Kei tō pēpi ēnei tohu? Me kōrero tātou mō te Down Syndrome

Kua kite koe i tētahi wā he rerekē te whanonga o ētahi pēpi i ētahi atu, ā, he rerekē anō hoki ō rātou āhua? Tērā pea kua whakaaro anō koe i taua mea mō tāu pēpi. I ēnei wā, ka puta ake tētahi pātai ki roto i tō tātou hinengaro, "He aha tēnei?" I tēnei rā ka kōrero tātou mō tētahi mate e hiahia ana kia aro nuitia, arā, ko te Down Syndrome. Kaua e manukanuka, ka kōrerohia tēnei mō te āhua māmā noa iho, i roto i tētahi huarahi e mārama ai koe.

He aha te Down Syndrome? He māmā noa iho...

He mate ira te Down Syndrome. Arā, ka puta mai i tētahi ira tāpiri i roto i te tinana o te pēpi i te wā e whānau ana. Tērā pea kei te whakaaro koe he aha ēnei ira. I roto i ngā pūtau iti rawa o ō tātou tinana, kei reira ngā mea e rite ana ki ngā pōro miro ririki. Koinei te mea e kiia nei e tātou he ira. Koinei ngā mea e whakatau ana i ngā āhuatanga maha mō tō tātou āhua, tō tātou teitei, tō tātou tae, me ō tātou pūkenga.

I te nuinga o te wā, e 23 ngā takirua o ēnei ira i roto i ia pūtau. Arā, e 46 ngā ira katoa. Heoi, he tārua tāpiri tō te pēpi he mate Down syndrome tōna o te ira 21, arā, kotahi anō. Kātahi ka 47 te tapeke o ngā ira i roto i ōna pūtau. Nā tēnei ira tāpiri ka rerekē te whanaketanga o te roro me te tinana o te pēpi.

Ko wai ka pāngia e te Down Syndrome?

Ka pāngia te tangata e te mate Down syndrome. He mea ira, ehara i te mea nā tetahi mahi a te whaea, a te pāpā rānei i mua atu, i te wā rānei e hapu ana. I te nuinga o te wā, ka puta noa mai, arā, ka puta noa mai. Ka tukuna iho i te nuinga o te wā mai i te whakatipuranga ki te whakatipuranga ina tūtaki te hua manu me te parāoa.

He aha ngā āhuatanga mōrearea mō te mate Down Syndrome?

Kei te rangahauhia tonutia tēnei. Heoi, kua whakaatuhia e ngā rangahau ka piki ake pea te mōrearea o te whānautanga o tētahi pēpi me te Down syndrome i te kaumātuatanga o te whaea . Ko ngā whaea neke atu i te 35 tau te pakeke ka nui ake te tūponotanga ka whānau he pēpi me te Down syndrome, he mate ira rānei.

Engari, ehara tēnei i te kī kāore ngā whaea taitamariki e pāngia e tēnei mate. Nā te mea he teitei ake te reiti whānau tamariki mō ngā whaea kei raro iho i te 35 tau te pakeke, ko te nuinga o ngā pēpi me te mate Down syndrome ka whānau mai i ngā whaea kei raro iho i te 35 tau te pakeke. Nō reira, ehara te pakeke i te mea anake.

He pēhea te noa o te mate Down Syndrome?

Ki te whakaritea ki ngā whenua pēnei i Amerika, he mate ira noa te Down Syndrome. Tata ki te 6,000 ngā pēpi e whānau mai ana me tēnei mate i ia tau i reira. Ko te tikanga, tata ki te kotahi i roto i te 700 ngā pēpi e whānau mai ana ka pāngia pea e tēnei mate. He tamariki anō hoki kei Sri Lanka e pāngia ana e tēnei mate, nō reira he mea nui kia mōhio ki tēnei.

He aha ngā tohu o te pēpi e pāngia ana e te Down Syndrome?

Ka taea e te mate Down te whakaputa i ngā tohu ā-tinana, ā-hinengaro, me ngā tohu whanonga. Heoi, ehara i te mea he tohu katoa ēnei e pā ana ki ia tamaiti, ā, ka rerekē te āhua o ngā tohu i ia tamaiti ki tētahi tamaiti.

Ngā āhuatanga ā-tinana (ngā panonitanga o te āhua)

Ka kitea ēnei tohu i te whānautanga mai, ā, ka kitea nuitia ake i te tipu o te pēpi.

