{"id":58641,"date":"2015-09-30T15:32:27","date_gmt":"2015-09-30T19:32:27","guid":{"rendered":"https:\/\/rarediseases.org\/giving-spotlight-elizabeth-and-chris-honor-son-obie-with-donations-to-nord-a-favorite-charity\/"},"modified":"2015-09-30T15:32:27","modified_gmt":"2015-09-30T19:32:27","slug":"giving-spotlight-elizabeth-and-chris-honor-son-obie-with-donations-to-nord-a-favorite-charity","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/giving-spotlight-elizabeth-and-chris-honor-son-obie-with-donations-to-nord-a-favorite-charity\/","title":{"rendered":"Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity"},"content":{"rendered":"

\u201cWe are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.\u201d<\/strong><\/p>\n

A rainbow baby is a baby born after a miscarriage, stillbirth, or infant loss. \u00a0We had never heard the term before Obie, say parents Elizabeth and Chris.<\/p>\n

Oberon (Obie) Christopher Thoma was born to first-time parents Elizabeth and Christopher on November 24, 2014, six weeks early, measuring 6 lbs 2.6 oz and 19 inches long.\u00a0During Elizabeth\u2019s pregnancy, an ultrasound diagnosed Obie with an omphalocele, a rare and severe condition of the abdominal wall.\u00a0 After undergoing many subsequent tests to determine if Obie had any of the disorders that can be common with an omphalocele, they were thankful to receive favorable results, yet still cautious, knowing it was not possible to test for everything.<\/p>\n

“While we waited for Beastie’s prognosis information, a lot of scenarios ran through our heads,” they recall, using one of their son\u2019s nicknames. \u00a0\u201cWhat if the little guy had a condition with a life expectancy of less than a month, and that life would be filled with surgeries, oxygen tubes, poking and prodding? \u00a0What if he had a condition with a longer life expectancy, but no possibility of ever being able to take care of himself?\u201d<\/p>\n

As time went on, there was good news that the omphalocele appeared to be quite small.\u00a0 Obie came into the world at 4:55 a.m. and \u201che started crying almost immediately and was impressively loud, especially for a preemie,\u201d says Elizabeth.<\/p>\n

After a flurry of activity with Chris and a team of doctors and nurses huddled around Obie and an isolette, Elizabeth was finally able to hold her son briefly before they whisked him away.\u00a0 After that, she remembers how \u201cthe room had gone from loud and crazy to nearly silent in the blink of an eye.\u201d<\/p>\n

\"rare<\/a>
Photo provided by Thoma family<\/figcaption><\/figure>\n

Doctors performed the omphalocele surgery and everything went extremely well, however, Obie had trouble breathing due in-part to a large tongue.\u00a0 It was then determined that he had Beckwith-Weidemann Syndrome (BWS), an overgrowth disorder characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from case to case. In approximately 85 percent of cases, BWS results from genetic changes that appear to occur randomly.\u00a0 Approximately 10-15 percent of cases of this syndrome run in families and show autosomal dominant inheritance.<\/p>\n

In the maternity ward, Elizabeth recalls the difficulty of being apart from Obie: \u201cI was prepared for a non-typical delivery, but I wasn’t prepared for the constant reminders that Obie was having a harder time than most babies.\u201d A few days later, Obie had a seizure and was found to have bleeding in his brain.\u00a0 Further testing showed that his brain had not developed properly and he would not be able to sustain his life.<\/p>\n

The family was heartbroken. \u00a0Doctors and nurses in the NICU worked hard so that Elizabeth and Chris could bring Obie home.\u00a0 There were no guarantees that he would make it home or how long they would have with him. They arrived home on December 9th<\/sup> \u2013 the day they now call Obie Xmas and dedicate to helping others, inspired by Obie and his nurse who was their \u201cpersonal Santa and gave us bags and bags of things we needed to take care of our little bug.\u201d\u00a0 Elizabeth and Chris spent each day holding, cuddling, and caring for their boy.\u00a0 Obie passed away on December 28th<\/sup>, 33 days after he was born.<\/p>\n

\"withparents\"<\/a>
Photo provided by Thoma family<\/figcaption><\/figure>\n

After friends and family members asked if there was anything they could do, Elizabeth and Chris posted on their blog about Giving for Obie<\/a>, and they listed NORD as one of Obie’s favorite charities. Elizabeth and Chris say NORD helped them around the time of Oberon’s diagnosis through the page on the NORD website with resources for his condition and a general overview.<\/p>\n

\u201cThis type of support (simple as it is) is extremely helpful for families when a loved one is diagnosed with something rare and foreign,\u201d they say. Obie\u2019s parents share their story to celebrate everything about Obie and in case their experience is helpful to others.\u00a0 They began their blog, \u201cOur Little Beastie Blog<\/a>,\u201d about a month after Obie’s omphalocele was discovered.<\/p>\n

\u201cObie brought sunshine into our lives from the very beginning. \u00a0He changed the way we see the world. \u00a0Losing him cast a gray cloud over everything, and at times it felt like we’d never see the sun again,\u201d says Elizabeth.<\/p>\n

Earlier this month, Elizabeth and Chris announced that they are expecting their second child.\u00a0 \u201cWe know a rainbow baby won’t replace Obie, but we also know that we are ready to be parents to a living child.\u201d Elizabeth also writes a weekly Bump Day Blog over at\u00a0Pregnancy After Loss Support<\/a>. \u00a0\u201cIt’s both comforting and terrifying to know other people who’ve experienced child loss,\u201d she says.<\/p>\n

They are grateful to the generosity and gifts given to them to memorialize Obie. \u00a0They say having physical things to see and touch has been helpful and donations make them smile. \u201cThe mail brings us a smile when we see a thank you letter from one of\u00a0Obie’s favorite charities<\/a>.\u00a0We’re tracking the Obie donations we know of and hope to continue doing so. \u00a0 Thank you to those donated in honor of Obie\u2026 The notes and gifts we’ve received make us smile, and knowing our son has touched others has real meaning.\u201d<\/p>\n

If you are interested in making a gift to NORD or in honor of a loved one, please visit our Ways to Donate<\/a> page or contact Ahleum Morris, amorris@rarediseases.org<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cWe are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.\u201d … <\/p>\n

Continue reading “Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":11995,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505],"tags":[775,776,774,777],"class_list":["post-58641","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","tag-beckwith-weidemann-syndrome","tag-giving-spotlight-giving-to-nord","tag-omphalocele","tag-thoma-family"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58641","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58641"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58641\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11995"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58641"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58641"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58641"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}