He aha te Tricuspid Atresia? Tohutohu, Take, me te Maimoatanga

Ko te tricuspid atresia he āhuatanga ngākau onge e puta ana i te wā whānau, kāore te waahanga tricuspid e hanga tika. Ko tenei waahanga kei waenganui i te atria matau me te ventricle matau, ā, ka tukuna te toto mai i te ruma o runga ki te ruma o raro o tō ngākau.

Ki te kore tenei waahanga, kāore te toto e rere tika i te taha matau o tō ngākau. Engari, ka rapu te toto i ētahi atu huarahi hei tae atu ki ō manawa me tō tinana, engari ka nui ake te mahi mō tō ngākau, kāore hoki e whānuitia te hāora ki ngā kiko o tō tinana.

He aha ngā tohu o te tricuspid atresia?

Ka puta ngā tohu o te tricuspid atresia i roto i ngā rā tuatahi, wiki rānei i muri i te whānau. Ko te nuinga o ngā pepe i tenei āhuatanga ka whakaatu i ngā tohu mārama e kore te mahi o tō rātou ngākau e tika.

Ko ēnei ngā tohu tino noa ka kitea e koe:

• Te tae kikorangi, parauri rānei o te kiri, ina koa hoki te taha o ngā ngutu, ngā maihao, me ngā toena (e kiia ana ko te cyanosis)
• Te uaua ki te manawa, te tere o te manawa rānei, ina koa i te wā e whāngai ana, e tangi ana rānei
• Te whāngai ngoikore me te piki taimaha puhoi
• Te ngenge nui, te wī rānei i ngā mahi noa
• Te riri, te ngangau rānei e kore e rite ki te noa
• Te werawera i te wā e whāngai ana, i ētahi atu mahi ngāwari rānei

Ka pāngia pea ētahi pepe e ngā tohu nui ake, pēnei i ngā mate manawa maha, i ngā wā e kikorangi rawa ana ō rātou ngutu me ō rātou kiri i te wā e tangi ana, e ngākau ana rānei. Ka puta ēnei tohu nā te kore o te toto hāora e tae atu ki te tinana o tō pepe.

I etahi wā onge, ko etahi tamariki he tricuspid atresia ngawari pea kaore e whakaatu i nga tohu marama tae noa ki te pakeke me te kaha ake. Heoi, ko te nuinga o nga keehi ka kitea wawe na te mea he tino kitea nga tohu.

He aha ngā take o te tricuspid atresia?

Ka whanake te tricuspid atresia i roto i ngā wiki waru tuatahi o te hapu, i te wā e hanga ana te ngākau o tō pepe. Kāore i tino mōhiotia te take tika, engari ka puta ina kore te waahanga tricuspid e whanake tika i tenei wā nui.

Kāore tēnei āhuatanga i puta mai i tetahi mea i mahi koe, kāore rānei i mahi i te wā hapu. Ka puta ngā hapa ngākau pēnei i te tricuspid atresia i te wā e whanake ana te ngākau, kāore hoki he huarahi hei ārai i a rātou.

Ka piki pea te tūponotanga e etahi take, ahakoa ko te nuinga o ngā pepe he tricuspid atresia ka whānau mai ki ngā mātua kāore he take tūponotanga e mohiotia ana:

• Ngā āhuatanga ira pēnei i te mate Down
• Te hītori whānau o ngā hapa ngākau whānau
• Te mate huka o te whaea kāore i te pai te whakahaere i te wā hapu
• Ētahi rongoā i tangohia i te wā hapu tuatahi
• Ngā mate o te whaea pēnei i te rubella i te wā hapu

He mea nui kia mōhio ai koe, ahakoa he maha ēnei take tūponotanga, he iti rawa te tūponotanga o te whānau pepe he tricuspid atresia. Ka pāngia tēnei āhuatanga e te 1 i roto i ngā pepe 10,000 e whānau ana.

He aha ngā momo tricuspid atresia?