• He papatahi te Piriti o Nahe .
• Te āhua nei kua anga whakarunga ngā kanohi .
• He poto paku te kaki .
• He iti iho ngā taringa, ngā ringa, me ngā waewae i te mea noa .
• He ngoikore ngā uaua i te whānautanga.
• Ka anga whakaroto te maihao iti o te ringa (e anga atu ana ki te koromatua) .
• Te aroaro o tētahi rārangi hōhonu kotahi i runga i te nikau (te paparinga o te nikau).
• Te teitei i raro iho i te toharite .

I te tipu haere o tō pēpi, tera pea ka puta mai ētahi atu tohu nā te whanaketanga o tōna tinana i a ia e noho ana i roto i te kōpū. Hei tauira:

• Ngā mate taringa, te ngaronga rānei o te rongo.
• Ngā raruraru tirohanga, ngā mate kanohi rānei.
• Ngā raruraru niho .
• He nui ake te pānga o ngā mate urutā, ngā mate rānei ki te tinana.
• Te apnea moe aukati, he āhuatanga e mutu ai te manawa i te wā e moe ana.
• Mate ngakau whānau .

Ka tirotirohia e tō tākuta ngā āhuatanga pēnei i ia wā.

Ngā āhuatanga hinengaro me te whanaketanga

Tērā pea ka pāngia tō tamaiti me te mate Down syndrome e ētahi wero ki te whanaketanga hinengaro nā te ira-kōroma tāpiri. Ka arahi pea tēnei ki ngā hauātanga hinengaro, ki ngā hauātanga whanaketanga rānei . Tērā pea kāore e taea e tō tamaiti te mahi i ngā mea e tika ana kia mahia e rātou i ētahi tau, arā, kāore pea rātou e eke ki ngā taumata whanaketanga i te tere rite ki ētahi atu tamariki. Hei tauira:

• Te hikoi me te nekeneke (ngā pūkenga nekeneke nui me ngā pūkenga nekeneke pai).
• Te kōrero (te whanaketanga o ngā pūkenga reo).
• Te ako (ngā pūkenga hinengaro).
• Te tākaro (ngā pūkenga pāpori me ngā pūkenga kare ā-roto).

Nā tēnei, ka roa ake pea te wā e taea ai e tāu tamaiti te mahi i ēnei mea:

• Te whakangungu wharepaku.
• Te kōrero i ngā kupu tuatahi.
• Te tango i te taahiraa tuatahi.
• Te kai takitahi.

Whakaarohia, ko ētahi tamariki ka hikoi i te tau kotahi, ko ētahi i te tau me te hawhe. Tērā pea kāore te tamaiti he mate Down syndrome e tīmata ki te hikoi tae noa ki te rua tau te pakeke. He wāhanga tūturu tēnei o tō rātou whanaketanga.

Ngā āhuatanga whanonga

Tērā pea ka whakaatu te tamaiti he mate Down syndrome i ētahi āhuatanga whanonga. Tērā pea nā te mea kāore e taea e rātou te whakapuaki mārama i ō rātou hiahia ki a koe, ki ō rātou kaitiaki rānei. Tērā pea ka kite koe i ēnei āhuatanga:

• Te pūkeke me te ngangau .
• Te uaua ki te arotahi .
• Ko ngā whanonga ātete, ātete rānei, he ia o te tino waranga ki ētahi mea, te mahi anō rānei i aua mea anō .

He aha te take o te mate Down Syndrome?

E ai ki tā mātou i kōrero ai i mua ake nei, ko te tino take o te mate Down syndrome ko te noho mai o tētahi irahiko tāpiri . Ina koa, nā te huringa o te wehewehenga o ngā pūtau i runga i te irahiko 21. He irahiko 21 tāpiri kei roto i ētahi, i roto rānei i ō rātou pūtau katoa e pāngia ana e te mate Down syndrome.

E toru ngā momo o te Down syndrome, ā, he rerekē ngā take o ia momo.

• Trisomy 21 `(Trisomy 21)`
• Te Whakawhiti
• Te āhua o te mosaic

He aha te Trisomy 21?

Koinei te momo Down Syndrome e tino kitea ana . Ko te tikanga o te "Trisomy" he tārua tāpiri o te chromosome. I roto i te Trisomy 21, e toru ngā tārua o te chromosome 21 o ia pūtau i roto i te kukune e tipu haere ana. I te nuinga o te wā, e rua noa iho. E 95% o te hunga e pāngia ana e te Down Syndrome e pāngia ana e tēnei momo.

