He aha ka Wolf-Hirschhorn Syndrome? Hiki iā ia ke hoʻopilikia i kāu pēpē?

Ua lohe paha ʻoe i kahi maʻi genetic i kapa ʻia ʻo Wolf-Hirschhorn Syndrome? Ua ʻike paha ʻoe i kekahi mau hōʻailona i kāu keiki a ʻaʻole maopopo iā ʻoe he aha ia. Inā pēlā, he mea nui loa kēia ʻatikala iā ʻoe. E kamaʻilio maʻalahi kākou e pili ana i ia mea, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo. Mai makaʻu, ʻo ka ʻike ka hana mua.

He aha maoli ka Wolf-Hirschhorn Syndrome?

I ka ʻōlelo maʻalahi, he maʻi genetic kakaʻikahi ʻo Wolf-Hirschhorn Syndrome. Hoʻokumu ʻia ia e kahi loli liʻiliʻi i loko o nā chromosomes i loko o kā mākou mau cell. E noʻonoʻo iā ia e like me kahi hale i kūkulu ʻia e like me kahi hoʻolālā paʻakikī. Aia kēia hoʻolālā i loko o kā mākou mau genes. ʻO nā chromosomes nā hale e mālama ai i kēia ʻike genetic.

I mea e pololei ai, ʻo kēia kūlana i kapa ʻia ʻo Wolff-Hirschhorn syndrome e kū mai ana i ka wā e nalowale ai a holoi ʻia paha nā mea genetic ma ka hopena o ka lima pōkole o ka chromosome 4, aia i loko o kā mākou mau cell āpau. ʻO ia ke kumu i kapa ʻia ai i kekahi manawa ʻo '4p- syndrome'. ʻO ka leka 'p' ke kū nei no ka lima pōkole o ka chromosome.

Hiki i kēia loli hoʻoilina ke hoʻopilikia i nā ʻāpana like ʻole o ke kino o ke keiki, ʻoiai ka puʻuwai a me ka lolo . Hiki iā ia ke hana i kekahi mau keiki e loaʻa i nā ʻōʻili. Hiki i nā keiki me kēia maʻi ke loaʻa i kekahi mau hiʻohiʻona helehelena. No ka laʻana, ʻoi aku ka laulā o ka mamao ma waena o nā maka ma mua o ka maʻamau, kiʻekiʻe ka lae, a ʻoi aku ka liʻiliʻi o ke poʻo ma mua o ka maʻamau. ʻAʻole wale ia, hiki iā ia ke hoʻopilikia nui i ka ulu ʻana o ka noʻonoʻo a me ke kino o ke keiki.

ʻO wai ka mea i hoʻopilikia nui ʻia e kēia kūlana?

No ka mea, he maʻi hoʻoilina ka Wolff-Hirschhorn syndrome, hiki ke loaʻa i kekahi . I ka hapanui o nā hihia, ʻaʻole ia he hoʻoilina. ʻO ke ʻano kēia, ʻaʻole ia i hoʻoili ʻia mai ka makua a i ke keiki. I ka hapanui o nā hihia, ua hoʻokumu ʻia ke ʻano e kahi loli chromosome (de novo) . Hiki ke hana ʻia kēia i ka wā o ka ulu ʻana o nā hua manu o ka makuahine, a i ʻole i ka wā o ka ulu ʻana o nā sperm cell o ka makuakāne, a i ʻole i ka wā mua o ka embryo. Ke hana ʻia kēia loli "de novo", ʻaʻohe mea o ka ʻohana e pono e loaʻa i ke ʻano ma mua.

Eia nō naʻe, ua hōʻike ʻia nā noiʻi he ʻoi aku ka nui o ka loaʻa ʻana o kēia maʻi i nā kaikamahine ma mua o nā keikikāne.

Pehea ka maʻamau o ka Wolff-Hirschhorn syndrome?

He maʻi laha ʻole kēia. Wahi a nā helu helu, ua pili ʻia ma kahi o hoʻokahi i loko o 50,000 mau hānau ola.Ua manaʻo ʻia e pili wale ana kēia maʻi i kahi 100,000 mau kānaka. Eia nō naʻe, he haʻahaʻa paha kēia kuhi. ʻAʻole paha i loaʻa i kekahi mau keiki kahi hōʻailona kūhelu no ka mea he palupalu loa a ʻoluʻolu paha ko lākou mau hōʻailona a ʻaʻole paha lākou i loaʻa i ke ʻano. A i ʻole, hiki ke kuhi hewa ʻia nā hōʻailona he mau hōʻailona o kahi maʻi genetic ʻē aʻe.

