Nā mea e pono ai ʻoe e ʻike e pili ana i ka Down Syndrome

Ke haʻi aku ke kauka iā ʻoe ua loaʻa i kāu pēpē ka Down Syndrome, e manaʻo paha ʻoe i kahi manaʻo makaʻu nui a me ka haʻalulu. He mea maʻamau loa ia. ʻO nā nīnau e like me "He aha kaʻu e hana ai i kēia manawa?" a "Pehea lā ka wā e hiki mai ana o kaʻu keiki?" e holo nei paha i loko o kou manaʻo. Mai hopohopo. E kamaʻilio mākou e pili ana i nā mea āpau ma ke ʻano maʻalahi loa e hiki ai iā ʻoe ke hoʻomaopopo. I ka manawa e pau ai kāu heluhelu ʻana i kēia ʻatikala, e ʻoi aku kou maopopo i kēia maʻi.

I ka ʻōlelo maʻalahi, he aha ka Down syndrome?

ʻAe, no ka hoʻomaopopo ʻana i kēia, e hoʻomaka kākou me ka mea maʻamau loa i loko o ko kākou kino. Ua hana ʻia ko kākou kino me nā miliona o nā keena liʻiliʻi. Aia i loko o kēlā me kēia o kēia mau keena kahi hoʻonohonoho o nā "kuhikuhi" e loaʻa ana nā ʻike āpau e pili ana i ke ʻano o ka hana ʻana o ko kākou kino, ko kākou helehelena, ko kākou kiʻekiʻe, a me ke kala o ko kākou mau maka. I ka lāʻau lapaʻau, kapa mākou i kēia mau puke kuhikuhi he chromosomes .

ʻO ka maʻamau, loaʻa i kēlā me kēia cell i loko o ke kanaka olakino he 23 mau pālua o kēia mau chromosomes, no ka huina o 46 chromosomes . ʻO ka mea e hana ʻia i loko o ke keiki me Down syndrome, aia kekahi kope keu o ka chromosome 21. ʻO ia hoʻi, he 47 chromosomes nā cell o ke keiki ma kahi o 46.

Aia kekahi kumu kikoʻī no kēia kūlana? ʻO wai ka mea i ʻoi aku ka pilikia?

He nīnau kēia a nā mākua he nui e nīnau ai. "He hewa anei kēia no kākou?" ke noʻonoʻo nei lākou. ʻAʻole loa. ʻAʻole ʻo Down syndrome kahi maʻi i hana ʻia e kekahi mea a nā mākua i hana ai ma mua a i ka wā hāpai paha. Loaʻa ia ma kahi o ka manawa ʻole. ʻO ia hoʻi, hana ia ma ka manawa kūpono i ka wā o ka mahele ʻana o ke kelepona i ka wā e hui ai ka sperm a me ka hua manu i ka manawa o ka hāpai ʻana.

Eia nō naʻe, ua ʻike ʻia e ka noiʻi ʻana ua piʻi iki ka pilikia o ka loaʻa ʻana o kahi pēpē me Down syndrome i ka piʻi ʻana o ka makahiki o ka makuahine . He kiʻekiʻe loa kēia pilikia no nā wahine ma luna o 35 mau makahiki. Eia naʻe, ʻaʻole kēia manaʻo ʻaʻole kēia maʻi i nā makuahine ma lalo o 35 mau makahiki. ʻO ka ʻoiaʻiʻo, no ka mea, ʻoi aku ka nui o nā keiki a nā wahine ma lalo o 35 mau makahiki i hānau ai, ʻo ka hapa nui o nā keiki me Down syndrome i hānau ʻia e nā makuahine ma lalo o 35 mau makahiki.

He aha nā hōʻailona maʻamau o kahi keiki me Down syndrome?

Loaʻa i nā keiki me Down syndrome kekahi mau ʻano kino, noʻonoʻo, a me ke ʻano maʻamau. Eia naʻe, ʻaʻole i loaʻa kēia mau ʻano āpau i kēlā me kēia keiki.Pono hoʻi kākou e hoʻomanaʻo he ʻokoʻa paha ke ʻano o kēlā mau ʻano mai kekahi keiki a i kekahi.