Ka wehewehea e ngā tākuta te tricuspid atresia ki ngā momo rerekē i runga i te whakahaere o ngā hanganga o te ngākau, me ngā hapa ngākau kē atu e puta ana. Ko te mōhiotanga ki te momo motuhake o tō tamaiti ka āwhina i ngā tākuta ki te whakatakoto i te huarahi maimoatanga pai.

Ko ēnei ngā momo matua:

• Momo 1: Kei o rātou āhua noa ngā oko nui (aorta me te oko manawa), engari pea ka whakaitihia te waahanga manawa
• Momo 2: Kua whakawhitihia ngā oko nui (transposed), e pā ana ki te rere o te toto i roto i te ngākau
• Momo 3: Ngā whakahaere uaua atu o ngā oko toto nui o te ngākau

Ka wehewehea atu ia momo ki ngā momo iti i runga i te noa, te whakaiti, te aukati rānei o te waahanga manawa. Ka whakamārama te kaitātari ngākau o tō tamaiti i te momo o tō tamaiti, me te tikanga mō tō rātou tiaki.

Nōhea te haere ki te tākuta mō te tricuspid atresia?

Ko te nuinga o ngā keehi o te tricuspid atresia ka kitea i muri i te whānau, nā te mea he tino kitea ngā tohu. Heoi, ki te kite koe i ētahi tohu āwangawanga i tō pepe, me whakapiri atu koe ki tō tākuta tamariki tonu.

Karanga atu ki tō tākuta tonu ki te whakaatu tō pepe i:

• Te tae kikorangi, parauri rānei o ngā ngutu, ngā maihao, kiri rānei
• Te uaua ki te manawa, te tere o te manawa rānei
• Te whāngai ngoikore, te whakakahore rānei i te kai
• Te ngangau nui, te riri rānei
• Te kore kaha, te uaua rānei ki te noho ara i ngā mahi noa

Me hiahia ēnei tohu ki te tiaki hauora tonu, nā te mea ka whakaatu mai kei te kore te hāora e tae atu ki tō pepe. I ngā āhuatanga āwangawanga, kaua e whakaroa ki te karanga i te 111, ki te haere rānei ki te ruma āwangawanga tata.

Ki te kua whakatauhia te tricuspid atresia o tō tamaiti, kia mau tonu ngā whakatau whakamuri me tō kaitātari ngākau tamariki, ahakoa kei te pai te ahua o tō tamaiti.

He aha ngā take tūponotanga mō te tricuspid atresia?

Ahakoa ka puta te tricuspid atresia i te wā e whanake ana te ngākau, ka piki pea te tūponotanga o tēnei āhuatanga e etahi take. Ko te mōhiotanga ki ēnei take tūponotanga ka āwhina i a koe ki te kōrero whakamārama me tō rōpū hauora.

Ko ēnei ngā take tūponotanga e mohiotia ana:

• Ngā āhuatanga ira, ina koa te mate Down
• Te hītori whānau o ngā hapa ngākau whānau i ngā mātua, i ngā teina rānei
• Te mate huka o te whaea kāore i te pai te whakahaere i te wā hapu
• Ētahi rongoā i tangohia i te wā tuatahi o te hapu
• Ngā mate o te whaea pēnei i te rubella, cytomegalovirus rānei i te wā hapu
• Te pakeketanga o te whaea neke atu i te 35 tau (ahakoa he iti rawa tēnei piki o te tūponotanga)

He mea nui kia mahara koe, ahakoa he maha ngā take tūponotanga, kāore e tino tikanga ka pā tō pepe ki te tricuspid atresia. Ko te nuinga o ngā pepe he tricuspid atresia ka whānau mai ki ngā mātua kāore he take tūponotanga e kitea ana.

Ka puta te āhuatanga i te wā e whanake ana te ngākau, kāore hoki he mea ka taea e koe te ārai i a ia. Kāore tēnei he he o tetahi, kāore hoki e pā ana ki tō mātauranga, ki tō tiaki hapu rānei.

