Ua hōʻino ʻia ke keʻokeʻo o kāu pēpē? E kamaʻilio kākou e pili ana i ka Periventricular Leukomalacia (PVL)

Inā ua hānau mua ʻia kāu pēpē, a inā paha e loaʻa ana iā ʻoe kekahi mau lohi o ka ulu ʻana, he mea nui loa kēia nou. I kekahi manawa, hiki ke hōʻino ʻia nā wahi liʻiliʻi o ka lolo i nā pēpē. He kūlana kēia i kapa ʻia ʻo periventricular leukomalacia, a i ʻole PVL no ka pōkole. Mai hopohopo i kēia, e kamaʻilio kākou e pili ana i nā kikoʻī.

He aha ka PVL? E hoʻomaopopo maʻalahi kākou.

ʻAe, e nānā kākou i ke ʻano maʻalahi o ka PVL (Periventricular Leukomalacia) . ʻIke ʻoe, he ʻano paʻakikī loa ko kākou lolo a he ʻano kupaianaha. He ʻāpana like ʻole kona. ʻO kahi ʻāpana koʻikoʻi ka 'mea keʻokeʻo' . Ua like kēia me ka ʻōnaehana 'uea' i loko o ko kākou lolo. ʻO nā ʻāpana lolo, ʻo ia hoʻi, nā ʻāpana nerve (neurons) , e kamaʻilio pū kekahi me kekahi a mai ka lolo a i ke kaula spinal, a hoʻololi i ka ʻike ma o kēia ʻōnaehana 'uea', ʻo ia hoʻi, ka (mea keʻokeʻo) .

No laila, inā loaʻa i kāu pēpē ka periventricular leukomalacia, ʻo ia hoʻi he hōʻino i kahi ʻāpana o kēia mea keʻokeʻo . Hiki i kēia hōʻino ke hoʻopaneʻe i ka ulu ʻana o nā mākau neʻe o ka pēpē, ʻo ia ke ʻano o kā lākou kaohi ʻana i ko lākou kino, a me ko lākou mākau noʻonoʻo, ʻo ia ke ʻano o kā lākou noʻonoʻo a me ka hoʻomaopopo ʻana i nā mea. ʻAʻole wale ia, akā ʻo nā pēpē me kēia maʻi e piʻi aʻe ana ka pilikia o ka loaʻa ʻana o kahi maʻi i kapa ʻia ʻo cerebral palsy .

E wehewehe iki kākou i kēia inoa lōʻihi ʻo 'periventricular leukomalacia' a hoʻomaopopo iā ia. A laila e ʻoi aku ka maopopo:

• ʻO ke ʻano o "Peri" ʻo ia hoʻi "a puni" a i ʻole "e hoʻopuni ana".
• ʻO 'Ventricular' e pili ana i nā lua i piha i ka wai i loko o ka lolo. Kāhea pū mākou i kēia mau ventricles .
• ʻO ke ʻano o 'Leuko' he 'keʻokeʻo'. Pili kēia i ka mea keʻokeʻo o ka lolo.
• ʻO Malacia kahi 'palupalu' kūpono ʻole o nā ʻiʻo e hana ʻia ke hōʻino ʻia nā ʻiʻo. Hiki i nā kauka ke ʻike i kēia ma o nā hoʻokolohua.

No laila, i ka ʻōlelo maʻalahi, ʻo ka periventricular leukomalacia ka hōʻino ʻana i ka mea keʻokeʻo a puni nā ventricles i ka lolo o kāu pēpē, e hoʻomālielie ai iā lākou.

ʻO nā pēpē i hānau ʻia ma mua o 32 mau pule o ka hāpai ʻana, a i ʻole preterm loa, aia i ka pilikia nui loa o ka loaʻa ʻana o ka PVL. Hoʻonui kēia pilikia me ka pōkole o ka makahiki hāpai i hānau ʻia ai lākou, a i ʻole ke ʻano mua o ko lākou hānau ʻia ʻana.