He aha te mate Down Translocation?

I tēnei momo, ka piri te katoa, te wāhanga rānei o te ira 21 ki tētahi atu ira. Kāore i rite ki te trisomy 21, i reira, hei utu mō te whai i tētahi tārua anō o te ira 21 anake, ka piri ki tētahi ira rerekē te tau. Ka kitea tēnei momo i roto i te iti iho i te 4% o te hunga whai Down syndrome.

He aha te mate Mosaic Down?

Koinei te momo tino onge o te Down Syndrome. Ka puta i raro iho i te 1% o ngā take katoa. Ko te tikanga o te "Mōsaicism" he 46 ngā irahiko noa o ētahi pūtau, ko ētahi he 47 ngā irahiko (tae atu ki te irahiko tāpiri 21). He rite ki te mosaic i hangaia ki ngā kōhatu rerekē te tae. Koia i huaina ai ko te mosaic.

Me pēhea te tautuhi i te Down Syndrome i mua i te whānautanga o te pēpi?

Tērā pea ka ara ake ngā whakapae a ngā tākuta mō te mate Down syndrome i ētahi whakamātautau e mahia ana i te wā e hapū ana. Ka taea hoki e ētahi atu whakamātautau te whakaū i te mate.

Ngā whakamātautau tirotiro i mua i te whānautanga

Ka tirohia anake e ēnei whakamātautau mēnā kei te mōrearea tō pēpi ki te mate Down syndrome. Kāore e taea te whakaū .Tērā pea he whakamātautau toto, he matawai ultrasound rānei mō te whaea. I te wā o te matawai, ka rapu te tākuta i ngā tohu o tētahi mea pērā i te wai tāpiri i muri i te kaki o te pēpi. I ētahi wā, ahakoa he noa ēnei whakamātautau tōmua, tera pea he Down syndrome te pēpi.

Ngā whakamātautau tātaritanga i te wā e hapu ana

Ka taea e ēnei whakamātautau te whakaū i te mate Down Syndrome. Ka mahia ēnei mēnā ka whakaatuhia e ngā whakamātautau tirotiro kua whakahuatia ake nei he mōrearea. Nā te mea he iti noa te mōrearea o ēnei whakamātautau ki te whaea me te pēpi i roto i te kōpū, ka tūtohu te tākuta i muri i te whakaaroaro pai. Hei tauira:

• Amniocentesis: He whakamātautau e tango ana i te iti o te wai ki te taha o te pēpi.
• Te tango tauira chorionic villus (CVS): He tikanga e tangohia ai he wāhanga iti o te whenua uri, ka tirotirohia ai.
• Te whakamātautau toto pito mā te kiri (PUBS): He whakamātautau e tango ana i te iti o te toto mai i te pito.

Ka taea e ēnei whakamātautau te kite tika i ngā huringa o ngā chromosomes.

Me pēhea te tautuhi i te Down Syndrome i muri i te whānautanga o te pēpi?

I muri i te whānautanga o te pēpi, ka tirotirohia te pēpi e ngā tākuta mō ngā tohu ā-tinana kua whakahuatia ake nei. Hei whakaū i te mate, he whakamātautau motuhake e tango ana i te toto o te pēpi, e kiia nei ko te whakamātautau karyotype . Ko te tikanga o tēnei ko te tango i tētahi tauira o te toto o te pēpi, ka tirohia i raro i te karuārai hei tirotiro mēnā kei te pēpi te 21 o ngā irahiko tāpiri.

Ka aha koe mēnā ka kitea e koe he mate Down Syndrome tō pēpi i roto i te kōpū?

He whakatau tino uaua te kimi i te mate Down syndrome o tāu pēpi. Engari kia maumahara ehara i te mea ko koe anake. Ka taea e tō tākuta te āwhina i a koe ki te kimi i ngā rauemi, ngā ratonga tohutohu, me ngā rōpū tautoko e hiahiatia ana e koe.

I ngā wā pēnei, he tino āwhina te tiki tohutohu, te whakauru atu rānei ki tētahi rōpū tautoko e huihui ai ngā mātua o ngā tamariki he mate Down syndrome. I reira, ka taea e koe te whakapuaki i ō rātou wheako, te tiki tohutohu whai hua, me te whakapakari. He rite ki te wā e pā mai ana he raruraru i tō mātou kāinga, ka huihui te katoa ki te āwhina.

He aha ngā maimoatanga mō te Down Syndrome?

