Hoʻokaʻawale ʻo CHOP Surgeons i nā māhoe i hui ʻia i ka home

ʻO kahi hui ʻokiʻoki i komo i ʻoi aku ma mua o ʻelua mau kaukani kauka, me nā kauka lapaʻau maʻamau, anesthesiologists, radioologists, cardiothoracic surrgeon, a me plastic surrgeons, ua hoʻopau ma kahi o 10 mau hola e hoʻokaʻawale i nā kaikamahine. I ka wā i hoʻokaʻawale ʻia ai nā māhoe, ua māhele ʻia ka hui ʻokiʻoki i ʻelua a kūkulu hou i ka umauma o kēlā me kēia kaikamahine a me ka paia o ka ʻōpū, me ka hoʻohana ʻana i nā ʻenehana mesh a me nā ʻano hana ʻokiʻoki e hoʻopaʻa i kēlā me kēia pēpē.

"He mea paʻakikī ka hoʻokaʻawale ʻana i nā māhoe conjoined no ka mea ʻokoʻa kēlā me kēia pūʻulu māhoe, a he mau pilikia like ʻole lākou a me nā noʻonoʻo anatomic," i ʻōlelo ʻia ai ke kauā alakaʻi ʻo Holly L. Hedrick, MD, he kauka lapaʻau e hele ana i ka pediatric and fetal surgeon ma ka Division of Pediatric General , ʻO ka ʻoki ʻana o Thoracic a me Fetal ma ka Halemai o nā keiki o Philadelphia. "ʻO ke ʻano o kā mākou hui e hana pū ai, he mea kupaianaha a kūikawā, me ka nui o nā poʻe e hui pū nei e hana i kahi pahuhopu maʻamau. Ke hana maikaʻi nei ʻo Addy lāua ʻo Lily, a ʻo ko mākou manaolana e loaʻa iā lāua nā ola piha e hauʻoli.

Mai ka hōʻoia ʻana a hiki i ka lawe ʻana

Ua hoʻomaka ka huakaʻi a Addy lāua ʻo Lily i ka wā i ʻike ʻia ai lāua i ka wā ma mua o ko lāua koho ʻana i ka ultrasound 20-wiki. Ma mua o kēlā koho ʻana, ua manaʻo nā mākua ʻo Maggie lāua ʻo Dom Altobelli he keiki hoʻokahi lāua, akā ua hōʻike ʻia ke kiʻi ultrasound ʻaʻole wale ʻo Maggie e hāpai ana i ʻelua mau keiki hānai akā ua pili pū lāua ma ka ʻōpū.

He mea kakaikahi na māhoe hui, hiki mai ma kahi o 1 wale nō ma 50,000 hānau. Ua hāʻawi ʻia ka male i CHOP no ka loiloi hou ʻana, ʻoiai ʻo ka haukapila kekahi o nā mea liʻiliʻi ma ka ʻāina me ka ʻike e hoʻokaʻawale i nā māhoe conjoined. ʻOi aku ma mua o 28 mau māhoe conjoined i hoʻokaʻawale ʻia ma CHOP mai 1957, ʻo ka hapa nui o nā halemai ma ka ʻāina.

Ua hui nā kāne me nā loea ma CHOP's Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, kahi i hana ai ʻo Maggie i nā hoʻokolohua prenatal nui e hoʻoholo ai inā hiki ke hoʻokaʻawale i nā māhoe, e pili ana i ko lākou pilina a me ka anatomy like. Ua ʻike nā kauka ʻoiai ʻo nā kaikamahine i kaʻana like i ka umauma a me ka paia o ka ʻōpū, ka diaphragm, a me ke akepaʻa, ua ʻokoʻa nā puʻuwai olakino nā māhoe. Ua lawa nō hoʻi ka nui o ko lākou ate e hoʻokaʻawale ai i waena o lākou, e hoʻolilo iā lākou i mau moho maikaʻi loa no ke ʻoki kaʻawale.

Ma hope o nā mahina o ka hoʻolālā ʻana no ka hāʻawi ʻana i ka pilikia nui ma o ka C-section, alakaʻi ʻia e Julie S. Moldenhauer, MD, Luna Hoʻokele o Obstetrical Services, ua hānau ʻia ʻo Addy lāua ʻo Lily ma Nowemapa 18, 2020 ma ka Garbose Family Special Delivery Unit (SDU), ʻO ka hui lawe maʻi maʻi o CHOP. Ua noho lākou i ʻehā mahina ma ka Newborn/Infant Intensive Care Unit (N/IICU), a ukali ʻia e ʻeono mahina ma ka Pediatric Intensive Care Unit (PICU). Ua hoʻokomo ʻo David W. Low, MD, ʻo CHOP i nā mea hoʻonui ʻili e hoʻopololei i ka ʻili o nā kaikamahine i ka hoʻomākaukau ʻana no ke kaʻawale ʻana. E like me nā baluna liʻiliʻi liʻiliʻi, e hoʻonui mālie nā mea hoʻonui i ka ʻili ma o nā injections, e hoʻolohi mālie i ka ʻili i ka manawa i lawa ka ʻili o kēlā me kēia kaikamahine e uhi i kona paia umauma a me ka ʻōpū ma hope o ka kaʻawale ʻana.