Inā ua hānau mua ʻia kāu pēpē, maopopo iaʻu he tausani mau nīnau a me nā makaʻu i loko o kou manaʻo. He nui paha kou mau manaʻo e pili ana i ke olakino a me ka wā e hiki mai ana o kāu pēpē. Akā e hoʻomanaʻo, aia mau ka hui lapaʻau o kāu pēpē ma laila e kōkua iā ʻoe e hoʻomaopopo i kēia kūlana, a e kōkua a alakaʻi iā ʻoe a me kou ʻohana.

He aha nā hōʻailona o kahi pēpē me PVL?

He mea paʻakikī ke ʻike koke inā loaʻa i kahi pēpē ka PVL ma ka nānā wale ʻana iā lākou. ʻO ia hoʻi , ʻaʻohe paha he mau hōʻailona waho i ʻike ʻia . Akā i ka hala ʻana o ka manawa, hiki i ka PVL ke hana i hoʻokahi a ʻoi aku paha o nā hōʻailona ma lalo nei. He mea nui e makaʻala i kēia mau mea:

• Nā lohi o ka neʻe ʻana: Paʻakikī i ka noho ʻana i luna, ke kolo ʻana, ka hele ʻana, a i ʻole ka hoʻohana pono ʻana i nā lālā. No ka laʻana, lohi paha kekahi mau pēpē i ka paʻa pono ʻana i ko lākou ʻāʻī, a lohi paha i ka ʻōwili ʻana a i ʻole ka noho ʻana i luna ma mua o nā pēpē ʻē aʻe.
• Ka lohi o ka noʻonoʻo / (Kīnā noʻonoʻo): Ka nele o ka hoʻomaopopo ʻana a me nā hiki ke aʻo. Hiki i kēia ke komo pū me nā mea e like me ka lohi ʻana i ka ʻōlelo ʻana i nā huaʻōlelo a i ʻole ka paʻakikī i ka hoʻomaopopo ʻana i nā ʻōlelo maʻalahi.
• Nā pilikia kaulike: Paʻakikī i ka mālama ʻana i ke kaulike.
• Nā hemahema o ka ʻike a me ka lohe.
• ʻO ka spastic quadriplegia (ʻoʻoleʻa ma nā lālā ʻehā, ʻoi aku ka pololei, ka paʻakikī i ke kūlou ʻana a i ʻole ka hoʻolōʻihi ʻana) a i ʻole diplegia ( ʻoʻoleʻa i nā wāwae ʻelua wale nō) - hiki i kēia ke lilo i mau hōʻailona o ka cerebral palsy .

ʻIke pinepine ʻia kēia mau hōʻailona i ka piha ʻana o nā makahiki 2. ʻO kahi mea e hoʻomanaʻo ai, ʻokoʻa ka PVL mai kēlā pēpē a i kēia pēpē. ʻAʻole ia e hoʻopilikia i nā kānaka a pau ma ke ʻano like.

He aha nā kumu o ka PVL?

ʻO ke kumu nui o ka PVL ʻo ia ka wā ʻaʻole lawa ke koko a i ʻole ka oxygen i ka lolo o ka pēpē, ma mua a ma hope paha o ka hānau ʻana. E noʻonoʻo e pili ana i ia mea, pono i ko kākou mau pūnaewele lolo ka oxygen a me nā meaʻai e ola a hana. Ke hoʻolako pono ʻole ʻia kēia mau mea, ua hōʻino ʻia kēlā mau pūnaewele.

E like me ka mea i ʻōlelo ʻia ma mua, ʻo nā pēpē i hānau mua ʻia (preterm) , a i ʻole ka poʻe i hānau liʻiliʻi no ka makahiki gestational (liʻiliʻi no ka makahiki gestational), ʻo lākou ka mea i loaʻa i ka pilikia nui loa. ʻO kēia no ka mea ke ulu mau nei ko lākou lolo, e lilo ana lākou i mea palupalu loa. No laila, ʻoi aku ka maʻalahi o ka hōʻino ʻia.

ʻO kekahi mau mea ʻē aʻe e pili ana me PVL:

• Ke kahe ʻana o ke koko i loko o ka lolo (Intraventricular hemorrhage) .
• Ka haki mua ʻana o ka ʻeke amniotic i ka wā hāpai.
• Ka maʻi ʻana o ka ʻōpū o ka makuahine i ka wā hāpai.

Pehea e ʻike ai nā kauka i ka PVL?