He aha ngā raruraru pea o te tricuspid atresia?

Ki te kore te maimoatanga, ka āhei te tricuspid atresia ki te arahi ki ngā raruraru nui, nā te kore o te toto hāora e tae atu ki te tinana o tō tamaiti. Heoi, mā te tiaki hauora tika, ka taea te ārai, te whakahaere pai rānei i ētahi o ēnei raruraru.

Ko ēnei ngā raruraru tino noa:

• Ngā whakaroa tipu me te piki taimaha ngoikore nā te mahi nui ake o te ngākau
• Ngā mate manawa maha nā te iti o te rere o te toto ki ngā manawa
• Ngā toto kōtiti e taea te hanga ina kore te toto e rere tika i roto i te ngākau
• Ngā raruraru i te tere o te ngākau (arrhythmias) e taea te whanake i te wā
• Te kore o te ngākau ki te kaha rawa te ngākau
• Ngā raruraru o te roro nā te iti o te hāora, ahakoa he onge ēnei mā te maimoatanga tika

Ka taea te puta mai ngā raruraru nui ake ki te kore te āhuatanga e maimoatia, tae atu ki te pēhanga toto mai i ngā toto kōtiti, i ngā whakaroa whanaketanga nui rānei. Heoi, ko te whakatau wawe me te maimoatanga pokanga tika ka whakaiti i ēnei tūponotanga.

Mā te tiaki hauora hou me ngā tikanga pokanga, ka taea e te tini o ngā tamariki he tricuspid atresia te noho ora, te ora wātea rānei. Ka tirotiro tata te rōpū ngākau o tō tamaiti mō ētahi tohu o ngā raruraru, ka whakarite i te maimoatanga kia rite ki te hiahia.

Me pēhea te whakatau i te tricuspid atresia?

Ko te nuinga o te wā ka whakatauhia te tricuspid atresia i muri i te whānau ina kite ngā tākuta i te tae kikorangi o te kiri o tō pepe, i ētahi atu tohu āwangawanga rānei. Ko te tukanga whakatau ka whai ngā kaupae maha hei tiki i te whakaahua tino tika o te hanganga ngākau o tō tamaiti.

Ka tīmata tō tākuta me te tirotiro tinana, ka whakarongo marie ki te ngākau o tō pepe mā te stethoscope. Kei te tirotiro rātou mō ngā oro ngākau, ngā ngākau rānei e kore e rite ki te noa e whakaatu ana pea i te raruraru ki te rere o te toto.

Ko ēnei ngā whakamātautau whakatau matua:

• Echocardiogram: Ko tēnei ultrasound o te ngākau ka whakaatu i te hanganga o te ngākau me te rere o te toto i roto i a ia
• X-ray uma: Ka āwhina i ngā tākuta ki te kite i te rāhi me te āhua o te ngākau me ngā manawa o tō pepe
• Electrocardiogram (ECG): Ka tuhi i te tere o te ngākau o tō pepe me te mahi hiko
• Pulse oximetry: Ka ine i ngā taumata hāora i roto i te toto o tō pepe
• Cardiac catheterization: Ka hiahiatia i etahi wā mō ngā ine taipitopito o ngā pehanga i roto i te ngākau

I etahi wa, ka taea te kitea te tricuspid atresia i te wa hapu ma te echocardiogram fetal, ina koa ki te whakaatu nga ultrasound noa i nga hapa ngakau pea. Ka taea e tenei te whakarite i nga taakuta mo te tiaki i to pepe i muri i te whanautanga.

He aha te maimoatanga mō te tricuspid atresia?

Ko te maimoatanga mō te tricuspid atresia ka whai tonu i te pokanga, nā te kore e taea te whakatika i te āhuatanga mā ngā rongoā anake. Ko te whāinga ko te whakarereke i te rere o te toto kia whiwhi te tinana o tō tamaiti i te toto hāora.