He aha nā hōʻailona o ka Wolff-Hirschhorn syndrome?

Hiki ke ʻokoʻa nā hōʻailona o ka Wolff-Hirschhorn syndrome mai kekahi keiki a i kekahi keiki, a hiki ke ʻokoʻa ko lākou koʻikoʻi . Hoʻopilikia kēia mau hōʻailona i nā ʻāpana like ʻole o ke kino o ke keiki.

Nā hiʻohiʻona kūikawā i ʻike ʻia ma ka maka

Aia kekahi mau hiʻohiʻona helehelena kikoʻī e ʻike ʻia i nā keiki me kēia maʻi. ʻO kēia mau mea:

• Lehelehe māwae a lehelehe māwae paha: Hiki i kekahi mau keiki ke hānau ʻia me ka lehelehe māwae a lehelehe luna paha.
• Nā hiʻohiʻona helehelena ʻokoʻa: ʻO ke ʻano kēia, ʻaʻole like nā ʻaoʻao ʻākau a me ka hema o ka maka, a he ʻokoʻa paha ka nui a i ʻole ke ʻano.
• Alahaka ihu pālahalaha: Hiki ke pālahalaha ka piko o ka ihu.
• Lae kiʻekiʻe: ʻOi aku paha ke kiʻekiʻe o ka lae ma mua o ka maʻamau.
• Nā pepeiao haʻahaʻa a hewa paha: Hiki ke hoʻonohonoho ʻia nā pepeiao ma lalo o ka maʻamau a i ʻole aia kekahi mau loli i ke ʻano o nā pepeiao.
• Nā niho nalowale a ʻano ʻē paha: ʻAʻole paha e ʻike ʻia kekahi mau niho a i ʻole he mau ʻano ʻē paha i ke ʻano o nā niho.
• ʻAuwae liʻiliʻi (micrognathia): ʻOi aku ka liʻiliʻi o ka ʻauwae ma mua o ka maʻamau.
• Poʻo liʻiliʻi: ʻOi aku paha ka liʻiliʻi o ke poʻo ma mua o ka maʻamau.
• Nā maka ākea a puʻupuʻu: Ua hoʻonui ʻia ka hakahaka ma waena o nā maka, a ʻike ʻia paha nā maka he nui iki a puʻupuʻu. I kekahi manawa ua kapa ʻia kēia ʻo "ke ʻano o ka mahiole koa Helene," akā ʻaʻole like ke ʻano o nā mea a pau.

Nā hiʻohiʻona o ka ulu a me ka hoʻomohala ʻana

ʻOiai ke pēpē i loko o ka ʻōpū, lohi kona ulu ʻana . Hiki i kēia ke hana i kekahi mau pilikia i ka wā hānau:

• Nāwaliwali o nā ʻiʻo (hypotonia) a i ʻole nā ​​ʻiʻo i ulu pono ʻole: He palupalu paha ke kino o ka pēpē. Malia paha kēia no ka mea ʻaʻole i ulu piha nā ʻiʻo.
• Nā hanana holomua i lohi: E like me nā pēpē ʻē aʻe, pono ka manawa no nā mea e like me ka hoʻoikaika ʻana i ka ʻāʻī, ka ʻōwili ʻana, ka noho ʻana, ke kū ʻana, a me ka hele wāwae ʻana.
• Nā pilikia hānai: ʻO nā mea e like me ka hiki ʻole ke omo a i ʻole ka pilikia i ka ale ʻana i ka meaʻai hiki ke pale i ka pēpē mai ka loaʻa ʻana o ka meaʻai e pono ai lākou.
• Ka paʻakikī o ka loaʻa ʻana o ke kaumaha: Ma muli o kēia mau pilikia hānai, lohi ka loaʻa ʻana o ke kaumaha o ka pēpē.

Ma muli o kēia mau lohi o ka ulu ʻana a me ka ulu ʻana, ʻo ke keikiHiki iā ia ke hana i ke kino pōkole .