Kāore he rongoā mō te Down Syndrome. Heoi, he maha ngā maimoatanga me ngā tautoko e wātea ana hei āwhina i tāu tamaiti kia whanake ki tōna pūmanawa katoa, kia ora harikoa ai. Kua hangaia ēnei maimoatanga hei āwhina i te whanaketanga tinana me te hinengaro o te tamaiti. Ko ētahi tauira ko:

• Te whakaora tinana , te whakaora mahi rānei.
• Whakaora kōrero.
• I te kuraTe whai wāhi atu ki ngā kaupapa mātauranga motuhake.
• Te rongoā i ētahi atu mate hauora taketake .
• Te mau mōhiti mō ngā raruraru tirohanga, te whakamahi rānei i ngā taputapu whakarongo āwhina mō ngā ngoikoretanga o te whakarongo.

Ko wai me noho ki te tīma tiaki o taku tamaiti?

Mena he mate Down syndrome tō tamaiti, me toro atu rātou ki ngā tohunga maha kia mōhio ai kei te ora ia. Kei roto pea i tēnei tīma:

• Ngā kaiwhakarato tiaki tuatahi : Tiakina te tipu, te whanaketanga, ngā werohanga, me ngā take hauora whānui o tāu tamaiti.
• Ngā tākuta motuhake e ai ki ngā hiahia o te tamaiti: Hei tauira, he tākuta ngakau, he tākuta endocrinologist, he tākuta ira, me te tākuta otolaryngology.
• Ngā kaiwhakaora kōrero : Āwhina i te tamaiti ki te kōrero.
• Ngā kaiwhakaora tinana : Whakakahangia ngā uaua me ngā pūkenga nekehanga.
• Ngā kaiwhakaora mahi: Whakawhanakehia ngā pūkenga e hiahiatia ana hei mahi i ngā mahi o ia rā me te ngāwari ake.
• Ngā kaiwhakaora whanonga: Āwhina ki te whakahaere i ngā wero kare ā-roto e pā ana ki te mate Down.

He aha atu ngā āhuatanga hauora ka hono atu ki te Down Syndrome?

Tērā pea ka pāngia te hunga whai mate Down syndrome e ētahi atu āhuatanga hauora e kitea ana i te whānautanga mai, e pāngia ana rānei i roto i te wā. Ka taea e te tākuta te āwhina i a koe me tāu tamaiti ki te whakahaere i ēnei āhuatanga. Ko ngā āhuatanga tino noa ko:

• Ngā raruraru ngākau .
• Ngā āhuatanga rerekē o te tairoi .
• Ngā raruraru o te pūnaha nakunaku : te mate puku, te mate puku, me te mate celiac.
• Autism : Ngā wero e pā ana ki ngā pūkenga pāpori, te whakawhitiwhiti kōrero, me ngā whanonga auau.
• Te mate a Alzheimer (i a koe e pakeke haere ana).

He nui ake te tūponotanga o te hunga whai Down syndrome ki te pāngia e te mate a Alzheimer?

Ae, he nui ake te mōrearea o te hunga whai Down syndrome ki te pāngia e te mate a Alzheimer i a rātou e pakeke haere ana. Kua whakaatuhia e ngā rangahau tata ki te 30% o te hunga whai Down syndrome i roto i ō rātou tau 50 me te tata ki te 50% o te hunga i roto i ō rātou tau 60 ka pāngia pea e te mate.

E kiia ana ko te ira 21 tāpiri te take o tēnei mōrearea nui ake. Nā te mea ka whakaputahia e ngā ira i runga i te ira 21 he pūmua e kiia nei ko te pūmua amyloid precursor, koinei te take o ngā huringa e kitea ana i roto i ngā roro o ngā tūroro Alzheimer.

Ka taea te ārai i te mate Down Syndrome?

He mate ira te Down syndrome, nō reira kāore e taea te ārai . Ki te hiahia koe ki te mōhio ki tō mōrearea ki te whānau tamariki me taua mate, kōrero ki tō tākuta mō te tohutohu ira.

He aha ngā mea ka tumanakohia e koe mēnā he tamaiti Down Syndrome tāu?

Mā te tautoko tika me te aroha, ka taea e ngā tamariki whai Down syndrome te noho harikoa me te ora hauora . Mā te maimoatanga me ngā rongoā ka taea e rātou te āwhina i a rātou ki te wikitoria i ngā taumata whanaketanga, te ako tahi me ētahi atu tamariki o tō rātou tau, te kimi hoa, me te whai mahi angitu.