Inā hānau mua ʻia kāu pēpē, e hana nā kauka i kekahi mau hoʻokolohua loiloi kūikawā i nā lā a me nā pule mua o ke ola o kāu pēpē.Hana ʻia kēia mau mea e ʻike mua i kekahi pōʻino o ka lolo. I kekahi manawa, ʻaʻole paha e hana ʻia nā hoʻokolohua a hiki i ka wā e hōʻike ai ka pēpē i nā hōʻailona o ke kūlana, e like me ka lohi o ka ulu ʻana.

Aia kekahi mau hoʻokolohua e hiki ai ke hoʻomaopopo pololei i ka PVL:

• ʻO ke kiʻi MRI lolo: Hiki i kahi scan MRI (Magnetic Resonance Imaging) ke kiʻi i nā kiʻi kikoʻī a maopopo loa o ka lolo o kāu pēpē. Hiki i kēia ke nānā i nā ʻano hōʻino i ka mea keʻokeʻo o ka lolo, kahi e kūlike me PVL.
• ʻO ke ultrasound poʻo: Hoʻohana ka ultrasound i nā nalu kani e hana i nā kiʻi o nā ʻiʻo o ke kino. He ʻano hana kēia i hoʻohana ʻia no ka ʻike ʻana i ka PVL. Inā loaʻa i kāu pēpē ka PVL, hiki i ka ultrasound ke hōʻike i nā loli i loko o ka mea keʻokeʻo o ka lolo.

He aha nā lāʻau lapaʻau no ka PVL?

ʻAʻohe lāʻau lapaʻau pololei a lāʻau lapaʻau paha no PVL i kēia manawa . ʻO ka pōʻino i ka lolo i hana ʻia e PVL he mau loa ia . Akā, mai hopohopo. Aia kekahi mau ʻano lapaʻau e hiki ke kōkua i ka hoʻomalu ʻana i nā hōʻailona o kāu pēpē a hoʻomaikaʻi i ko lākou ola . Hiki i kēia mau mea ke hāʻawi i ka nui o ka hōʻoluʻolu no kāu pēpē. Hiki i kēia mau mea ke komo pū me:

• Hoʻōla kino: Kōkua kēia i kāu keiki e hoʻomaikaʻi i kā lākou neʻe ʻana, a i ʻole ka kaohi kino. Hoʻokomo pū kēia i nā mākau neʻe maikaʻi (e like me ka paʻa ʻana i ka penikala, ke pihi ʻana i kahi pihi, ke nakinaki ʻana i nā kaula kāmaʻa) a me nā mākau neʻe nui (e like me ka noho ʻana, ke kukuli ʻana, ka hele wāwae ʻana, a me ka holo ʻana). E noʻonoʻo i ka ikaika o ke keiki inā loaʻa iā lākou kēia ʻano hoʻōla mai ka wā ʻōpiopio!
• Hoʻōla hana: Kōkua kēia i ke keiki e aʻo i nā ala hou e hana ai i nā hana o kēlā me kēia lā, e like me ka ʻai ʻana me nā lako a me ke komo ʻana i ke kapa, ma kā lākou iho. He mea nui loa kēia no ka hoʻonui ʻana i ke kūʻokoʻa o ke keiki.
• Lapaʻau ʻōlelo: Inā pilikia kāu keiki i ka ʻōlelo ʻana a i ʻole ke kamaʻilio ʻana me nā poʻe ʻē aʻe, hiki i kēia lāʻau lapaʻau ke kōkua. Hiki iā ia ke kōkua me nā mea e like me ka haʻi ʻōlelo, ka hoʻokumu ʻana i nā ʻōlelo, a me ka hoʻomaopopo ʻana.
• Nā mea kōkua: Hiki i nā mea kōkua e like me nā noho huila, nā mea hele wāwae, a me nā koʻokoʻo ke kōkua i ka hoʻonui ʻana i ka neʻe ʻana o ke keiki, a i ʻole ka hiki ke neʻe a puni. Hiki i kēia mau mea ke kōkua i ke keiki e hana i nā mea he nui ma o lākou iho.
• Nā lāʻau lapaʻau: Hiki i kekahi mau lāʻau lapaʻau ke hana i ka spasticity o nā ʻiʻo.Hiki iā lākou ke kōkua i ka kaohi ʻana i nā hōʻailona e like me, a i ʻole ke kōkua ʻana i ka kaohi ʻana i nā kūlana olakino ʻē aʻe (e.g., epilepsy) i loaʻa paha i kāu keiki. Pono e hoʻohana ʻia kēia mau mea ma lalo o ke aʻo a ke kauka.
• Nā lawelawe kaiāulu a me ke kākoʻo hoʻonaʻauao: Pono paha kāu keiki i ke kākoʻo hou aku me nā hana kula a i ʻole nā ​​​​​​mea ʻē aʻe o ke ola o kēlā me kēia lā. Hiki i nā limahana kaiāulu, nā loea hoʻonaʻauao, a me nā ʻoihana ʻē aʻe ke hāʻawi i kēia ʻano lawelawe kākoʻo a me ke kōkua.

