He aha ka Beckwith Wiedemann maʻi pale, pehea e hoike mai ai ia ia?

ua, aole i lohe ka hapanui kanaka o ia i kekahi maʻi like Beckwith Wiedemann maʻi pale, akā, aole nae ia, aole ia e hoʻomaka ai loa kākaʻikahi. Wahi a ka 'ikepili helu, ua hanau kekahi mau keiki ma ka awelika no kela 13.700 keiki. Ka maʻi pale ia lŘlŘ like me ka hopena o nā loli i loko o chromosome 11, i mea he aaiaoe maʻi. Wńnana i ka hanana o ia i ka maʻi i loko o mua mea aneane hiki ole i. Kahi o 85% o na makua o ke keiki aole au i ai i heihei i kekahi irregularity pili ana i aaiaoe?. Akā, ma ka i koe 10-15% o Beckwith Wiedemann maʻi pale ua ili mai iā ia. He aha kou pono e ike e pili ana i kēia maʻi, oia hōʻike ana i ka lapaau a me ka malama ana o na keiki - a pau i kēia a mākou e'ōlelo i kēia lā.

Aha keia

Beckwith Wiedemann maʻi pale - keia mea mea akā, he 'aʻe' ana i ka rula o ka ulu ana. I ka maʻi e i okoa ano hiʻona, akā, hiki ke hana, a ua pau ka aniani moakaka. Pinepine i ho'ākāka 'externally, i ka wa a ke keiki e hanau nui (macrosomia) he pāʻumi oi ma mua o 4 kg a me ka ulu o ka oi mamua o 56 knm. I keiki ke e disproportionate a'ōpaha māhele o ke kino, e like me elelo he nui (macroglossia), a me ka hana, nui pepeiao a me kā lākou mau mea ano unnaturally uake pāpālina, a no laila, ma luna o. Pinepine pu ma ka mā o ka peritoneum (diastasis Muscle, umbilical hernia),ʻaʻa puʻuwai kāna hana, i hāʻawe predisposed i ka hikoko. Lakou e Ua hoʻomāhuahuaʻoe i kekahi na nā loko, naau maʻi ana. Keiki e ae mai hypoglycemia (haʻahaʻa koko kōpaʻa), ke kāʻili 'ke'ākoʻakoʻa i keia manawa. I loa hoopii, hiki ana ona.

Ei no ka ke ola

Mau keiki i okoa mai lākou mau na¯: ka mea, e nui nui, kiekie, a me ka mea ulu koke iwi nuipa a. A i ka maʻi ua ole i olelo ia ikaika, 'āwīwī palapala hōʻoia no kōkua kauka, a kūpono malama i hoomakaukau ai - ke kēla mea he maikaʻi. Over manawa, he hana ka ulu a me ka ulu 'aʻole hoʻi ia maoli ai, ke kino nui a me ka huliāmahi Lele aku kėlä hoʻi. Maopopo ka mea, e hōʻike mai ana i ka hoike Beckwith Wiedemann maʻi pale, Photos a me Pictures, ma lalo ia. Ka mea, ua maopopo i nanaia na hoailona o ka maʻi: E hoomahuahua auanei iwi poʻo, macroglossia, umbilical hernia i loko o ke keiki.

Pehea e hōʻike

aaiaoe ikea ai'ōnaehana no ka hiki mutational haiahū kūmau ka loa huikau, akā, ka mea hiki ke kōkua i ka hōʻike ma kahi o 80% o ka hihia. I nā mākua e kipa i kekahi kahuna lapaau-geneticist, ka mea e kūlike o ka hooholo ia ana o ke ao, a e haawi aku i ka piha kuka e pili ana i ke kanaka hihia.

Mākou i ka wahine hapai hiki i hōʻike Beckwith Wiedemann maʻi pale. Symptoms hiki ke wehewehe aku ma kekahi mau complications o ka hāpai keiki. Pinepine, ua mahuahua dala o amniotic loli puni ka fetus, abnormally lōʻihi, nui ka piko a me keiki, me ka nui loa maoli ka pilikia o premature hanau. Ka loaʻaʻana o nā deviations ana i ka manawa o ka ultrasound.

lapaʻau

Hoemi ia kekahi mau mana hoʻomalu ma luna o ka ola o ke keiki, a hoʻolako i aku la ia ia i ka pono kōkua i loko o kanaka hihia. E kanaka hoʻoponopono i ka maʻiʻo o ke kalipuna i loko o ke koko a me ka kōpaʻa. Ka pilikia o ka hikoko i loko o kēia mau kanaka nei ma kahi o 8%, ka mea hoʻomanaʻoʻia ai ia, a ma ka mea iki e hoʻohuoiʻia, e noi i ke kōkua ma ke ola. Eia naʻe, i loko o ka hapanui hoopii, lapaʻau ka holomua. Nā mākua mea i hanau i diagnosed me Beckwith Wiedemann maʻi pale, i kou manaʻo ma ka kūlana a me ka pono o ke ola i koe he maikaʻi. Ka mea, e ae aku i hoʻokali kūpono 'ola kino pilikia, a alakai i ka piha ola.

Na kamalii uuku e loaa ana mai ka makrogloksii iaʻoki lāʻau lapaʻau 'uao, e hooponopono i ke kinona o ka' ōlelo. Ma hope o nā mea a pau, i ka pathology hiki ia i ka nui pilikia i ka wa e hanai ana oia i ka pēpē, kōkua i ka hoʻokō 'ole' naehana hanu, a me ka wā e hiki mai i pili i ka leo e like ai. i ke hoʻoponopono i nā mea pilikia me ka umbilical hernia 'ole' ē aʻe loli ma ka na nā loko. Ua hiki ke koi i ke kōkua o ke podiatrist a me ka immunologist.

Mau keiki i loko,ʻAʻole eʻole e pono ai o ka makua malama. Pale hypothermia, kikoo a me ka dukima o nā mea palahēhē. Children me keia maʻi pale pinepine i'ōnaehana paleʻea ia wā, a no ka mea, i kekahi, a hiki i ka hoʻomaopopo like anu ke alakai i ka mea complications. Ma ka iki pilikia, imi kōkua mai i kekahi kauka.

Ua mea hiki ke pale aku

E kuhikuhi i na hou aaiaoe o chromosomes, mai ko lākou mau mākua, a laila, wńnana i ka hanau ana o ke keiki me ka maʻi pale hiki wale ke mālama 'ia ka mua e ho'āʻo ai ma mua hoʻolala hāpai keiki. Akā, he poe uuku'ōpio lākou mauʻohana, e manaʻo e pili ana i ka mea ma hope o ka ahaaina. Pinepine loaʻa mai kanaka e pili ana i keia i kona "pau" ma hope o ka hanau ana o ke keiki a me na hoailona o Beckwith Wiedemann. Ke mutation Ua pū i hiki i ka autosomal Hoʻohaku hooilina type. Ia mea, ina kekahi o nā hoahānau pili koko - kou a me kou wahine o - ua e like me ka pohāʻana o ke keiki a ke kaikamahine i ka manawa e loaaʻi ka maʻi pale "ili" ka 50%. Eia naʻe, e hoʻoponopono i ka pilikia a me ka lapaʻauʻia mea,ʻaʻole i hiki. Ke wale pāʻoihana ma keia kulana home 'ole i ia i ke kaʻina hana o IVF fertilization.