Nā hōʻailona e pili ana i ka lolo

ʻO nā keiki i hānau ʻia me ka maʻi Wolff-Hirschhorn, loaʻa paha iā lākou kekahi kīnā noʻonoʻo . Hiki ke maʻalahi kēia no kekahi mau keiki a ʻoi aku ka koʻikoʻi no kekahi. Ua hōʻike ʻia nā noiʻi he mau mākau pilikanaka maikaʻi paha kēia mau keiki, akā he pilikia paha kā lākou me ka ʻōlelo a me ke kamaʻilio ʻana . ʻO ke ʻano kēia, ʻoiai hiki iā lākou ke ʻakaʻaka a pāʻani me nā poʻe ʻē aʻe, he pilikia paha kā lākou e hōʻike ai iā lākou iho ma ka waha a me ka ʻōlelo ʻana.

Eia kekahi, hiki i kēia mau keiki ke loaʻa i nā hopu ʻana i ka wā kamaliʻi . I kekahi manawa hiki ke pale ʻia kēia mau hopu ʻana e ka lāʻau lapaʻau. Eia nō naʻe, i ka wā e ʻelemakule ai ke keiki, hiki ke emi ka pinepine o kēia mau hopu ʻana a nalo loa paha.

Nā hōʻailona e hoʻopilikia ana i nā ʻōnaehana kino ʻē aʻe

Hiki i ka Wolff-Hirschhorn syndrome ke hoʻopili i nā ʻāpana ʻē aʻe o ke kino o ke keiki:

• Piʻo ʻana o ka iwi kuamoʻo (scoliosis a kyphosis paha): Hiki ke hana ʻia nā kūlana e like me ka piʻo ʻana o ka iwi kuamoʻo i ka ʻaoʻao a i ʻole ke kūlou ʻana i mua o ka iwi kuamoʻo (kyphosis).
• ʻIli maloʻo: Hiki i ka ʻili ke maloʻo i nā manawa a pau.
• Nā pilikia o ka ulu ʻana o ka puʻuwai (atrial septal defect): Hiki ke loaʻa nā maʻi puʻuwai hānau e like me ka lua ma ka paia ma waena o ka atria o ka puʻuwai.
• Ka hemahema o ka ʻōnaehana pale: Ma muli o ka emi ʻana o ka hiki o ke kino ke pale aku i nā maʻi, hiki ke loaʻa pinepine nā maʻi.
• Nā pilikia hana puʻupaʻa: Hiki ke hoʻopilikia ʻia ka hana puʻupaʻa.
• Nā pilikia me ke ala mimi a me ka ʻōnaehana hānau keiki (ala genitourinary): Hiki ke loaʻa kekahi mau pilikia me ke ala mimi a i ʻole nā ​​​​​​mea hānau keiki.
• Nā pilikia ʻike: Hiki ke loaʻa kekahi mau pilikia ʻike.

No ke aha e kū mai ai ka Wolff-Hirschhorn syndrome?

E like me kā mākou i kūkākūkā ai ma mua, ʻo ke kumu nui o ka Wolff-Hirschhorn syndrome ka nalowale (holoi ʻia) o kahi ʻāpana o nā mea genetic ma ka lima pōkole o ka chromosome 4 (4p) . ʻO kēia nalowale o kahi ʻāpana o ka chromosome e hana ʻia i ka wā o ka hoʻokumu ʻia ʻana o ka hua manu o ka makuahine a i ʻole ka sperm cell o ka makuakāne, a i ʻole i nā pae mua o ka embryogenesis. I kēia manawa, i ka wā e māhele ai nā cell reproductive, ʻaʻole i kope pololei ʻia nā chromosomes, a haki kahi ʻāpana o kahi chromosome a nalowale.

I ka manawa kākaʻikahi loa, hiki ke hoʻoulu ʻia ka maʻi Wolff-Hirschhorn e kahi kūlana i kapa ʻia he chromosome apo . ʻO kēia ka wā e haki ai kahi chromosome ma nā wahi ʻelua a hui pū nā wēlau haki ʻelua e hana i kahi ʻano apo. Ke hana ʻia kēia, haki kahi ʻāpana o ka chromosome a wehe ʻia.

Ke nalowale kekahi keiki i kahi ʻāpana o kā lākou chromosome, ʻaʻole loaʻa i nā genes ma ia ʻāpana nā kuhikuhi e pono ai ke kūkulu ʻana i ke kino. ʻO ia ke kumu o nā hōʻailona o ka Wolff-Hirschhorn syndrome. Hiki ke ʻokoʻa ka nui o ka ʻāpana nalowale o ka chromosome mai kēlā kanaka a kēia kanaka. Inā nalowale kekahi keiki i kahi ʻāpana nui o kā lākou chromosome ʻehā, hiki ke ʻoi aku ka koʻikoʻi o nā hōʻailona.

