ʻEctopia Cordis: ʻO ka mea e pono ai ʻoe e ʻike e pili ana i ke kūlana laha ʻole kahi e waiho ai ka puʻuwai o kahi pēpē ma waho o ke kino

I ke kamaʻilio ʻana me ke kauka i ka wā hāpai, i kekahi manawa e hālāwai mākou me nā huaʻōlelo a mākou i lohe ʻole ai, a i ʻole nā ​​​​​​kūlana olakino kakaʻikahi. He mea maʻamau ka manaʻo nui i ka makaʻu a me ka hopohopo i kēlā mau manawa. I kēia lā e kamaʻilio mākou e pili ana i kekahi kīnā hānau kakaʻikahi a koʻikoʻi. Kāhea mākou i kēia kūlana ʻo Ectopia Cordis. Mai makaʻu i kou lohe ʻana i kēia. E hoʻomaopopo maʻalahi kākou i nā mea āpau e pili ana i kēia, pākahi.

He aha ka Ectopia Cordis?

I ka ʻōlelo maʻalahi, ʻo Ectopia Cordis ka wā e hānau ʻia ai kahi pēpē me ko lākou puʻuwai āpau a i ʻole kekahi hapa ma waho o ko lākou kino. He maʻi laha ʻole kēia. E noʻonoʻo wale, ʻike ʻia kēia maʻi i loko o ʻewalu wale nō o ka miliona mau pēpē i hānau ʻia ma ka honua holoʻokoʻa.

No ka mea he maʻi koʻikoʻi loa kēia, nui nā pēpē i hānau ʻia me Ectopia Cordis e make ana i loko o ka ʻōpū a i ʻole i loko o ʻekolu lā o ka hānau ʻana. Eia nō naʻe, aia kahi ʻaoʻao manaʻolana i kēia moʻolelo. Ua hiki i nā hui lapaʻau akamai o nā kauka, nā kahu maʻi, nā physiotherapists a me nā loea ʻē aʻe ke mālama i kekahi mau pēpē i hānau ʻia me kēia maʻi no nā pule, a i kekahi manawa he mau makahiki.

He aha ke kumu o kēia?

ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa i nā loea kahi kumu kūpono no kēia, akā he mau manaʻo ko lākou.

• Nā pilikia ulu: ʻO kekahi manaʻo, ʻoiai ke ulu nei ka pēpē i loko o ka ʻōpū , loaʻa nā loli kino e hoʻopilikia i ka ulu maʻamau o ka pēpē. No ka laʻana, hana ʻia nā kaula fibrous i loko o ka ʻeke piha wai (ʻeke amniotic) e hoʻopuni ana i ka pēpē, hiki ke kāohi i ka ulu ʻana o ka pēpē.
• Pilikia ka ulu ʻana o ka umauma: ʻO kekahi manaʻo ʻē aʻe, ʻaʻole e ulu pono ana ka umauma o ka pēpē. Pale kēia i ka neʻe ʻana o ka puʻuwai i kona wahi kūpono i loko o ka umauma. Hiki i kēia ke alakaʻi i ka Ectopia Cordis a me nā kīnā puʻuwai ʻē aʻe.
• Pili me nā maʻi ʻē aʻe: ʻIke pinepine ʻia ʻo Ectopia cordis me nā kīnā hānau ʻē aʻe e kū mai ana ma ka laina waena o ke kino. No ka laʻana, pili ia me nā kīnā ma ka sternum, pericardium, a me ka paia ʻōpū. Hiki ke pili pū me nā kūlana chromosomal e like me Trisomy 18 a me Turner syndrome.
• Nā kumu hoʻoilina : ʻO kekahi manaʻo hou, ʻo ia ka nele o kekahi mau fetuses i kahi gene kikoʻī i kapa ʻia ʻo ``(BMP2)''. He mea nui kēia gene no ka ulu kūpono ʻana o ka puʻuwai a me ke alo o ka umauma. No laila, manaʻoʻiʻo lākou he kumu paha kona hemahema.

He aha nā hōʻailona e hiki ke ʻike ʻia?

ʻO ka hōʻailona nui a maopopo loa o Ectopia Cordis, aia ka puʻuwai ma waho o ke kino. Eia nō naʻe, hiki i kēia mau pēpē ke loaʻa nā kīnā midline ʻē aʻe ma ka midline o ke kino (ka laina mai ke poʻo a i lalo).

