ngā whatukuhu. Ina nui rawa te pūkahukahu, ka ārai te pēhanga e puta mai ana i te tipu o ngā uaua o te puku, me te heke iho o ngā testicle.
- Whakaaro tuarua: Nā te mea kāore ngā uaua o te puku e whanake tika ana, ka uaua te mimi a te tamaiti. Ka pupuhi te pūnaha mimi, ka puta he mate me ngā raruraru.
- Whakaaro tuatoru: Tērā pea he āhuatanga ōrite tēnei o te ngoikore o te uaua me ngā raruraru o te pūnaha mimi, ā, tera pea he take kāore anō kia mōhiotia (hei tauira, he hapa i roto i te pūnaha io).
I te mea kua maha ngā pūrongo mō tēnei āhuatanga e pā ana ki ngā tuākana/teina i roto i te whānau kotahi, kei te whakahaerehia hoki ngā rangahau hei whakatau mēnā he hononga ira kei tēnei.
He aha ngā tohu o tēnei mate?
Ka rerekē te āhua me te kaha o ngā tohu i ia tamaiti, i ia tamaiti e pāngia ana e te Prune Belly Syndrome. Heoi anō, kei reira ētahi tohu noa. Tirohia te ripanga i raro nei.
| Tohu | He whakamārama māmā |
|---|---|
| Puku miro | He āhua maroke, he hūpeke te kiri nā te kore o te papatipu uaua i roto i te puku. |
| Te pupuhi i te puku o raro | Te āhua nei kua pupuhi te puku o raro nā te nui haere o te pūkahukahu. |
| Te pupū o te whekau | Ka kitea te āhua taratara o ngā whekau mā roto i te kiri nā te ngoikore o te arai o te puku. |
| Ngā mate urutā mimi auau (UTI) | Ngā mate pāwera pinepine nā te kore e tika te mimi. |
| Te uaua ki te noho me te hikoi | He uaua ki te whakahaere i te tinana nā te korenga o te kaha o te uho. |
| Te whakawātea i te kiriuhi | Kāore ngā raho o ngā tamariki tāne i roto i te kiriuhi. |
Hei tāpiritanga, tera pea ētahi tamariki e pāngia ana e te waewae karapu, he āhuatanga e whānau mai ai te waewae me te waewae e anga whakaroto ana, me te spina bifida , he hapa whānau e kore ai e whanake tika ngā io o te tuaiwi.
Me pēhea te mohio ki tēnei āhuatanga?
I te nuinga o te wā, ka kitea pea tēnei āhuatanga e ngā tākuta i te wā e tirotirohia ana te pēpi mā te whakamahi i te ultrasound . Ki te kore, ka kitea mārama ēnei tohu i te wā o te tirotiro hauora tuatahi i muri i te whānautanga o te pēpi.
Tērā pea ka whakahaerehia e tō tākuta ētahi whakamātautau hei whakaū i te mate me te whakatau i te kaha tuturu o te mate.
- Matawai Ultrasound: Mā tēnei ka āwhina i te kite i te āhua o ngā whatukuhu me ētahi atu okana o te pūnaha mimi.
- Ngā whakamātautau hihi-X: E rua ngā momo hihi-X e whakamahi ana i tētahi tae motuhake hei werohanga ki roto i te tinana. Ko tētahi he pyelogram intravenous (IVP) me tētahi he voiding cystourethrogram (VCUG). Ka taea e ēnei te whakaatu mārama i ngā aukati me ngā raruraru i roto i te pūnaha mimi.
- Ngā whakamātautau toto: Mā ēnei whakamātautau ka taea te whakatau i te pai o te mahi a ngā whatukuhu o tāu tamaiti.
He aha ngā maimoatanga?
Nā te rerekētanga o ngā tohu me te kaha o te Prune Belly Syndrome, he maha ngā kōwhiringa maimoatanga. Mā te tākuta e whakatau te maimoatanga tino tika i runga i te āhua o te tamaiti. He maha ngā wā e hiahiatia ana he maha ngā pokanga.
| Ingoa o te pokanga (Te Kupu Ingarihi) | He aha te tikanga o tēnei? |
|---|---|
| Te tango i te toto i roto i te uaua | Ka hangaia he kōhao iti mā roto i te puku ki roto i te pūkahukahu, kia māmā ake ai te haere o te mimi. |
| Orchiopexy | Ka kawea ngā rakuraku o te puku ki roto i te kiriuhi, ā, ka whakatikihia mā te pokanga. |
| Te Cystoplasty | He pokanga tēnei hei hanga anō, hei hanga anō rānei i te pūkahukahu. |
| Te whakanui ake i te detrusor | He pokanga hei whakapakari i ngā uaua o te pūkahukahu. I ētahi wā, ka taea te whakamahi i tētahi wāhanga o te uaua o te hope. |
| Te whakawhitinga whatukuhu | I ngā take tino kino, ki te kore e mahi te tamaiti i tana mahi whatukuhu, tera pea ka hiahiatia he whakawhitinga whatukuhu. |
He aha te āhua o te tamaiti ā muri ake nei? (Te matapae)
He uaua ki te hoatu i tētahi whakautu kotahi ki tēnei pātai, nā te mea ko te heke mai o te tamaiti e whakawhirinaki ana ki te kaha o te mate, te tau o te tamaiti, me tōna hauora whānui.
Tērā ētahi tamariki ka mate i roto i te kōpū (i whānau mate). Tērā pea ka mate ētahi tamariki i roto i ētahi marama i muri i te whānautanga. He take tino tairongo tēnei.
Heoi, ahakoa te rongoā, ka pāngia pea ētahi tamariki e te ngoikore o te whatukuhu . Ko te ngoikore o te whatukuhu te wā e ngaro ai te 85-90% o ā rātou mahi, tae noa ki te wāhi kāore e taea e rātou te mahi tika. Kātahi ka kohia ngā para me te wai tāpiri ki roto i te tinana, ka tino pāngia te tamaiti. Ko ngā tohu ko te ngenge, te kore hiahia kai, te mākūkū, me te pupuhi o ngā waewae.
Ki te kore e pai te mahi a ngā whatukuhu, ko te dialysis , ko te whakawhitinga whatukuhu rānei te maimoatanga.
Hei whakamutunga, ki te mea he iti noa iho tō whakapae kei te whakaatuhia e tō pēpi tētahi o ēnei tohu, me toro atu ki te tākuta tonu . Mā te tautuhi wawe me te tīmatanga o te maimoatanga tika ka pai ake te hua mō tō pēpi.
Karere Tangohia ki te Kāinga
- He mate whānau tino onge te Prune Belly Syndrome, ā, ko ngā tamariki tāne te nuinga e pāngia ana.
- Ko ngā tohu matua e toru o tēnei mate ko te kiri miro i te puku, te ngoikore o ngā uaua, me ngā raruraru o te pūnaha mimi.
- Ahakoa kāore anō kia kitea te tino take o tēnei, e whakaponohia ana pea nā te aukati i roto i te pūnaha mimi i te wā e hapu ana.
- Ka taea tēnei te kitea mā roto i ngā matawai i te wā e hapu ana, i muri rānei i te whānautanga o te pēpi.
- He maha ngā wā e hiahiatia ana te pokanga hei rongoā. Mēnā he kino rawa te mate, tera pea ka pāngia koe e te ngoikore o tō whatukuhu.
- Mena kei tō tamaiti tētahi o ēnei tohu, kaua e whakaroa , me toro atu ki tō tākuta tonu . He mea tino nui te wawaotanga wawe.
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