He mea kēia i loaʻa mai nā hanauna mai?

ʻO ka hapa nui o ka manawa (ma kahi o 90%), ʻo kēia ma muli o kahi loli genetic "de novo" hou, akā ma kahi pakeneka liʻiliʻi loa (ma kahi o 10-15%) hiki ke hoʻoilina ʻia mai kekahi makua . I ia mau hihia, hiki i kekahi o nā mākua (ʻo ka makuahine maʻamau) ke loaʻa i kahi maʻi i kapa ʻia he balanced translocation .

I ka ʻōlelo maʻalahi, ʻo ka hoʻololi kaulike ʻana, ʻo ia ka wā e haki ai ʻelua a ʻoi aku paha nā chromosome i loko o ke kanaka, e hoʻololi nā ʻāpana kekahi i kekahi, a laila e hoʻopili hou ʻia ma ke ʻano ʻē aʻe. ʻO ka poʻe me kēia ʻano "hoʻololi kaulike" ʻaʻohe pilikia olakino a olakino lākou. Eia nō naʻe, i ka wā e loaʻa ai iā lākou nā keiki, ʻoi aku ka nui o ko lākou hiki ke hoʻoili i kahi ʻano hoʻololi kaulike ʻole i kā lākou mau keiki. ʻO ke ʻano kēia, hiki i ke keiki ke loaʻa i kahi ʻāpana keu a nalowale paha o ka chromosome 4. Inā hoʻoulu kēia hoʻololi i ka nalowale a i ʻole ka emi ʻana o kahi ʻāpana ma ka chromosome 4 i kapa ʻia ʻo 4p16.3, e loaʻa i ke keiki ka maʻi Wolff-Hirschhorn. I kekahi manawa, hiki i kēia "hoʻololi kaulike" ke holo i loko o nā ʻohana no nā hanauna.

Pehea ʻoe e ʻike pololei ai i kēia maʻi?

Hiki paha i kāu kauka ke kānalua i ka maʻi Wolff-Hirschhorn i ka wā ʻōpiopio o kāu keiki, ʻoiai inā ʻike lākou i nā hōʻailona e like me kēia:

• Nā hiʻohiʻona kūikawā ma ka maka
• Nā pilikia ulu
• Nā lohi o ka hoʻomohala ʻana
• Ka haʻalulu

Inā loaʻa iā ʻoe kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​e noiʻi hou aku ke kauka.

He aha nā hoʻokolohua e hōʻoia i ka hōʻoia?

ʻO ke ala nui e hōʻoia ai i ka ʻike ma o ka hoʻāʻo ʻana i ka genetic . Ua kapa ʻia kēia he hoʻāʻo microarray chromosome . Hana ʻia kēia e ʻike ai i nā loli liʻiliʻi loa i nā chromosomes o ke keiki. Hiki i kēia hoʻāʻo ke hoʻohana i kahi hāpana koko, kahi hāpana lawai, a i ʻole kahi swab papālina. Me ka hoʻohana ʻana i kēia hāpana, nānā nā kauka i ka DNA o ke keiki.

Inā hōʻoia kēia hoʻāʻo ua holoi ʻia kahi ʻāpana kikoʻī o ka chromosome 4, ʻo ia hoʻi ka ʻāpana i kapa ʻia ʻo 4p16.3, ua ʻike ʻia ke keiki me ka Wolff-Hirschhorn syndrome.

He aha kāu e hana nei ma ke ʻano he lāʻau lapaʻau?

No ka mea, he maʻi hoʻoilina ka Wolff-Hirschhorn syndrome, ʻaʻohe lāʻau lapaʻau i kēia manawa . Eia naʻe,Aia kekahi mau ʻano lapaʻau like ʻole e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona a kōkua i ke keiki e ola maikaʻi loa. Hoʻolālā ʻia ka lāʻau lapaʻau ma muli o nā hōʻailona kikoʻī o kēlā me kēia keiki.