ʻO ka mea nui loa, ʻo ia ka hana ʻia ʻana o kēia mau mea a pau e kōkua i ke keiki e ola i ke ola maikaʻi, ʻoluʻolu, a hauʻoli hoʻi.

Hiki iā mākou ke pale aku i ka PVL?

ʻAʻohe mea hiki iā ʻoe ke hana pololei e pale aku i ka PVL. ʻO ka pahuhopu nui ka hoʻāʻo ʻana e pale i ka hānau mua ʻana . ʻO kēia no ka mea he kumu nui ka hānau mua ʻana no ka PVL. Inā pilikia ʻoe i ka loaʻa ʻana o kahi pēpē hānau mua, ʻo ka hele ʻana i kahi i loaʻa nā hale lapaʻau kūikawā no nā hānau mua ʻana hiki ke kōkua i ka pale ʻana i kēia maʻi i kekahi ʻano.

ʻOiai ʻaʻole hiki ke pale ʻia ka hānau mua ʻana, hiki iā ʻoe ke hōʻemi i kou pilikia ma ka lawe ʻana i kēia mau hana i ka wā hāpai:

• No ka mālama maʻamau ma mua o ka hāpai ʻana , ʻo ia hoʻi, e hele i nā keʻena lapaʻau a ʻike i nā kauka.
• E mālama i kou mau kūlana olakino, e like me ka maʻi diabetes mellitus , ke koko kiʻekiʻe, a i ʻole ke kaumaha .
• E pale loa i ka puhipaka, ka waiʻona, a me ka hoʻohana ʻana i nā lāʻau ʻē aʻe.
• E ʻai i ka meaʻai momona .
• E hoʻonui i ke kaumaha ma ke ʻano olakino i ka wā hāpai.
• E mālama iā ʻoe iho mai nā maʻi i hiki ke hōʻeha iā ʻoe a me kāu pēpē i hānau ʻole ʻia.
• E ho'āʻo e hōʻemi i ke kaumaha i ka hiki a noho mālie.

Inā loaʻa i kaʻu keiki ka PVL, he aha kaʻu e manaʻo ai no ka wā e hiki mai ana?

ʻAʻole like ka hopena o nā keiki āpau me PVL. ʻO ke ʻano kēia, hiki i kekahi keiki ke ʻokoʻa loa mai kekahi . ʻO ka wānana/nānā no ke keiki e pili ana i kekahi mau kumu. No ka laʻana, ke koʻikoʻi o ka hōʻino ʻana o ka lolo a me nā pilikia olakino ʻē aʻe i loaʻa i ke keiki.

Loaʻa paha i kekahi mau keiki nā hōʻailona palupalu loa , a ʻaʻohe hōʻailona iki. Hiki iā lākou ke ola maʻamau. Eia nō naʻe, loaʻa paha i kekahi poʻe nā kīnā kino a me/a i ʻole nā ​​​​​​kino noʻonoʻo . E hiki i kāu kauka ke hāʻawi iā ʻoe i kekahi manaʻo no ke ʻano o ka pōʻino i loaʻa i kāu pēpē a pehea e pili ai i ko lākou ulu ʻana.

