Makemake ʻoe e ʻike e pili ana i ka Amniotic Band Syndrome, kahi kūlana weliweli kahi e ʻōwili ʻia ai nā kāʻei a puni kāu pēpē?

Manaʻo mau ʻoe i ke olakino o kāu pēpē i ka wā hāpai, ʻeā? I kekahi manawa, ke ʻike ʻoe i kahi mea liʻiliʻi i ka wā o ka scan, makaʻu loa ʻoe. Pēlā ka hopohopo o ka nui o nā makuahine, akā inā ʻike pono ʻia ʻoe, hiki ke mālama ʻia kēia ʻano i kapa ʻia ʻo amniotic band syndrome. E kamaʻilio maʻalahi kākou e pili ana i ia mea, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.

He aha ka Amniotic Band Syndrome?

I ka ʻōlelo maʻalahi, hana ʻia kēia i ka wā e ʻōwili ai nā kaula lahilahi o ka wai mai ka ʻeke amniotic (ka mea a mākou e kapa nei ʻo "Amniotic Sac") e hoʻopuni ana i ka pēpē i loko o ka ʻōpū a puni ke kino o ka pēpē. E noʻonoʻo i ka pēpē e like me ka pōpō i piha i ka wai. Inā hōʻino ʻia ka membrane palupalu i loko o ka amnion ma kekahi ʻano, hiki iā ia ke haki i loko o nā ʻāpana like me ke kaula a i ʻole ke kaula a lana a puni i loko o ka ʻeke amniotic. ʻO kēia ka mea a mākou e kapa nei he "Amniotic Bands". Hiki i kēia mau kaula lana, e like me ka pōpō kaula, ke hihia a puni ka lima, ka wāwae, ka manamana lima, a i ʻole kekahi ʻāpana o ke kino o ka pēpē i loko o ka ʻōpū. Inā hihia paʻa kēia mau kaula, ua emi ke kahe ʻana o ke koko i kēlā ʻāpana, i kekahi manawa ua pau loa. A laila ʻaʻole ulu pono kēlā ʻāpana. I kekahi manawa hiki i kēia ke hoʻopilikia i nā ʻōpū o loko o ka pēpē a me ke kaula umbilical. Hiki i kēia ke alakaʻi i nā kīnā hānau (Congenital Disorders) a, i nā hihia koʻikoʻi, ka ʻoki ʻana. ʻO ke koʻikoʻi o ke kūlana e pili ana i ka paʻa o ke kaula a me kahi o ke kino o ka pēpē i ʻōwili ʻia ai. Hiki i kekahi mau pēpē ke loaʻa wale nā ​​ʻili liʻiliʻi a paʻa i ka wā hānau. Eia nō naʻe, hiki i kekahi mau pēpē ke hānau ʻia me ka ʻole o nā lima, nā wāwae, a i ʻole nā ​​manamana lima. Inā ʻoki kēia mau kāʻei i ke kahe koko o ka pēpē mai ka placenta, hiki ke hoʻoweliweli i ke ola. I kekahi manawa hiki i nā kauka ke ʻike i ke kūlana me kahi scan ultrasound i ka wā hāpai. Eia naʻe, i ka hapa nui o ka manawa, ʻaʻole i hōʻoia ʻia kēia a hiki i ka wā i hānau ʻia ai ka pēpē. ʻAʻole maʻamau loa kēia kūlana. Loaʻa ia ma kahi o 1 i loko o 1,200 a 15,000 mau hānau ola. Ua ʻike ʻia hoʻi ʻo ia:

• Kaʻina o ke kāʻei Amniotic
• ʻO ka maʻi ʻeha o ke kāʻei/apo
• Ka Paʻakikī Hoʻopilikia ʻana o ke Kāʻei Amniotic
• Nā Kāʻei/Apo Hoʻopaʻa Hānau
• ʻO ka paʻakikī ADAM `(ʻO ka paʻakikī ADAM - nā kīnā Amniotic / nā hoʻopili / nā ʻokiʻoki)`
• ʻAnomaly Streeter

He aha nā hōʻailona o kēia? Pehea e ʻike ai?

