He mau māhoe kāu? Ua ʻike anei ʻoe i kēia ʻano weliweli? (Twin-to-Twin Transfusion Syndrome - TTTS)

Inā he makuahine e hāpai ana ʻoe i nā māhoe, ʻo ka mea mua, hoʻomaikaʻi! Eia nō naʻe, he mea nui hoʻi e makaʻala i nā kūlana kūikawā e hiki ke loaʻa i kekahi manawa i nā hāpai māhoe. ʻO kekahi o ia ʻano kūlana i manaʻo ʻole ʻia akā pono e ʻike e pili ana iā ia ʻo Twin-to-Twin Transfusion Syndrome , i ʻike ʻia hoʻi ʻo TTTS no ka pōkole. Mai hopohopo, e kamaʻilio maʻalahi kākou e pili ana.

He aha ka Twin-to-Twin Transfusion Syndrome (TTTS)? I ka ʻōlelo maʻalahi...

E noʻonoʻo e kaʻana like nā māhoe ʻelua i loko o kou ʻōpū i ka placenta hoʻokahi . Kāhea mākou i kēia mau māhoe (māhoe monochorionic) . ʻO ka maʻamau, loaʻa i nā pēpē ʻelua ke koko like a me nā meaʻai mai kēia placenta. Eia naʻe, i kēia hihia (TTTS), ʻaʻole hana pono kēlā mahele ʻana.

I ka ʻōlelo maʻalahi, ʻaʻole lawa ke koko o kekahi pēpē (e kapa kākou iā ia ʻo ka 'māhoe hāʻawi' ) mai ka placenta. Loaʻa i kekahi pēpē (e kapa kākou iā ia ʻo ka 'māhoe loaʻa' ) ka nui loa. ʻO kēia kaulike ʻole o ke kahe koko ke kumu o ka TTTS. He kūlana kakaikahi kēia akā he mea koʻikoʻi paha. He mea nui ka nānā pono ʻana e kahi loea Maternal-Fetal Medicine (MFM) . Hiki i ka ʻike mua ʻana, ka nānā ʻana, a me ka mālama ʻana ke alakaʻi i nā hopena maikaʻi aʻe no nā pēpē ʻelua.

He aha ka mea e hana ʻia i ka 'māhoe hāʻawi'?

Ke emi nei ke koko o ka pēpē mai ka placenta. No laila, ua emi pū ka nui o ke koko i loko o kona kino. Hiki i kēia ke kumu i ka ulu lohi ʻana o ka pēpē, a hiki ke emi iho ka nui o ka wai amniotic a puni iā ​​​​ia. ʻO kēia no ka mea ʻaʻole i mimi ka pēpē. ʻO kēia no ka mea ua hana nui ʻia ka wai amniotic mai ka mimi o ka pēpē. Ke emi ka wai amniotic, hiki i ka ʻeke e paʻa ana i ka pēpē ke emi, a nalowale paha. He mea weliweli kēia, no ka mea, ʻaʻole hiki i ka pēpē ke neʻe pono, a hiki ke ʻūlū ʻia ke kaula umbilical.

He aha ka mea e hana ʻia i ka 'māhoe loaʻa'?

Ke loaʻa nei i kēia pēpē ke koko ma mua o ka mea e pono ai. Hoʻokau kēia koko keu i ka nui o ke kaumaha ma ka puʻuwai o ka pēpē, a hiki ke alakaʻi i ka hāʻule ʻana o ka puʻuwai . Ke nele ka meaʻai o ke kino o ka pēpē hāʻawi, pono ke kino o ka pēpē loaʻa e hana ikaika. No ka mea, pono kēia pēpē e hana i ke koko hou aku, mimi ʻo ia ma mua o ka maʻamau. ʻO ka hopena, lilo kāna ʻeke amniotic i mea nui loa.

ʻO wai ka mea e hoʻopilikia ai kēia kūlana (TTTS)?

Hoʻopilikia wale ʻo TTTS i nā hāpai ʻana i ka wā e kaʻana like ai nā māhoe i hoʻokahi placenta (monochorionic) , a like ke ʻano (nā māhoe like). ʻO ka hapa pinepine, ʻelua ʻeke amniotic kaʻawale o kēia mau māhoe me TTTS (diamniotic). Kāhea mākou i kēia mau māhoe (nā māhoe monochorionic diamniotic) .

