{"id":1755,"date":"2025-06-21T20:44:48","date_gmt":"2025-06-21T20:44:48","guid":{"rendered":"https:\/\/www.protectourcareil.org\/?p=1755"},"modified":"2025-06-24T20:46:16","modified_gmt":"2025-06-24T20:46:16","slug":"medicaid-helps-keep-this-toddler-alive-and-at-home-federal-cuts-could-put-it-all-at-risk","status":"publish","type":"post","link":"https:\/\/www.protectourcareil.org\/index.php\/2025\/06\/21\/medicaid-helps-keep-this-toddler-alive-and-at-home-federal-cuts-could-put-it-all-at-risk\/","title":{"rendered":"Medicaid helps keep this toddler alive and at home. Federal cuts could put it all at risk."},"content":{"rendered":"

Inside Marely\u2019s hospital room, the mother massaged her baby\u2019s feet and played with her hands. Marely\u2019s dad Jose listened to her failing heart one last time with a stethoscope. Then, the mother took her turn.<\/p>\n

\u201cAnd I remember crying because I was like, \u2018I carried this heart for nine months,\u2019 \u201d Santos says. \u201cWe\u2019ve been able to keep it alive for another six. But will we keep it alive for another day to get the transplant?\u201d<\/p>\n

Marely made it in time. Her mom calls her daughter\u2019s new heart \u201cMarely\u2019s miracle.\u201d<\/p>\n

After the hospital, Marely spent another six months in transitional care before finally coming home in January. She\u2019s now nearly 2 years old. A big reason she is able to live at home is because of Medicaid. The public health insurance program for low-income and disabled people covers the cost for medically fragile children dependent on technology. Similar care in a hospital or another facility would be far more expensive.<\/p>\n

A study<\/a>\u00a0at Lurie showed that the cost for a group of children on ventilators who were delayed in returning home because they couldn\u2019t get nursing care was about $180,000, on average, per patient while they waited.<\/p>\n

Medicaid covers everything from Marely\u2019s portable ventilator and feeding tube to a nurse trained in managing the breathing machine. This program is available to families who have private insurance, too, like Marely\u2019s parents, because caring for medically fragile children at home is significant \u2014 Marely is eligible for at least $30,000 a month for nursing, for example \u2014 and private insurance\u00a0often doesn\u2019t fully cover<\/a>\u00a0these costs, if at all.<\/p>\n

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As the Republican-controlled U.S. Senate is\u00a0set to vote<\/a>\u00a0on drastically\u00a0slashing federal spending<\/a>\u00a0for Medicaid to help cover tax cuts, families, doctors and nurses worry about what could happen to children like Marely.<\/p>\n

\u201cThere\u2019s absolutely no way families can pay for the care that their children need to allow them to stay at home,\u201d Knowles says. \u201cYou would have to be so immensely well off, and unfortunately most of our families aren\u2019t.\u201d<\/p>\n

Read more here: https:\/\/chicago.suntimes.com\/the-watchdogs\/2025\/06\/21\/medicaid-toddler-heart-transplant-kassandra-santos-marely-chavarria-santos-lurie-childrens-hospital<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Inside Marely\u2019s hospital room, the mother massaged her baby\u2019s feet and played with her hands. Marely\u2019s dad Jose listened to her failing heart one last time with a stethoscope. Then, the mother took her turn. \u201cAnd I remember crying because I was like, \u2018I carried this heart for nine months,\u2019 \u201d Santos says. \u201cWe\u2019ve been able to keep it alive for another six. But will we keep it alive for Read More…<\/a><\/p>\n","protected":false},"author":17,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1755","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"yoast_head":"\nMedicaid helps keep this toddler alive and at home. 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