ʻO nā hōʻailona o kēia maʻi e hilinaʻi nui ʻia ma kahi o ke kino o ke pēpē i hihia ai ke kaula a me ke ʻano o kona paʻa ʻana.Ma kahi o 80 pakeneka o nā hihia e pili ana i nā lima a me nā wāwae. Akā hiki i kēia mau kāʻei ke hihia i ke poʻo, ka ʻāʻī, a me ka ʻōpū. I kekahi manawa ʻaʻole koʻikoʻi loa kēia. Hoʻemi wale ia i ke kahe koko i ka ʻili o ka ʻili. A laila i ka wā e hānau ai ke pēpē, aia paha nā mea e like me nā apo constriction i loko o ka ʻili, a i ʻole nā ​​​​​​deformities liʻiliʻi i nā lālā. Akā i kekahi manawa ua hihia kēia mau kāʻei me ka paʻa a me ka hohonu a ua ʻoki loa ʻia ke kahe koko i kēlā ʻāpana a i ʻole ke kino. A laila hiki ke nalowale kēlā ʻāpana, nalowale ke kahe koko, a i kekahi manawa hiki ke loaʻa nā pilikia e hoʻoweliweli ai i ke ola. ʻO nā hōʻailona ʻē aʻe e ʻike ʻia ma kēia kūlana:

• ʻO ka hānau ʻia ʻana me ka ʻole o nā lima, nā wāwae, a me nā manamana lima.
• Nā manamana lima i hoʻopaʻa ʻia (Syndactyly). Aia paha he ʻili ma waena o nā manamana lima, e like me ko ka ʻiole.
• He pōkole nā ​​​​lālā a ʻaʻole i ulu pono.
• Ka pehu ʻana ma kahi i hihia ai nā kaula.
• Ka wāwae kalapu
• Lehelehe Māwae a me ka Lehelehe Māwae .
• Nā ʻano ʻino o ka iwi, e like me ka scoliosis.
• ʻO Choanal Atresia (ka ulu piha ʻole ʻana o nā puka ihu). Hiki i kēia ke paʻakikī i ka pēpē ke hanu.
• Nā maka liʻiliʻi loa a i ʻole ʻaʻole i ulu pono (Microphthalmia).

He aha nā pilikia e hiki ai i kēia ke hana?

Hiki i ka maʻi Amniotic band syndrome ke hana i kekahi mau pilikia, a hiki i kekahi o ia mau mea ke ola a pau. He koʻikoʻi loa kekahi mau pilikia a hiki ke hoʻoweliweli i ke ola. Eia kekahi laʻana:

• Nā lua i loko o ke poʻo (Encephalocele). I kēia hihia, hiki i kahi ʻāpana o ka lolo ke puka i waho ma o ke poʻo.
• Nā lua a i ʻole nā ​​kīnā ma nā paia o ka ʻōpū a i ʻole ka umauma.
• Ka hōʻino ʻana i nā ʻōnaehana koʻikoʻi e like me ka ʻōnaehana gastrointestinal a i ʻole ka ʻōnaehana genitourinary .
• Nā pilikia e hiki ke loaʻa inā hihia kēia mau kaula i loko o ke kaula umbilical a ālai i ke kahe koko o ka pēpē.

ʻO kēia maʻi ke kumu pinepine o ka hānau mua ʻana o ka pēpē. ʻO ka hānau mua ʻana he mau pilikia ponoʻī. Aia kekahi pilikia o ka hāʻule ʻana a i ʻole ka hānau make ʻana. Pono paha nā keiki me kēia maʻi i ka hoʻōla kino a me ka hoʻōla hana no nā makahiki, a hiki i ko lākou hoʻomaʻamaʻa ʻana i nā pilikia o ka nalowale ʻana o nā lālā a i ʻole ka ulu ʻana o ka ulu.

No ke aha e kū mai ai ka amniotic band syndrome (ABS)? He aha nā kumu?

Ua hōʻike ʻia he nui nā haʻawina ʻaʻohe kumu maopopo a kikoʻī no kēia.Ua manaʻo nui ʻia ua hana ʻia e ka hōʻino ʻana i ka papa o loko o ka amnion (ka ʻeke wai e hoʻopuni ana i ka pēpē). ʻO kekahi o nā kumu hiki ke hōʻino ʻia i kēia ʻeke wai:

• Hana ʻia kekahi mau hoʻokolohua i ka wā hāpai , e like me Chorionic Villus Sampling (CVS) a i ʻole Amniocentesis. Pili kēia i ka hou ʻana i ka ʻeke wai me kahi nila a lawe i kahi hāpana o ka wai a i ʻole ka ʻiʻo mai ka pēpē. Eia nō naʻe, he mea kakaikahi loa kēia mau hoʻokolohua e hōʻeha.
• ʻO ke ʻoki kino hāmama o ka ʻōpū: Hana ʻia kēia i nā hihia koʻikoʻi loa a hoʻoweliweli i ke ola.