E noʻonoʻo wale, i kekahi manawa he pilikia nui paha ke keiki i ko lākou wā ʻōpiopio, akā me ka mālama kūpono, hiki iā lākou ke komo i kahi kūlana maikaʻi loa me ko lākou hoihoi ponoʻī. No laila, mai hoʻokuʻu i ka manaʻolana.

ʻAʻole hiki ke wānana pololei i ke ʻano o ka hopena o kāu pēpē. ʻO ka mea maikaʻi loa āu e hiki ai ke hana, ʻo ia ke kamaʻilio me nā loea e noiʻi a mālama i ka PVL. I ka wā e ulu ai kāu keiki, e pōmaikaʻi nui lākou mai ke kōkua o kahi hui o nā loea e hiki ke hoʻopilikino i kā lākou lāʻau i ko lākou mau pono.

He aha ke kūlana o ke ola o kekahi me PVL?

He mea hopohopo kēia no nā mākua he nui. Hiki ke manaʻo ʻia ka hapa nui o nā pēpē me PVL e ola i ke ola piha . Eia nō naʻe, inā loaʻa i kāu pēpē ka pōʻino nui o ka lolo a i ʻole nā ​​​​​​maʻi koʻikoʻi ʻē aʻe , ʻoi aku ka pōkole o ko lākou ola. ʻO kekahi mau mea e hiki ke hoʻopilikia i ko lākou ola:

• Ka paʻakikī i ka ʻai ʻana a me ka inu ʻana.
• Ka hiki ʻole ke hoʻoneʻe i ke kino a i ʻole nā ​​pilikia neʻe.
• Nā pilikia hanu.

ʻAʻole pili kēia i nā kānaka a pau, akā he mea maikaʻi ke makaʻala i nā mea e like me kēia. E kamaʻilio me kāu kauka e pili ana i kēia.

No laila, e nānā kākou i kekahi o nā mea e pono ai kākou e hoʻomanaʻo mai kēia? (Leka Lawe-Home)

He nui nā manaʻo o ka makuahine a i ʻole ka makuakāne i ka wā a ma hope o ka hānau ʻana o kahi pēpē, ʻeā? ʻOiai inā hānau mua ʻia ke pēpē a pono paha e mālama ʻia i loko o kahi NICU (Neonatal Intensive Care Unit) , he paʻakikī ke haʻi aku i ke kaumaha āu e manaʻo nei i kēlā manawa. A laila, i kou hoʻolilo ʻana i nā lā a me nā pule me nā kauka a me nā hoʻokolohua, pono paha ʻoe e hana me nā mea hou aku ma mua o kou manaʻo. Manaʻo paha ʻoe ua pau nā mea āpau i ka mana, a hiki paha iā ʻoe ke hoʻāhewa iā ʻoe iho.

Akā, ma kēia kūlana i kapa ʻia ʻo periventricular leukomalacia (PVL) , ʻaʻohe mea e hoʻopiʻi ʻia . ʻAʻole ʻike pono nā mea noiʻi i ke kumu. ʻO kekahi mea nui, ʻo ia ka hopena o ka PVL i kēlā me kēia keiki ma ke ʻano ʻokoʻa . No laila, he mea nui e hana pū me ka hui lapaʻau o kāu keiki e hāʻawi i ka mālama olakino maikaʻi loa, nā ʻōlelo aʻoaʻo, a me ke kākoʻo i ka wā e ulu ana kāu keiki.

E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi ma kēia huakaʻi. Aia kāu mau kauka, nā kahu maʻi, nā mea hoʻōla, a me kou ʻohana a me nā hoaaloha ma laila e kākoʻo iā ʻoe.

Eia kekahi, he mea nui loa ka mālama ʻana iā ʻoe iho . Aia wale nō kou ikaika a olakino hiki iā ʻoe ke mālama pono i kāu keiki. I kēlā me kēia manawa āu e kaumaha ai, e kamaʻilio me kahi āu e hilinaʻi ai. Inā pono, mai kānalua e ʻimi i ke aʻo ʻana. ʻO ka hoʻolaʻa āu e hana ai i kāu keiki, he mea waiwai ʻole ia.

`ʻO ka leukomalacia periventricular, PVL, hōʻino ʻana o ka lolo, hānau mua ʻana, nā lohi o ka ulu ʻana, ka maʻi lolo, ke olakino o ke keiki