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Sep. 30, 2015

TOPIC: Patient Stories

Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

Posted by Jennifer Huron
rare disease omphalocele

“We 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.”

A rainbow baby is a baby born after a miscarriage, stillbirth, or infant loss.  We had never heard the term before Obie, say parents Elizabeth and Chris.

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. During Elizabeth’s pregnancy, an ultrasound diagnosed Obie with an omphalocele, a rare and severe condition of the abdominal wall.  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.

“While we waited for Beastie’s prognosis information, a lot of scenarios ran through our heads,” they recall, using one of their son’s nicknames.  “What 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?  What if he had a condition with a longer life expectancy, but no possibility of ever being able to take care of himself?”

As time went on, there was good news that the omphalocele appeared to be quite small.  Obie came into the world at 4:55 a.m. and “he started crying almost immediately and was impressively loud, especially for a preemie,” says Elizabeth.

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.  After that, she remembers how “the room had gone from loud and crazy to nearly silent in the blink of an eye.”

rare disease omphalocele Beckwith-Weidemann Syndrome

Photo provided by Thoma family

Doctors performed the omphalocele surgery and everything went extremely well, however, Obie had trouble breathing due in-part to a large tongue.  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.  Approximately 10-15 percent of cases of this syndrome run in families and show autosomal dominant inheritance.

In the maternity ward, Elizabeth recalls the difficulty of being apart from Obie: “I 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.” A few days later, Obie had a seizure and was found to have bleeding in his brain.  Further testing showed that his brain had not developed properly and he would not be able to sustain his life.

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

withparents

Photo provided by Thoma family

After friends and family members asked if there was anything they could do, Elizabeth and Chris posted on their blog about Giving for Obie, 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.

“This type of support (simple as it is) is extremely helpful for families when a loved one is diagnosed with something rare and foreign,” they say. Obie’s parents share their story to celebrate everything about Obie and in case their experience is helpful to others.  They began their blog, “Our Little Beastie Blog,” about a month after Obie’s omphalocele was discovered.

“Obie brought sunshine into our lives from the very beginning.  He changed the way we see the world.  Losing him cast a gray cloud over everything, and at times it felt like we’d never see the sun again,” says Elizabeth.

Earlier this month, Elizabeth and Chris announced that they are expecting their second child.  “We know a rainbow baby won’t replace Obie, but we also know that we are ready to be parents to a living child.” Elizabeth also writes a weekly Bump Day Blog over at Pregnancy After Loss Support.  “It’s both comforting and terrifying to know other people who’ve experienced child loss,” she says.

They are grateful to the generosity and gifts given to them to memorialize Obie.  They say having physical things to see and touch has been helpful and donations make them smile. “The mail brings us a smile when we see a thank you letter from one of Obie’s favorite charities. We’re tracking the Obie donations we know of and hope to continue doing so.   Thank you to those donated in honor of Obie… The notes and gifts we’ve received make us smile, and knowing our son has touched others has real meaning.”

If you are interested in making a gift to NORD or in honor of a loved one, please visit our Ways to Donate page or contact Ahleum Morris, amorris@rarediseases.org.

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