Eia nō naʻe, i kekahi mau hihia o ka amniotic band syndrome, ʻaʻole i hōʻino iki ʻia ka ʻeke wai. No laila, manaʻoʻiʻo kekahi poʻe loea he pilikia kēia me ke kahe koko i loko o ke kino o ka pēpē. Malia paha ʻoi aku ka nui o ka pilikia o kekahi mau pēpē i ke kahe koko maikaʻi ʻole ma muli o ka mana genetic.

ʻO wai ka mea i pilikia nui no kēia maʻi?

ʻOi aku ka kiʻekiʻe o kou manawa e loaʻa ai kahi pēpē me kēia kūlana inā ʻoe:

• Inā he mau pilikia ʻē aʻe kāu i ka wā hāpai.
• Inā loaʻa iā ʻoe kahi maʻi i kapa ʻia ʻo `(Vascular Ehlers-Danlos Syndrome)`.
• Inā ʻoe e puhipaka i ka wā hāpai.
• Inā ʻoe e hoʻohana ana i nā lāʻau lapaʻau i kuhikuhi ʻole ʻia iā ʻoe me ka ʻole o ka ʻōlelo aʻoaʻo lapaʻau, a inā paha ʻoe e lawe ana i kekahi mau lāʻau lapaʻau i ka wā hāpai.

Pehea ʻoe e ʻike pono ai i kēia?

Hoʻomaopopo pinepine ke kauka i kēia kūlana ma hope o ka hānau ʻana o ka pēpē, i ka wā e nānā ai i ka pēpē. Akā i kekahi manawa, hiki ke ʻike ʻia nā hōʻailona o kēia i ka wā o ka ultrasound scan i ka wā hāpai. Hiki i ka scan ke hōʻike i nā laina i hoʻokumu ʻia e nā kaula paʻa. Akā ʻoi aku ka pinepine, hōʻike ka scan ua nalowale nā ​​​​lālā, a i ʻole ʻaʻole i ulu pono nā ʻāpana o ke kino.

Pehea ka wikiwiki e ʻike ʻia ai kēia ma kahi scan?

Hiki ke ʻike ʻia nā hōʻailona o ka amniotic band syndrome i kekahi manawa i ka wā o 12 mau pule o ka hāpai ʻana, akā he mea paʻakikī loa ia. ʻO ka hapa nui o ka manawa, e ʻike kāu kauka i nā hōʻailona o kēia i ka wā o kahi scan anatomy, kahi i hana ʻia ma kahi o 20 mau pule. Inā he kānalua, hiki i kāu kauka ke kauoha i nā hoʻokolohua hou aʻe, e like me ka MRI (Magnetic Resonance Imaging).

He aha nā lāʻau lapaʻau no kēia?

Hana pinepine ʻia ka lāʻau lapaʻau ma hope o ka hānau ʻana o kāu pēpē. Aia ke ʻano o ka lāʻau lapaʻau ma kahi o ke lipine a me kona paʻa. I nā hihia palupalu, ʻo ka nānā pono ʻana e ke kauka paha ka mea e pono ai.Akā inā koʻikoʻi ke kūlana e hoʻopilikia i nā manaʻo o ka pēpē, pono e mālama koke ʻia. I kekahi manawa hiki i ke ʻoki kino ke hoʻoponopono i nā pilikia e like me ka wāwae kalapu, ka lehelehe māwae a me ka palate, a me ka syndactyly. Hiki i nā pēpē a me nā keiki me nā lālā nalowale a pōkole paha ke pōmaikaʻi mai nā prosthetics. Hiki i ka hoʻōla kino a me ka hoʻōla hana ke kōkua iā lākou e hoʻohana i kēia mau lālā hana a hoʻomaikaʻi i kā lākou hana holoʻokoʻa.

He mea kākaʻikahi loa, hiki i ke kauka ke hana i kahi kaʻina hana i kapa ʻia he fetoscopy e wehe i ka ʻeke amniotic ʻoiai ke pēpē i loko o ka ʻōpū. ʻO ka pahuhopu o kēia ʻoki ʻana, ʻo ia ke hoʻokuʻu i ka ʻeke paʻa a pale i ka hōʻino hou aʻe. Eia nō naʻe, hiki i kēia kaʻina hana ke hoʻopilikia nui i ke olakino i ka makuahine a me ka pēpē. Hana pinepine ʻia kēia i ka wā e paʻa loa ai ka ʻeke a hiki ke hoʻoweliweli i ke ola.

Hiki i ke pēpē ke ola me kēia maʻi?

ʻAe, nui nā pēpē e ola nei me kēia maʻi. Inā ola lākou a ʻaʻole paha, pili ia i nā mea e like me kahi o nā kaula a me ke ʻano o ko lākou paʻa.