He maha ngā rōpū me ngā rauemi hei āwhina i ngā mātua, ngā whānau, me ngā kaitiaki.

He rongoā kei te wātea mō te mate Down Syndrome?

Kāo. He mate mō te wā katoa te mate Down syndrome, ā, kāore he rongoā . Heoi, ka taea te whakahaere i ngā tohumate, ā, he maimoatanga anō hoki mō ētahi atu mate hauora ka puta.

He aha te roanga o te oranga mō te hunga whai Down Syndrome?

I ēnei rā, ko te roanga o te oranga mō te tangata whai Down syndrome he 60 tau, neke atu rānei . Tērā pea ka hiahia rātou ki te tautoko me te manaaki puta noa i ō rātou oranga.

He aha ngā rauemi e wātea ana mō te hunga whai Down syndrome me ō rātou whānau?

He maha ngā rauemi hei āwhina i te hunga whai mate Down syndrome me ō rātou whānau. He maha ngā whānau e uru atu ana ki ngā rōpū tautoko mate Down syndrome ki te whakapuaki i ō rātou wheako me te kōrero mō ngā huarahi hei āwhina i ā rātou tamariki kia ora hauora, kia whai hua hoki.

Tērā pea ka hiahia te hunga whai Down Syndrome ki te tautoko puta noa i ō rātou oranga. Haunga te rongoā hinengaro, tērā pea ka hiahia hoki rātou ki te āwhina mō ngā mea pēnei i te mātauranga, te mahi, me te noho motuhake. He maha ngā whakahaere e whakarato ana i te mātauranga me te kaha ki ēnei tāngata me ō rātou whānau. He rite tonu ngā whakahaere me ngā kaupapa i Sri Lanka, nō reira ka taea e koe te tirotiro i a rātou.

He aha ngā pātai me pātai atu e au ki taku tākuta?

• Mena kei te whakapae ahau kei te pāngia ahau e te Down Syndrome, me pēhea taku whakarite mō te whānautanga o taku pēpi?
• Me pēhea taku tautoko i taku tamaiti?
• Ka taea e koe te tūtohu mai i ētahi rauemi hei āwhina i ngā whānau?
• Ko wai me noho ki te tīma tiaki o taku tamaiti?

Ka taea e te hunga whai Down Syndrome te whānau tamariki?

Ae, ka taea e te hunga whai Down Syndrome te whānau tamariki. Tata ki te 50% o ngā wāhine ka taea te whānau tamariki. Tērā pea he iti ake te momo whānau o ngā tāne. Mō te whaea whai Down Syndrome, ko te mōrearea o te tuku i te mate ira ki āna tamariki kei waenga i te 35% me te 50%.

He mea noa te pōuri nui ina kitea e koe he mate Down syndrome tāu tamaiti. I a koe e ngana ana ki te aro atu ki ngā purongo, kia mahara ehara koe i te mea ko koe anake, ā, ko te chromosome tāpiri o tāu tamaiti he wāhanga o tōna tuakiri. Ka taea e koe te tiki tautoko mai i te tīma hauora o tāu tamaiti, mai i ngā rōpū whānau me ngā kaitiaki rānei kia ako atu ai koe mō te mate me te āwhina i tāu tamaiti kia ora.

Ngā mea tino nui hei maumahara mā tātou (Karere hei tango ki te kāinga)

Ehara te mate Down syndrome i te mea hei wehi, he mea nui kia mōhio pai koe ki tēnei āhuatanga.

• He mate ira tēnei, ehara i te he o tetahi.
• He rerekē ia tamaiti, ia tamaiti, ā, he rerekē te ara whanaketanga o ngā tamariki whai Down syndrome.
• Mā te tautuhi wawe me te maimoatanga me te tautoko e tika ana, ka taea hoki e ēnei tamariki te ora harikoa, te ora whai tikanga.
• Kāore koe i te mokemoke! He maha ngā tāngata me ngā rauemi hei āwhina me te tautoko i a koe. Kia anga atu ki tēnei wero me te waiaro pai me te aroha .

Kia maumahara, he taonga utu nui ia tamaiti. Mēnā ka hoatu ki a rātou te aroha, te manaaki, me te whai wāhitanga e hiahiatia ana e rātou, ka taea e rātou te wikitoria i te ao!

` Te mate Down, ngā ira, ngā mate ira, te whanaketanga o te tamaiti, ngā matea motuhake, te mātauranga hauora, Sri Lanka