Pehea e ʻike ai nā kauka i kēia?

I ka hapanui o nā hihia, inā loaʻa i kāu pēpē ʻo Ectopia Cordis, hiki ke ʻike ʻia i ka wā o ka ultrasound scan maʻamau i ka wā hāpai. Hiki ke ʻike ʻia i ka wā mua o ka trimester mua o ka hāpai ʻana. Pono paha ʻoe e loaʻa i kahi pōʻai ʻē aʻe o nā ultrasound scans e hōʻoia i ka maʻi. He mea nui loa nā hopena o kēia mau hoʻokolohua iā ʻoe e hoʻoholo ai i ka mea e hana ai ma hope.

Inā hoʻoholo ʻoe e hoʻomau i kou hāpai ʻana, e nānā pono kāu kauka i ka ulu ʻana o kāu pēpē. Hiki i kēia ke komo pū me MRI ( magnetic resonance imaging).E hoʻohana ʻia nā hoʻokolohua )` a me `(Echocardiography)`. He hoʻokolohua kūikawā ka Echocardiography e hoʻohana ana i nā nalu kani e lawe i nā kiʻi kikoʻī o ka puʻuwai.

Hoʻokaʻawale pū nā kauka i kēia kūlana e like me kahi o ka puʻuwai.

He aha nā lāʻau lapaʻau no kēia?

I ke kamaʻilio ʻana e pili ana i nā koho lapaʻau , ʻo ka mea mua e noʻonoʻo ai, ʻo ia ka palekana o ka pēpē. No laila, ʻo ke ala wale nō e hānau ai i ka pēpē ma o ka ʻoki cesarean (C-section). ʻO ia ke ala maikaʻi loa e hoʻopuka ai i ka pēpē me ka ʻole o ka hōʻino ʻana i ka puʻuwai ma waho.

Ma hope o ka hānau ʻana, pono paha kāu pēpē i ke kōkua hou aku i ka hanu ʻana. No ka hana ʻana i kēia, e hoʻokomo nā kauka i kahi ʻōmole palaki palupalu i loko o ka ʻōpū makani o kāu pēpē e hōʻoia i ke kahe ʻana o ke ea. Hiki iā lākou ke hoʻokomo i kahi wai kūikawā ma o ka ʻōmole e uhi ana i nā māmā e kōkua iā lākou e omo maikaʻi i ka oxygen.

ʻO ka pahuhopu nui o ka mālama ʻana iā Ectopia Cordis, ʻo ia ke pani ʻana i ka puka ma ka umauma ma ke ʻoki ʻana, hoʻokomo hou i ka puʻuwai i loko o ka umauma, a hoʻoponopono i nā kīnā puʻuwai ʻē aʻe. ʻAʻole hana pinepine ʻia kēia mau ʻoki ʻana i ka manawa hoʻokahi. Hana ʻia lākou i kekahi mau pae.

ʻO ka pilikia mua a nui loa, ʻo ia ke hoʻokomo i ka puʻuwai i loko o kahi umauma liʻiliʻi ma mua o ka maʻamau. Ma hope o ka hana ʻana o ke kauka i kēlā, hoʻololi hou ʻo ia i ke kūlana o ka iwi umauma (sternum). I nā hihia e like me kēia, ʻaʻole hiki ke koho ʻia kahi hoʻoili puʻuwai .

He aha ka "Mālama Hōʻoluʻolu"?

I kekahi mau hihia, he mea pilikia loa ke ʻoki ʻana a he haʻahaʻa loa nā manawa kūpono o ka holomua. I ia mau hihia, e kamaʻilio kāu kauka me ʻoe e pili ana i kahi koho i kapa ʻia ʻo "Comfort Care."

ʻO ka pahuhopu ka hoʻēmi ʻana i ka ʻeha a me ke kaumaha o ka pēpē a hiki iā lākou ke ola i ke koena o ko lākou ola me ka ʻoluʻolu a me ka maluhia. He ʻano mālama kūikawā kēia e manaʻo ana e hōʻoluʻolu i ka pēpē a me ka ʻohana i kēia manawa paʻakikī, ma mua o ka mālama ʻana a me ka ho'ōla ʻana iā lākou.