ʻO nā lāʻau lapaʻau nui penei:

• ʻOki: Pono paha ke ʻoki ʻana e hoʻoponopono i kekahi mau mea ʻē i ka ulu ʻana o ka pēpē, ʻoiai nā pilikia o ka puʻuwai (e like me ka hemahema septal atrial).
• Hoʻōla kino a i ʻole ka hoʻōla hana: Kōkua kēia mau lāʻau i ka hoʻomohala ʻana i ka ikaika o ka ʻiʻo, mālama i ke kaulike, a hoʻomaʻamaʻa iā ʻoe e hana i nā hana o kēlā me kēia lā me ke kūʻokoʻa.
• Nā papahana hoʻonaʻauao kūikawā: Hoʻohana ʻia nā papahana a me nā hoʻolālā hoʻonaʻauao kūikawā e kōkua i ka ulu ʻana o ka noʻonoʻo o ke keiki a me kona hiki ke aʻo.
• Lāʻau lapaʻau: Hāʻawi ʻia ka lāʻau lapaʻau e kāohi i nā maʻi ʻōhū.

Ma waho aʻe o kēia mau mea a pau, hiki ke lilo i mea maikaʻi loa no kou ʻohana ke loaʻa i ke aʻo ʻana no nā ʻano genetic . Hiki i nā kākāʻōlelo genetic ke kōkua iā ʻoe e hoʻomaopopo maikaʻi i ke kūlana o kāu keiki, a me ke aʻo ʻana iā ʻoe i ke ʻano o ke kākoʻo ʻana i kāu keiki a me nā pilikia e kū mai ana iā lākou i ka wā e hiki mai ana.

He aha ke ʻano o nā loea e pono ai iaʻu e ʻimi i ka lāʻau lapaʻau mai?

Pono ke keiki me ka maʻi Wolff-Hirschhorn e ʻike i nā ʻano loea like ʻole i ko lākou wā kamaliʻi. ʻO kēia ke nānā ʻana i ko lākou olakino a pehea e hoʻopilikia ai nā hōʻailona i ko lākou ola. Ma hope o ka hōʻoia ʻana, pono pinepine lākou i nā hoʻokolohua maʻamau a me nā ʻōlelo aʻoaʻo mai nā loea e like me:

• Neurologist: Nānā i ka hana o ka lolo a me nā kūlana e like me ka hopu ʻana.
• Kauka Puʻuwai: Nānā i nā pilikia o ka puʻuwai.
• Kauka Niho: E makaʻala mau i ke olakino o kou mau niho.
• Kauka maka: Nānā i nā pilikia ʻike maka.

Hiki i kāu mea mālama ola mua, a i ʻole ke kauka ʻohana, ke ʻōlelo aku i nā hoʻāʻo koko maʻamau e nānā i nā mea e like me ka hana puʻupaʻa o kāu keiki i ka wā o nā nānā makahiki.

Aia kekahi ala e pale aku ai i kēia kūlana?

E like me kā mākou i kūkākūkā ai ma mua, ʻo ka maʻi Wolff-Hirschhorn ka hopena pinepine o kahi hoʻololi genetic "de novo" hou . No laila, ʻaʻohe ala e pale aku ai i kēia kūlana mai ka hanana ʻana. Eia nō naʻe, i nā hihia kakaikahi, hiki i kekahi mau keiki ke hoʻoilina i ke kūlana mai ko lākou mau mākua. Inā he moʻolelo ʻohana kou o nā maʻi genetic, a inā makemake ʻoe e ʻike e pili ana i ka pilikia o kāu keiki e hoʻoilina i kahi kūlana genetic, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka e pili ana i ka hoʻāʻo genetic a me ke aʻo ʻana i ka genetic .

Inā loaʻa i kahi keiki ka Wolff-Hirschhorn syndrome, he aha ka mea hiki ke manaʻo ʻia?

ʻOiai ʻaʻohe lāʻau lapaʻau no ka Wolff-Hirschhorn syndrome i kēia manawa, hiki i ka mālama ʻana i nā hōʻailona o ke keiki ke alakaʻi i nā hopena maikaʻi a hāʻawi i ke kākoʻo e pono ai lākou e ola i kahi ola hauʻoli a olakino hoʻi.

ʻO ka wānana no kekahi me kēia maʻi e pili ana i ke koʻikoʻi o kā lākou mau hōʻailona . ʻO nā hōʻailona, ​​ʻoiai nā mea e pili ana i ka puʻuwai a me ka lolo, hiki ke hoʻopōkole i ka manaʻolana o ke ola. Eia nō naʻe, me ka mālama pono ʻana a me ka mālama ʻana, nui nā keiki i hānau ʻia me kēia maʻi e ola a hiki i ka wā makua .