Ko te nuinga o ngā tamariki ka hiahia ki te maha o ngā pokanga e mahia ana i roto i ngā tau maha. Ka taea e tēnei huarahi whakatakotoranga te whakarite kia rite te ngākau o tō tamaiti, ka hoatu hoki te tupono pai mō te ora hauora.

Ko te raupapa pokanga noa:

1. Te pokanga tuatahi (i roto i ngā wiki i muri i te whānau): Ka hanga he hononga wā poto hei whakapai ake i te rere o te toto ki ngā manawa
2. Te pokanga tuarua (tata ki te 4-6 marama): Ka hono te vena cava nui tika ki te oko manawa
3. Te pokanga tuatoru (tata ki te 2-4 tau): Ka oti te rere o te Fontan, ka arahina katoa te toto e hoki mai ana ki ngā manawa

I waenganui i ngā pokanga, pea ka hiahia tō tamaiti ki ngā rongoā hei āwhina i tō rātou ngākau ki te mahi pai ake, ki te ārai rānei i ngā toto kōtiti. Ka tirotiro tata hoki te rōpū ngākau o tō tamaiti i te tipu me te whanaketanga o tō tamaiti.

Pea ka hiahia ētahi tamariki ki ētahi atu tukanga, pēnei i te whakauru pacemaker ki te whanake ngā raruraru i te tere o te ngākau, i ngā whakauru i runga i te catheter rānei hei pupuri i ngā oko toto e tuwhera ana. Ko te mahere maimoatanga motuhake ka whakawhirinaki ki te hanganga motuhake o tō tamaiti me te āhua o tō rātou whakautu ki ia pokanga.

Me pēhea te whakarato i te tiaki kāinga i te wā e maimoatia ana te tricuspid atresia?

Ko te tiaki i te tamaiti he tricuspid atresia i te kāinga ka hiahia ki te aro ki ētahi wāhi nui, engari mā te aratohu tika, ka taea e koe te āwhina i tō tamaiti kia tupu i waenganui i ngā whakaritenga hauora me ngā pokanga.

He mea nui rawa te whāngai me te kai, nā te mea ka hiahia ngā tamariki he āhuatanga ngākau ki ngā calorie atu hei tautoko i tō rātou tipu. Pea ka hiahia koe ki te whāngai i tō pepe i te maha atu o ngā wā me ngā rahinga iti, ā, ka whai hua ētahi tamariki i ngā huarahi calorie teitei, i ngā tāpiri rānei.

Ko ēnei ngā rautaki tiaki kāinga matua:

• Te tirotiro i te manawa o tō tamaiti me ngā taumata kaha i ngā mahi o ia rā
• Te whakarite kia whiwhi tō tamaiti i te okioki tika me te karo i te nui o te kaha
• Te tiaki i tō tamaiti i ngā mate mā te horoi pai o ngā ringa me te karo i ngā hoa mate
• Te hoatu i ngā rongoā kia rite ki te whakahau, ina koa ngā kaiwhakawai toto ki te hiahiatia
• Te pupuri i te tiaki niho kia ārai i ngā mate e pā ana ki te ngākau
• Te pupuri i ngā korero whakapā āwangawanga

Ko te taumata mahi o tō tamaiti ka whakawhirinaki ki tō rātou āhuatanga motuhake me te wā pokanga. Ka taea e ētahi tamariki te whai wāhi ki ngā mahi noa, ā, pea ka hiahia ētahi ki ngā whakarerekētanga. Ka hoatu e tō kaitātari ngākau ngā aratohu motuhake mō ngā mahi e ora ana.

He mea noa te manukanuka ki te tiaki i tō tamaiti i te kāinga. Kaua e whakaroa ki te whakapiri atu ki tō rōpū hauora me ngā pātai, me ngā āwangawanga rānei, ahakoa he iti pea.

Me pēhea te whakarite mō ō whakatau me te tākuta?

