In March 2018, at 28 weeks pregnant, they traveled to Philadelphia to get a second opinion on Avery Rose at the Children’s Hospital of Philadelphia (CHOP). Minneapolis had thought that Avery's giant omphalocele was isolated however they were sadly mistaken. After a 12 hour appointment at CHOP, the family was told that doctors in Philadelphia have discovered many missed diagnosis’.
Avery was found to have transposition of the greater arteries or TGA. TGA is a serious condition of the heart and requires almost immediate surgical intervention. However with her giant omphalocele, lung problems, and other conditions, it was an extremely risky and hard surgery and doctors were not sure that she would survive past the first surgery. Another misdiagnosis was a tethered spinal cord. All surgeons and doctors had gotten together and formed a plan for Avery that gave them a little more optimism. We are pleased to say that Avery was born on March 30 and has been a complete medical miracle.
Austin & Jordan have been in Philadelphia since March 5, and continue to remain there for Avery's care. Avery has had two heart surgeries, her spinal cord repaired, numerous procedures and recently had a colostomy. There are only 3 cases ever written about having all of these anomalies in one body - Avery is defying all the odds and is making medical history every day! We believe our rare Avery Rose will continue to make history and pray so very hard that she continues to be the toughest girl.
While medical insurance covers a lot of expenses - it does not cover costs of their rent, their utilities, their phone bills, car payments, insurance premiums, gas money or parking fees.
Any donation means a lot to this young family. Thank you all for your love and support!
- Stacy Holybee
- Marilyn Evenson
- Brooke Frable
- Clint and Gloria Kinsell
- Heide Otis
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