Āhea ʻoe e ʻike ai i ke kauka?

Inā loaʻa i kāu keiki kekahi o kēia mau hōʻailona, ​​e ʻike koke i ke kauka:

• ʻO kahi ʻeha i ho'ōla ʻole ʻia (inā ua lilo ka ʻeha i ʻōpala a ke kahe nei i ka wai moakaka a melemele paha e like me ka pus).
• Nā maʻi pinepine e like me ke anu (kuni, ʻū, ʻeha puʻu) a me ko lākou hiki ʻole ke ho'ōla maʻalahi.
• Nā pae hoʻomohala i lohi.
• ʻAʻole ʻai mau.
• Ka puʻuwai kūpono ʻole, ka pōkole o ka hanu, a i ʻole ka luhi nui (he mau hōʻailona paha kēia o kahi maʻi puʻuwai e like me ke kīnā septal atrial).

Nā kūlana i ka wā e pono ai ke ʻimi i ka mālama ulia pōpilikia

Aia kāu keiki me ka Wolf-Hirschhorn syndrome i ka pilikia o ka loaʻa ʻana o nā hopu . Inā loaʻa kahi hopu, hiki i ke keiki ke loaʻa i kēia mau mea:

• Ka nalowale ʻana o ka ʻike no ka manawa pōkole ma waena o 30 kekona a me ʻelua mau minuke.
• Ka haʻalulu ʻana o nā lālā i kāohi ʻole ʻia (nā ʻōhūhū).

Inā loaʻa kekahi mea e like me kēia, e kelepona koke i ka 1990 a i ʻole e lawe i ke keiki i ka Emergency Treatment Unit (ETU) kokoke loa.

Nā nīnau koʻikoʻi e nīnau aku i kāu kauka

Hiki ke paʻakikī loa ka ʻike ʻana he maʻi hoʻoilina ko kāu keiki e like me ka Wolf-Hirschhorn syndrome. Eia nō naʻe, he mea nui e kūkākūkā i nā nīnau a hopohopo paha āu e loaʻa ai me kāu kauka i kēia manawa. Hiki iā ʻoe ke nīnau i nā nīnau e like me:

• Aia kekahi hopena ʻaoʻao i ka lāʻau i kuhikuhi ʻia no ke keiki?
• Pehea ke koʻikoʻi o ke kūlana o kaʻu keiki?
• He aha kaʻu e hana ai inā ua lohi kaʻu keiki i ka hiki ʻana i nā pae hoʻomohala?
• Pono anei kaʻu keiki e ʻike i nā loea ʻē aʻe?
• Hiki iā mākou ke loaʻa i ke aʻoaʻo hoʻoilina? He aha ke kōkua e hāʻawi mai ai iā mākou?

ʻO ka mea hope loa, nā mea e pono ai ʻoe e hoʻomanaʻo

ʻO ka ʻike ʻana he maʻi genetic kāu keiki e like me ka Wolf-Hirschhorn Syndrome hiki ke lilo i mea paʻakikī. Akā e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi. ʻOiai hiki i nā hōʻailona o kēia maʻi ke hoʻololi i ke ola, e hāʻawi kāu kauka iā ʻoe i kahi hoʻolālā lapaʻau. A, e hana pū ana me nā loea ʻē aʻe, e kōkua lākou i kāu keiki e ola i kahi ola hauʻoli a olakino.

ʻO ka mea nui loa, ʻo ia ka ʻike pono ʻana i ke kūlana o kāu keiki a hāʻawi iā ia i ke kākoʻo e pono ai. ʻO ka loaʻa ʻana o ke aʻoaʻo genetic e hāʻawi pū iā ʻoe i ka ikaika nui ma kēia huakaʻi. E kū i kēia pilikia me ka makaʻu ʻole, me ka noʻonoʻo ikaika. Makemake mākou iā ʻoe a me kāu keiki i ka pōmaikaʻi maikaʻi loa!

ʻO ka Wolf-Hirschhorn Syndrome, nā maʻi genetic, nā chromosomes, chromosome 4, 4p- syndrome, lohi o ka ulu ʻana, nā hiʻohiʻona helehelena, nā hopu ʻana, ke aʻo ʻana i nā genetics