Eia nō naʻe, he mea kākaʻikahi loa, aia nā hihia kahi e kaʻana like ai nā pēpē ʻelua i ka placenta like a me ka ʻeke amniotic (monoamniotic). I ia mau hihia, hiki ke loaʻa pū ʻo TTTS. Eia nō naʻe, he mea kākaʻikahi loa ia mau māhoe.

I ka wā hāpai, hiki ke loaʻa nā TTTS?

Hiki i kēia ʻano ke hoʻomaka e ulu i ka wā mua o 16 mau pule, akā hiki ke hana ʻia i kēlā me kēia manawa i ka wā hāpai.

Pehea ka maʻamau o (TTTS)?

Hiki ke hana ʻia ʻo TTTS ma kahi o 15% o nā hāpai māhoe monochorionic.

He aha nā hōʻailona o ka TTTS?

ʻAʻole ʻike ka hapa nui o nā makuahine me TTTS i kekahi mau hōʻailona kikoʻī. Eia nō naʻe, hiki i kekahi ke ʻike i kēia mau mea:

• Manaʻo e like me ka ulu wikiwiki ʻana o ka ʻōpū ma mua o ka mea i manaʻo ʻia.
• ʻO ka manaʻo o ka ʻeha a i ʻole ka paʻa ʻana o ka ʻōpū.
• Piʻi koke ke kaumaha.

Inā loaʻa iā ʻoe kēia mau hōʻailona, ​​​​pono ʻoe e ʻike koke i kāu kauka.

He aha ke kumu o TTTS?

ʻO ka maʻamau, i ka hāpai ʻana o nā māhoe me kahi placenta hoʻokahi, kaʻana like nā pēpē ʻelua i ka nui o ke koko mai ka placenta. Eia nō naʻe, ma TTTS, ʻo ke ʻano o ka pili ʻana o nā kīʻaha koko i loko o ka placenta ke kumu o ka māhele like ʻole ʻana o ke koko. Loaʻa i kekahi pēpē (ka pēpē loaʻa) ke koko hou aku, a ʻo kekahi pēpē (ka pēpē hāʻawi) e emi iho.

ʻAʻole hiki iā ʻoe ke kāohi i ke ʻano o ka ulu ʻana o ka placenta. He hanana kaulele ʻole ka (TTTS). ʻAʻole ia he mea āu i hana ai a i ʻole i hana ʻole ai. No laila, mai hoʻāhewa iā ʻoe iho. ʻAʻole hiki ke pale ʻia ka (TTTS).

ʻO wai ka mea i pilikia no (TTTS)?

ʻAʻohe pilina hoʻoilina a hoʻoilina paha o kēia. He hanana maʻamau ia. Eia nō naʻe, hiki ke hana wale ʻia kēia i nā hāpai māhoe e kaʻana like ana i hoʻokahi placenta (monochorionic) .

He aha nā pilikia e hiki ke loaʻa mai i ka TTTS?

Inā ʻaʻole mālama ʻia, a inā paha e ulu koke ke ʻano i ka wā hāpai, hiki i ka TTTS ke hoʻoulu i nā pilikia olakino koʻikoʻi no ka pēpē, a hiki ke make. No laila, he mea nui e ʻimi i ka lāʻau lapaʻau a i ʻole ka nānā pono ʻana mai kahi loea lapaʻau makuahine-fetal (loea MFM) a i ʻole kahi kikowaena mālama fetal. ʻOiai me ka mālama koke ʻana, aia ka pilikia o ka hāʻule ʻana.

ʻO nā pilikia ʻē aʻe e hiki ke hana pinepine me TTTS:

• Nā pilikia mai ka hānau mua ʻana (e like me nā pilikia hanu, nā pilikia o ka ʻōnaehana nerve).
• Hiki i ka māhoe loaʻa ke loaʻa i ka hāʻule ʻana o ka puʻuwai a i ʻole nā ​​​​pilikia puʻuwai ʻē aʻe ma muli o ka wai keu.
• Hiki i ka māhoe hāʻawi ke loaʻa ka lohi o ka ulu ʻana a i ʻole nā ​​​​pilikia puʻupaʻa.

Pehea e ʻike ʻia ai ka maʻi TTTS?