Ko te whakarite mō ngā whakatau me te rōpū ngākau o tō tamaiti ka āwhina i te whakarite kia whiwhi koe i ngā korero tino nui, kia whakapono hoki koe ki te mahere tiaki o tō tamaiti. Ka taea e te whakarite iti te whakaputa i ēnei haerenga kia nui ake te hua.

I mua i ia whakatau, tuhia ētahi pātai, āwangawanga rānei e pā ana ki te āhuatanga o tō tamaiti, te maimoatanga, te tiaki o ia rā rānei. He ngāwari te wareware i ngā pātai nui ina kei te tari o te tākuta koe, no reira ka āwhina te rārangi tuhituhi.

Ko ēnei ngā korero hei mauria mai:

• Te rārangi o ngā rongoā katoa me ngā horopeta me te wā
• Ngā tuhinga mō ētahi whakarerekētanga i ngā tohu, te kai, te taumata mahi rānei o tō tamaiti
• Ngā rekoata o ētahi mate, mate rānei mai i te whakatau whakamutunga
• Ngā pātai mō ngā pokanga, ngā tukanga rānei e haere mai ana
• Ngā āwangawanga mō te tipu, te whanaketanga, te mahi o ia rā rānei o tō tamaiti
• Ngā korero inihua me ngā hua whakamātautau o mua ki te kite i tetahi tākuta hou

Kaua e wehi ki te tono atu ki tō tākuta kia whakamārama i ngā mea i roto i ngā kupu ngāwari ake ki te kore koe e mōhio ki tetahi mea. He mea noa te ngaro i ngā korero hauora, ā, e hiahia ana ngā tākuta pai kia mōhio koe ki te āhuatanga o tō tamaiti me te mahere maimoatanga.

Whakaarohia te kawe mai i te mema whānau, i te hoa rānei ki ngā whakatau nui mō te tautoko ngākau, hei āwhina hoki ki te mahara ki ngā korero i te wā o te haerenga.

He aha te mea nui mō te tricuspid atresia?

Ko te tricuspid atresia he āhuatanga ngākau nui engari ka taea te maimoa e hiahia ana ki te tiaki hauora motuhake me ngā pokanga maha i roto i ngā tau maha. Ahakoa ka āhei tēnei whakatau ki te ngaro, ka haere te tini o ngā tamariki he tricuspid atresia ki te ora ora, te ora wātea rānei mā te maimoatanga tika.

Ko te mea nui rawa kia mahara ko te whakatau wawe me te maimoatanga ka puta he rerekētanga nui ki ngā hua. Kua pai ake te whakatau mō ngā tamariki he āhuatanga pēnei i ngā tikanga pokanga hou.

Ka hiahia tō tamaiti ki te whai whakamuri ora tonu me te kaitātari ngākau, engari kāore tēnei e tino tikanga ka āhei te tiaki hauora ki tō rātou ora. Ka whai wāhi te tini o ngā tamariki he tricuspid atresia ki ngā mahi kura, ki ngā hākinakina (mā ētahi whakarerekētanga), ki ngā wheako tamarikitanga noa.

He wero te whānau tamaiti he āhuatanga ngākau, engari kāore koe e noho kotahi i tēnei haerenga. Ka taea e tō rōpū hauora, whānau, me ngā rōpū tautoko te whakarato i te aratohu me te whakatenatena e hiahia ana koe hei āwhina i tō tamaiti kia tupu.

Ngā pātai e ui pinepinetia ana mō te tricuspid atresia

Ka taea te ārai i te tricuspid atresia?

Kāore, kāore e taea te ārai i te tricuspid atresia, nā te mea ka puta i te wā e whanake ana te ngākau i roto i ngā wiki waru tuatahi o te hapu. Kāore tēnei āhuatanga i puta mai i tetahi mea i mahi ngā mātua, kāore rānei i mahi i te wā hapu.

