Baby Raven Prepares For 5th Open Heart Surgery

ALPHARETTA, GA — Many Patch readers came to know Nell "Baby Raven" Raines, the Alpharetta girl who won the hearts of many, as she prepared to have her fourth open-heart surgery in December 2016.

Baby Raven, who celebrated her third birthday on Monday, Dec. 10, continues to show joy and courage as she battles critical congenital heart defects along with multiple other medical issues, including caudal regression syndrome and gastrointestinal issues that require her to be fed with a G-tube in her stomach.

Raven and her parents, Mike and Ruthie Raines, will face a fifth open-heart surgery on Jan. 22, 2019, as the family will travel to Boston Children's Hospital for another operation. The Raines will need to travel to Boston for pre-op procedures on Jan. 17, and are planning to stay as long as a month for Baby Raven's surgery and recovery. While her 2016 operation was deemed a success, Raven still has aortic stenosis and developed scar tissue in the aortic valve.

Raven was born in December 2015 with a critical heart defect and, thanks to the generosity of the Alpharetta Public Safety Foundation, Stonecreek Church and others in the community, Raven and her parents traveled to Boston Children's Hospital in 2016, so she could undergo a nine-hour, bi-ventricle repair.

Raven spent most of the first 13 months of her life in the hospital, including undergoing three heart surgeries at Children's Healthcare of Atlanta at Egleston, all of which occurred before her first birthday. Raven was hospitalized recently with RSV, but was able to make it home before turning 2.

Because of her extended stay in the hospital, her sister Piper was not even able to meet her until she was six months old! Piper, who is now 4, loves spending time with her sister. Nell Estes, Raven's grandmother, said the three-year-old has "made so much progress." She can feed herself pureed foods, walk with the help of a posterior walker and can communicate with one- and two-word syllables.

"She is truly a miracle child and prayers for her continue to be answered in amazing ways," Estes added.

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Raven must have this critical life-giving surgery to allow adequate blood flow. Her medical bills are mostly covered by her disability insurance, but the costs related to travel to Boston and staying there for an extended time are staggering. For example, when the Raines traveled to Boston for the previous surgery, the cost exceeded $12,000.

The Raines continue to live with family in Alpharetta because of the extensive care and cost related to Raven’s medical issues. Now they are raising funds to cover expenses related to the trip to Boston, one of the 10 most expensive cities in the country.

Tax deductible contributions can be made through Intentional Legacy either on Facebook or by mailing a check payable to Intentional Legacy with “Raven” in the memo line. The address is 205 Nacoochee Drive, Woodstock, GA 30188. The full amount goes to Raven; there are no management fees. For more information, reach out to Elizabeth at IntentionalLegacyNonProfit@gmail.com. Contributions can also be made on the GoFundMe page.

Images via Nell Estes