E ʻike kāu mea mālama maʻi prenatal i ka TTTS me kahi scan ultrasound . ʻO ka mea mua a ke kauka e ʻike ai ma ke scan, ʻo ia hoʻi he ʻelua mau māhoe like e kaʻana like ana i ka placenta hoʻokahi.

Inā kānalua ʻia ʻo TTTS, hiki i kāu kauka ke kuhikuhi iā ʻoe i kahi loea lapaʻau maternal-fetal (MFM specialist) no ka hoʻāʻo hou aku.Ma laila, e ʻike ka loea i hoʻokahi a ʻoi aku paha o kēia mau mea ma ka scan ultrasound:

• ʻO ka ʻokoʻa o ka nui ma waena o nā pēpē ʻelua.
• Loaʻa i kekahi pēpē ka nui o ka wai amniotic, aʻo ka pēpē ʻē aʻe he liʻiliʻi loa ka wai amniotic.
• Nā ʻano ʻē o ke kahe koko i nā pēpē (hiki ke ʻike ʻia kēia me ka hoʻāʻo ultrasound Doppler ).

I kekahi mau hihia, pono paha kahi hoʻāʻo MRI (magnetic resonance imaging) fetal a me kahi echocardiography fetal (echo) .

E nānā pono kāu hui mālama maʻi hāpai iā ʻoe i kou wā hāpai. Pono paha ʻoe e hana pinepine i nā scan ultrasound e loiloi i ke olakino o ka pēpē.

E nānā pū ke kauka i kou olakino. I kekahi manawa, ʻo ka nui o ka wai amniotic ma ka ʻaoʻao o ka mea loaʻa hiki ke hoʻonui i kou uterus a hoʻonāwaliwali i kou cervix. Hiki i kēia mau loli ke alakaʻi i ka hānau mua ʻana.

He aha nā pae o (TTTS)?

Loiloi kahi scan ultrasound i ke koʻikoʻi o ke kūlana (TTTS), ʻo ia hoʻi, ke kahua o ia kūlana. Hiki i ke kauka ke ʻike i ke ʻano o ka holomua ʻana o ke kūlana a paipai i nā koho lapaʻau maikaʻi loa.

ʻElima mau pae o TTTS:

• Pae 1: He kakaikahi loa a ʻaʻohe paha wai amniotic a puni ka pēpē hāʻawi. Nui pinepine ka wai amniotic a puni ka pēpē loaʻa.
• Pae 2: ʻAʻole ʻike ʻia ka ʻōpū mimi o ka pēpē hāʻawi ma ka ultrasound. ʻO ke ʻano kēia ua pau ka mimi maʻamau o ka pēpē hāʻawi.
• Pae 3: Aia kahi kaulike ʻole o ke kahe koko ma waena o nā pēpē. Hiki i kēia ke hoʻopilikia i ka hana o ka puʻuwai o hoʻokahi pēpē.
• Pae 4: Hōʻike kekahi a i ʻole nā ​​​​pēpē ʻelua i nā hōʻailona o ka pehu ʻana o ka ʻili a i ʻole ke kino.
• Pae 5: Ua make kekahi a i ʻole nā ​​pēpē ʻelua.

I ke kahua 1 (TTTS), ua lawa paha ka nānā ʻana wale nō. Eia nō naʻe, inā e ʻoi aʻe ka ʻino o ke kūlana, hiki ke hana koke ʻia. Ma hope o ke kahua 2 (TTTS), inā ʻaʻole i ʻoi aku kou hāpai ʻana ma mua o 26 mau pule, ua ʻōlelo pinepine ʻia ke ʻoki ʻana i ka fetal .

He aha nā lāʻau lapaʻau no (TTTS)?

Hoʻoholo ʻia ka lāʻau lapaʻau i ka lōʻihi o kou hāpai ʻana a me ke kahua o TTTS āu e noho nei.