Ma waho aʻe o kēia mau hōʻailona, ​​​​hiki ke kū mai nā pilikia olakino ʻē aʻe i ka wā e ulu ana ke keiki. No ka laʻana, nā maʻi pepeiao, nā pilikia ʻike, nā pilikia niho, ka obstructive sleep apnea, a me kekahi mau keiki he maʻi puʻuwai hānau . No laila, e nānā mau ke kauka i kēia mau keiki.

ʻEkolu mau ʻano nui o Down syndrome.

Ua māhele ʻia ka Down syndrome i ʻekolu mau ʻano nui, ma muli o ke ʻano o ka chromosome 21 keu i loko o nā pūnaewele.

1. Trisomy 21: ʻO kēia ke ʻano maʻamau . Hoʻopilikia ia i 95% o ka poʻe me Down syndrome. Hōʻike ʻia kēia ʻano e ke alo o ʻekolu kope o ka chromosome 21 i loko o kēlā me kēia cell o ke kino, ma kahi o ʻelua.

2. Translocation Down Syndrome: He mea kākaʻikahi kēia. Ma kahi o 4% o nā maʻi Down syndrome no kēia ʻano. ʻO ka mea e hana ʻia ma ʻaneʻi, ʻo ia ka neʻe ʻana o ka chromosome 21 keu a pau i kekahi chromosome ʻē aʻe a hoʻopili iā ia iho.

3. Mosaic Down Syndrome: ʻO kēia ke ʻano kakaikahi loa (ʻaʻole i ʻoi aku ma mua o 1%). ʻO ka mea e hana ʻia ma ʻaneʻi, ʻo ka chromosome 21 keu wale nō i loaʻa i kekahi mau pūnaewele o ke kino. ʻO nā pūnaewele ʻē aʻe he 46 chromosomes maʻamau. Ma muli o kēia, ʻoi aku ka liʻiliʻi o nā hōʻailona o kēia mau keiki ma mua o ka maʻamau.

Pehea e ʻike ai i kēia maʻi?

Hiki ke ʻike ʻia ka Down syndrome ma mua a ma hope paha o ka hānau ʻana.

Ma mua o ka hānau ʻana o ke pēpē (i ka wā hāpai)

Aia ʻelua ʻano hoʻokolohua i hana ʻia i ka wā hāpai.

• Nā Hoʻāʻo Nānā: Hoʻohana ʻia kēia mau mea e hoʻoholo ai i ka pilikia o ka pēpē e loaʻa ana iā Down syndrome. Hana ʻia kēia ma o kahi hoʻāʻo koko mai ka makuahine a me kahi scan ultrasound. Ana ke scan i nā mea e like me ka nui o ka wai ma ke kua o ka ʻāʻī o ka pēpē. Inā hōʻike kēia hoʻāʻo he pilikia, e kuhikuhi ʻia ʻoe no ka hoʻāʻo hou aku e hōʻoia iā ia.
• Nā Hoʻāʻo Hōʻoia: He 100% pololei kēia i ka hoʻoholo ʻana inā he Down syndrome ka pēpē. ʻO nā hoʻāʻo nui no kēia, ʻo ia ka Amniocentesis a me ka Chorionic Villus Sampling (CVS) . Pili kēia i ka lawe ʻana i kahi hāpana liʻiliʻi o ka wai amniotic a i ʻole ka placenta e hoʻopuni ana i ka pēpē a me ka hoʻāʻo ʻana no nā chromosomes.

Ma hope o ka hānau ʻana o ke pēpē

I ka wā e hānau ʻia ai ke pēpē, e nānā nā kauka i ke ʻano kino o ke pēpē. E ʻimi lākou i nā hiʻohiʻona maʻamau a mākou i kūkākūkā ai ma mua. Inā kānalua ʻia he Down syndrome, hana ʻia kahi hoʻāʻo koko i kapa ʻia he karyotype e hōʻoia iā ia. Hiki ke nānā ʻia kahi hāpana koko liʻiliʻi i lawe ʻia mai ka pēpē ma lalo o kahi microscope e hoʻoholo pono ai inā he kope keu o ka chromosome 21.

Ka mālama ʻana a me ke kākoʻo - pehea e kōkua ai i ke keiki?