He Opuu Pakiki

I ka wā i paʻa ai nā māhoe a ua lawa ka ʻili no ka uhi pono ʻana ma hope o ka hoʻokaʻawale ʻana, ua mākaukau lākou no ke ʻoki. He mahina ma mua o ka ʻoki ʻana, ua hui ka hui ʻokiʻoki i kēlā me kēia pule, e nānā hou ana i nā kiʻi ultrasound no ka nānā ʻana i ke koko i nā ate o nā kaikamahine, i hiki ai iā lākou ke hoʻokaʻawale i ke kahe o ke koko a i kahi i ʻaʻa ai nā ʻōpū o nā kaikamahine. Ua hoʻokumu nā radiologists CHOP i nā hiʻohiʻona 3D, i hui pū ʻia e like me nā ʻāpana Lego®, i hiki i ka hui ʻokiʻoki ke hoʻomaopopo i ka pilina o ka anatomy kaʻana like o nā kaikamahine a hoʻomaʻamaʻa i ke ʻoki ʻana i nā hoʻomaʻamaʻa hele wāwae, e like me ka hoʻomaʻamaʻa lole no ka lā o ke ʻoki.

Ma ʻOkakopa 13, 2021, ma hope o nā mahina o ka hoʻomākaukau ʻana, ua hana ʻo Addy lāua ʻo Lily i kahi ʻokiʻoki he 10 mau hola a ua hoʻokaʻawale ʻia ma 2:38 pm Radiology ma ka lima i ka wā o ke kaʻa ʻana e palapala i nā hale koʻikoʻi o ka ate me ka ultrasound. I ka wā i hoʻokaʻawale ʻia ai nā kaikamahine, ua māhele ʻia ka hui ʻokiʻoki i ʻelua a hana i ka hoʻopaʻa ʻana i kēlā me kēia kaikamahine a kūkulu hou i kona umauma a me ka paia o ka ʻōpū. Ua hoʻopaʻa ʻo Stephanie Fuller, MD, he kauka lapaʻau cardiothoracic, i ka patent ductus arteriosus o nā kaikamahine a ua hōʻoia i ka naʻau o nā kaikamahine ʻelua i ke kūlana kūpono a me ka hana maikaʻi. Hoʻonoho nā kauka lāʻau lapaʻau i ʻelua mau ʻanuʻu - hoʻokahi manawa, hoʻokahi paʻa - ma luna o ka ʻōpū a me nā paia umauma o nā māhoe a laila uhi ʻia me ka ʻili i hoʻohola ʻia i nā mahina ʻoiai nā kaikamahine i ka PICU. 

I ka pau ʻana o nā kaikamahine i ka ʻoki ʻana, ʻike ʻo Maggie lāua ʻo Dom i kā lāua mau kaikamāhine i kaʻawale no ka manawa mua.

"ʻO ka ʻike ʻana iā lākou me ko lākou kino ponoʻī - maikaʻi loa ko lākou kino - he mea kupanaha," wahi a Maggie. "He mea hiki ʻole ke wehewehe ʻia."

Ka home no nā lā nui

Ma Kekemapa 1, 2021, ua lele hope ka Altobellis i ka home i Chicago - hoʻokahi māhoe i ka manawa, me hoʻokahi makua pākahi - ma hope o ka noho ʻana ma Philadelphia no hoʻokahi makahiki. Ua noho nā māhoe i ʻelua pule ma Lurie Children's Hospital ma lalo o ka mālama ʻana a ka hui lapaʻau e kākoʻo iā lākou kokoke i ka home. Ua hoʻokuʻu ʻia nā kaikamahine i ka manawa Kalikimaka a hōʻea i ka home e ʻike i ko lākou pā hale i kāhiko ʻia e ko lākou mau hoalauna. Ua hoʻomaha lākou i ka lā hoʻomaha ma ka home ma ke ʻano he ʻohana ʻehā.

Loaʻa iā Addy lāua ʻo Lily nā paipu tracheostomy a me nā ventilator e kōkua i ko lāua hanu ʻana, no ka mea, pono lākou i ka manawa e hoʻomohala ai i ka musculature a hoʻoponopono i ka hanu ʻana iā lākou iho. I ka manawa, e hoʻopau ʻia lākou mai nā ventilator.

"Ke hoʻomaka nei mākou i puke hou - ʻaʻole ia he mokuna hou, he puke hou ia," wahi a Dom. "Ua hoʻomaka mākou i puke hou no nā kaikamāhine, a aia kahi puke Addy, a aia kahi puke Lily."