• Nānā a me ka nānā ʻana: E nānā pono kāu kauka i kou hāpai ʻana me nā scan ultrasound. He koho kēia inā loaʻa iā ʻoe ke kahua 1 (TTTS) a inā he mau kumu i hiki ʻole ai ke ʻoki kino a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe.
• Septostomy: Pili kēia i ka hana ʻana i kahi lua liʻiliʻi i loko o ka membrane ma waena o nā ʻeke amniotic o nā pēpē ʻelua. Hiki i kēia ke hoʻohālikelike i ke kaomi ma nā ʻeke amniotic ʻelua. ʻAʻole kēia he mea weliweli, akā ʻaʻole ia e ho'ōla i ke kumu kumu o TTTS.
• Hoʻemi ʻana o ka ʻōpū:Ma kēia kaʻina hana, hoʻohana ke kauka i kahi nila liʻiliʻi a hakahaka e wehe i ka wai amniotic keu mai ka ʻeke o ka pēpē e loaʻa ana. Hiki i kāu kauka ke ʻōlelo aku i kēia ma ke kahua 1 (TTTS) a i ʻole i nā hihia koʻikoʻi o TTTS ma hope o ka hāpai ʻana. ʻAʻole mālama kēia kaʻina hana i ke kumu kumu o TTTS, no laila inā piʻi hou ka wai amniotic, pono paha e hana ʻia i nā manawa he nui.
• ʻO ka hoʻopau ʻana o ka laser fetoscopic: ʻO kēia kaʻina hana e pili ana i ka hoʻokomo ʻana i kahi kāmela liʻiliʻi (fetoscope) i loko o ka ʻōpū a me ka hoʻohana ʻana i kahi kukuna laser e pani i nā kīʻaha koko ma ka ʻili o ka placenta e hoʻoulu ai i ke kahe koko like ʻole ma waena o nā pēpē. ʻO ka pahuhopu o kēia kaʻina hana, ʻo ia ke hoʻololi i ke kahe koko mai kekahi pēpē a i kekahi, i loaʻa i kēlā me kēia pēpē nā nui koko kaʻawale. He koho kēia no ke kahua 2 a ʻoi aku paha (TTTS) a me nā hāpai ma waena o 16 a me 26 mau pule.
• ʻO ke pani ʻana o ke kaula umbilical: He hana hope loa kēia a kāu kauka e ʻōlelo ai i ka wā ʻaʻole hiki ke hoʻopakele ʻia nā pēpē ʻelua, a i ʻole ke kūlana hoʻoweliweli kekahi pēpē. Hoʻōki kēia ʻoki kino i ke kahe koko i kekahi pēpē, e hāʻawi ana i kekahi pēpē i ka manawa kūpono loa e ola ai.
• Ka hānau ʻana: Inā ua hala ka pēpē i ka makahiki hāpai kūpono, hiki i ke kauka ke ʻōlelo i ka hānau ʻana.

E kōkua kāu hui mālama ola iā ʻoe e koho i ka lāʻau lapaʻau kūpono loa iā ʻoe. E pane lākou i kāu mau nīnau a pau a kamaʻilio pū me ʻoe e pili ana i nā pilikia, nā pono, a me nā koho ʻē aʻe o kēlā me kēia koho lapaʻau.

Pehea e mālama ʻia ai nā TTTS?

E nānā pono kāu mea mālama ola kino, me kahi loea lapaʻau makuahine-fetus (loea MFM), i kou hāpai ʻana. E loaʻa iā ʻoe nā scan ultrasound maʻamau (malia paha i hoʻokahi a ʻelua paha i ka pule), a pono paha ʻoe e loaʻa kahi echocardiogram fetal i kou wā hāpai. E hāʻawi kāu hui mālama iā ʻoe i ke kākoʻo lapaʻau a me ka naʻau i kou wā hāpai.

He aha kaʻu e manaʻo ai inā ʻo kēia ke ʻano?

Aia ka hopena i ka lōʻihi o kou hāpai ʻana i ka wā i ʻike ʻia ai ʻoe a me ke koʻikoʻi o ke kūlana (pae). Me nā holomua i ka ʻepekema lapaʻau, hiki i ka nānā pono ʻana a me ka mālama mua ʻana ke hāʻawi i nā pēpē ʻelua i kahi manawa kūpono e ola ai. E kamaʻilio me kāu kauka e pili ana i nā mea i manaʻo ʻia a me nā hopena hiki ke hoʻomaopopo pehea e hoʻopilikia ai ʻo TTTS i kāu hāpai ʻana a me kāu pēpē. Pono nā māhoe he nui e ola nei e noho ma ka NICU (Neonatal Intensive Care Unit) no kekahi manawa pōkole ma hope o ka hānau ʻana e loaʻa ai ka hoʻomaka a lākou e pono ai.