ʻAʻole hiki ke ho'ōla piha ʻia ka maʻi Down syndrome. He maʻi ia no ke ola holoʻokoʻa. Eia nō naʻe, me ka mālama pono ʻana, ka hoʻōla kino, a me ke kākoʻo aloha, hiki ke kōkua ʻia ke keiki e ola i kahi ola hauʻoli a olakino hoʻi i ka hiki piha.

ʻO nā koho lapaʻau e komo pū me:

• Hoʻōla Kino: Kōkua i ka hoʻoikaika ʻana i nā ʻiʻo a hoʻomaikaʻi i nā mākau neʻe e like me ka hele wāwae a me ka ʻauʻau ʻana.
• ʻO ka Lapaʻau Hana: Hoʻomohala i nā mākau e pono ai e hana maʻalahi i nā hana o kēlā me kēia lā, e like me ke kāhiko ʻana iā ʻoe iho, ka ʻai ʻana, a me ka paʻa ʻana i ka peni.
• Lapaʻau ʻŌlelo: Kōkua iā ʻoe e ʻōlelo akāka, e hoʻomaopopo i ka ʻōlelo a haʻi, a hōʻike iā ʻoe iho.
• Nā papahana hoʻonaʻauao kūikawā: Mālama ʻia nā hana aʻo ma ke kula ma ke ʻano e kūpono i ka hiki ke aʻo o ke keiki.
• Lapaʻau no nā pilikia olakino ʻē aʻe: Inā he mau kūlana e like me ka maʻi puʻuwai a i ʻole nā ​​pilikia thyroid, e hāʻawi i ka lāʻau lapaʻau e pono ai.

Nā mea kūikawā e pono e mālama ʻia e pili ana i ke olakino o ke keiki

ʻOi aku ka nui o ka pilikia o nā keiki me Down syndrome i kekahi mau pilikia olakino, no laila he mea nui e makaʻala i kēia.

• Maʻi puʻuwai: Hiki i nā keiki he nui ke loaʻa i ka maʻi puʻuwai hānau. Pono kekahi o lākou i ke ʻoki ʻana.
• Nā pilikia thyroid: Hiki ke haʻahaʻa a kiʻekiʻe paha nā pae hormone thyroid.
• Nā pilikia o ka ʻōnaehana hoʻoheheʻe: He mea maʻamau nā kūlana e like me ka constipation a me ka gastritis.
• ʻO ka maʻi Alzheimer: ʻO ka poʻe me Down syndrome e piʻi aʻe ka pilikia o ka loaʻa ʻana o ka maʻi Alzheimer, kahi maʻi e hoʻoulu ai i ka nalowale o ka hoʻomanaʻo, i ko lākou ʻelemakule ʻana. Ua ʻike ʻia kahi gene ma ka chromosome 21 e pili ana i kēia.

No laila, he mea nui e ʻimi pinepine i ka ʻōlelo aʻo lapaʻau e pili ana i ka ulu ʻana a me ke olakino o ke keiki.

Ke kākoʻo āu e loaʻa ai ma ke ʻano he mau mākua

Mai hakakā hoʻokahi me nā manaʻo āu e ʻike ai ke ʻike ʻoe he Down syndrome kāu keiki. ʻAʻole ʻoe hoʻokahi.

• Nā kauka a me nā mea hoʻōla: E kūkākūkā me ka hui olakino o kāu keiki. E nīnau i nā nīnau.
• Kūkākūkā: Hiki iā ʻoe ke ʻimi i ke kūkākūkā e kamaʻilio e pili ana i kou mau makaʻu a me kou hopohopo.
• Nā Pūʻulu Kākoʻo: E hui pū me nā mākua ʻē aʻe o nā keiki me Down syndrome. Hiki iā ʻoe ke aʻo nui mai ko lākou mau ʻike. He mea hoʻoikaika nui nō hoʻi ka ʻike ʻaʻole ʻoe wale nō ke hele nei ma kēia huakaʻi.

Hiki i ka mālama ʻana i kahi keiki me Down syndrome ke lilo i mea paʻakikī. Akā he ʻike hoʻololi ola a aloha hoʻi. He aloha nui kēia mau keiki a makemake lākou e hauʻoli. Me ke kākoʻo kūpono, hiki iā lākou ke hele i ke kula, loaʻa nā hoaaloha, loaʻa kahi hana, a ola i nā ola holomua.