Ke nalowale aku nei kēia mau kaula amniotic?

ʻAʻole. I ka hapanui o nā hihia , ʻaʻole e nalowale nā ​​​​​​ʻūlū a i ʻole nā ​​​​​​palapala i hana ʻia e nā kāʻei amniotic. Aia kēia i ka hohonu o ke komo ʻana o nā kāʻei i loko o ka ʻili. E nīnau i kāu kauka e pili ana i nā lāʻau lapaʻau hiki no kēia ʻano ʻōpala.

Aia kekahi ala e pale aku ai i kēia?

ʻAʻohe ala kikoʻī e pale aku ai i ka amniotic band syndrome. Manaʻo nā kauka he hana maʻamau ia i ka hapa nui o ka manawa, me ke kumu ʻole.

He aha kā mākou e noʻonoʻo ai e pili ana i kēia kūlana i ka wā e hiki mai ana? (Outlook)

No nā pēpē me ka ABS palupalu, maikaʻi ka nānā ʻana. ʻO nā pēpē i hānau ʻia me kekahi mau ʻano ʻē o nā lālā e hoʻomaʻamaʻa maikaʻi i nā prosthetics a me nā papahana hoʻōla. Eia nō naʻe, ʻo nā pēpē me ka hōʻino nui o nā kino a me ke kahe koko palena ʻia ma o ke kaula umbilical ʻaʻole lākou e ola. Ma kahi o 1 i loko o 70 mau hānau make ma muli o ka amniotic band syndrome.

He aha kāu e hana ai inā loaʻa i kāu pēpē ka amniotic band syndrome?

Pono nā keiki me kēia maʻi i ke kākoʻo ikaika a me ka mālama lōʻihi.Pono nā mākua, nā ʻohana, a me nā kauka e hana pū e kōkua i kāu keiki e hoʻomaʻamaʻa i nā loli o ke ʻano a me nā pilikia hana e lawe mai ai kēia maʻi. Pono paha kāu keiki e ʻike i nā ʻano loea like ʻole. No ka laʻana, nā kauka ʻokiʻoki orthopedic a me nā neurologists (ma muli o nā ʻāpana o ke kino i hoʻopilikia ʻia). Hiki i nā ʻohana a me nā kaikaina ke loaʻa ke kākoʻo i nā hui kākoʻo no nā ʻohana me nā keiki me kēia maʻi. Ke ʻike ʻoe ua loaʻa i kāu pēpē ka amniotic band syndrome, nui paha kāu mau nīnau a me nā makaʻu. ʻO ka mea mua, e hoʻomanaʻo aia kāu hui lapaʻau ma laila e kōkua iā ʻoe a me kāu pēpē, e mālama pono iā ʻoe. ʻO ke ʻano pololei o kou kūlana e pili ana i ke ʻano o ka paʻa o nā kāʻei a me ko lākou wahi. ʻO ia hoʻi, pono ʻoe e loaʻa nā scan ultrasound pinepine i kou wā hāpai. A i ʻole pono paha ʻoe i ke ʻoki ʻana ma hope o ka hānau ʻana o ka pēpē, ka hoʻoponopono lōʻihi, a i ʻole ka hoʻohana ʻana i nā lālā hana e hoʻihoʻi i ka hana. Mai makaʻu e kamaʻilio me kāu kauka antenatal clinic a i ʻole ka hui lapaʻau o kāu pēpē e pili ana i kēia hōʻailona a pehea e hoʻopilikia ai i kou ʻohana.

Leka Hoʻihoʻi Hope Loa

He mea weliweli loa ka Amniotic Band Syndrome, akā he mea nui loa ia e ʻike i ia mea.

• He kūlana kākaʻikahi loa kēia.
• ʻO ka hapa nui o ka manawa, hana ulia kēia, ʻo ia hoʻi, ʻaʻole ia he hewa o kekahi.
• He nui nā pēpē i hānau ʻia me kēia maʻi e ola maikaʻi me ka mālama olakino maikaʻi a me ke kākoʻo ʻohana.
• Inā hiki ke ʻike ʻia kēia i ka wā hāpai, e kōkua ia i ka hoʻolālā ʻana i ka lāʻau e pono ai no ka pēpē.
• Inā he kānalua a nīnau paha kāu, e kamaʻilio me kāu kauka. E hāʻawi lākou iā ʻoe i ka ʻike a me ke kākoʻo āpau āu e pono ai. Mai hopohopo, ʻaʻole ʻoe hoʻokahi.