(TTTS) hiki ke lilo i mea hoʻonāukiuki a kaumaha loa. E hoʻomanaʻo e mālama iā ʻoe iho a e ʻimi i ke kākoʻo mai kāu hui mālama ola, hoa, a me nā hoaaloha.

He aha ka helu ola ma (TTTS)?

Aia nā helu ola i ke koʻikoʻi o ka TTTS, i ka wā e ʻike ʻia ai ʻoe, a inā loaʻa iā ʻoe ka lāʻau lapaʻau. ʻO ka loaʻa ʻana o ka lāʻau lapaʻau kūpono hiki ke hana i kahi ʻokoʻa nui i kāu helu ola me TTTS:

• Ma kahi o 90% o nā māhoe i ʻike ʻia me ka TTTS koʻikoʻi i ka wā hāpai mua e pilikia ana i ka make ma mua o ka hānau ʻana (inā ʻaʻole i mālama ʻia).
• Ma waena o 85% a me 90% o nā hāpai ʻana i mālama ʻia (TTTS) e hopena i ka liʻiliʻi o hoʻokahi pēpē e ola ana.
• Ma waena o 50% a me 65% o nā hāpai ʻana i mālama ʻia (TTTS), ola nā pēpē ʻelua.

Ma muli o nā kumu he nui e pili ana i ke ola, e kamaʻilio me kāu hui mālama e pili ana i ka wānana o kāu pēpē.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu hui mālama ola?

ʻO kekahi mau nīnau hiki iā ʻoe ke nīnau:

• Pehea ka ʻokoʻa o koʻu hāpai ʻana mai ka hāpai māhoe me ka ʻole o (TTTS)?
• Pono anei au e ʻike i kahi loea? ʻO wai ka poʻe ma kaʻu hui mālama?
• ʻEhia mau manawa e pono ai iaʻu e hana i nā scan a i ʻole nā ​​​​hoʻokolohua ʻē aʻe?
• Pehea e pili ai (TTTS) i kaʻu mau hoʻolālā hoʻouna?
• E ʻike anei au i kekahi mau loli i koʻu kino ma muli o TTTS? Inā pēlā, he aha kaʻu e manaʻo ai?
• He aha ka lāʻau lapaʻau āu e ʻōlelo ai no koʻu maʻi? No ke aha mai?
• He aha nā ʻano nohona (e like me ka ʻai, ka hoʻoikaika kino, ka hoʻomaha, ka lāʻau lapaʻau) āu e ʻōlelo ai e kākoʻo i koʻu olakino?

He aha kēia 'Daisy Baby'?

ʻO 'Daisy baby' kekahi inoa ʻē aʻe no kahi pēpē me TTTS. Ua hoʻohana mua ka Twin-to-Twin Transfusion Syndrome (TTTS) Foundation i ka inoa. Ua puka mai ka inoa ma hope o ke kanu ʻana o kona mea hoʻokumu i nā hua daisy i loko o kā lākou māla me kāna mau keiki māhoe i ola. ʻO ka māla daisy kahi hōʻailona o ka manaʻolana e ola nā pēpē a pau e ʻeha nei i ka TTTS.

ʻO ka mea hope loa, ʻo ka mea nui loa! (Leka Lawe-Home)

ʻO ka loaʻa ʻana o kahi hōʻailona o ka Twin-to-Twin Transfusion Syndrome (TTTS) hiki ke lilo i mea weliweli. He mea maʻamau ka makaʻu a me ka hopohopo e pili ana i ka mea e hiki mai ana no ʻoe a me kāu mau māhoe. E kamaʻilio me kāu kauka e pili ana i nā koho lapaʻau maikaʻi loa no kou kūlana. E ʻimi i ke kākoʻo mai nā hoaaloha a me ka ʻohana i ka holomua ʻana o kou hāpai ʻana. ʻO ka hui pū ʻana me kahi hui kākoʻo no nā ʻohana i loaʻa iā TTTS hiki ke lilo i ala maikaʻi loa e kōkua iā ʻoe ma kēia huakaʻi. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Me ka ʻōlelo aʻoaʻo lapaʻau kūpono a me ke kākoʻo, hiki iā ʻoe ke kū i kēia pilikia!

ʻO ka maʻi hoʻoili ʻana o nā māhoe a i ʻole nā ​​māhoe, TTTS, māhoe, hāpai keiki, placenta, wai amniotic, monochorionic