Ahakoa ka piki pea te tūponotanga e etahi take pēnei i te mate huka o te whaea, i ngā āhuatanga ira rānei, ko te nuinga o ngā pepe he tricuspid atresia ka whānau mai ki ngā mātua kāore he take tūponotanga e kitea ana. Ko te tango i ngā huaora i mua i te whānau me te pupuri i te hauora pai i te wā hapu he mea tūtohutia tonu, engari kāore e ārai i ngā hapa ngākau whānau.

Ka taea e taku tamaiti te takaro hākinakina me te tricuspid atresia?

Ka taea e te tini o ngā tamariki he tricuspid atresia te whai wāhi ki ngā mahi tinana me ngā hākinakina, engari ko te taumata mahi ka whakawhirinaki ki tō rātou āhuatanga motuhake me ngā hua pokanga. Ka hoatu e te kaitātari ngākau o tō tamaiti ngā aratohu motuhake mō ngā taumata mahi e ora ana.

Pea ka hiahia ētahi tamariki ki te karo i ngā mahi kaha rawa atu, i ngā hākinakina hononga rānei, ā, ka taea e ētahi atu te whai wāhi ki ngā mahi tamarikitanga noa. Ko te mea nui ko te mahi tahi me tō rōpū hauora hei kimi i te taurite tika e pupuri ana i tō tamaiti kia ora, ā, ka taea e rātou te pai ki te ora wātea.

E hia te roa ka hiahia taku tamaiti ki te tango rongoā?

Ko te hiahia ki ngā rongoā ka rerekē rawa i runga i te āhuatanga motuhake o tō tamaiti me te āhua o tō rātou whakautu ki te pokanga. Pea ka hiahia ētahi tamariki ki ngā kaiwhakawai toto mo te wā roa hei ārai i ngā kōtiti, ā, pea ka hiahia ētahi ki ngā rongoā mo te wā poto i muri i te pokanga.

Ka tirotiro tonu te kaitātari ngākau o tō tamaiti i ngā hiahia rongoā, ka whakarite i ngā whakahaunga kia rite ki te tipu o tō tamaiti me te whakarerekē o tō rātou āhuatanga. Kaua rawa e mutu, whakarerekē rānei i ngā rongoā kaore i te ui ki tō rōpū hauora tuatahi, nā te mea he mea nui ētahi rongoā hei ārai i ngā raruraru nui.

He aha te roa o te ora mō ngā tamariki he tricuspid atresia?

Mā te maimoatanga pokanga hou, ka taea e te tini o ngā tamariki he tricuspid atresia te tumanako kia ora rātou ki te pakeketanga. Kua pai ake te whakatau i ngā tekau tau kua pahure, i te wā i whakapai ake ai ngā tikanga pokanga.

Heoi, he motuhake te āhuatanga o ia tamaiti, ā, ko te roa o te ora ka whakawhirinaki ki ngā take pēnei i te momo tricuspid atresia motuhake, ētahi atu hapa ngākau e puta ana, me te āhua o tō rātou whakautu ki te maimoatanga. Ka taea e te rōpū ngākau o tō tamaiti te whakarato i ngā korero motuhake ake i runga i tō rātou āhuatanga motuhake.

Ka hiahia taku tamaiti ki te whakawhiti ngākau?

Ko te nuinga o ngā tamariki he tricuspid atresia kāore e hiahia ki te whakawhiti ngākau. Ko te huarahi pokanga whakatakotoranga (te rere o te Fontan) te nuinga o te wā ka angitu ki te whakarereke i te rere o te toto, ā, ka taea e ngā tamariki te noho ora noa.

Heoi, i etahi keehi kaore nga pokanga i angitu, ka puta mai ranei nga raruraru i te wa, ka whakaarohia pea te whakawhiti ngakau. Ka mahia tenei whakatau ma te atawhai e te ropu hauora o to tamaiti i muri i te whakaaro ki etahi atu whiringa maimoatanga.