The Kalk Family

Avery and her twin sister, Kylee, were born on Oct. 2nd, 2012. While Jenna was pregnant, Avery was diagnosed with a congenital heart defect but it wasn't until Avery was born that the extent of her diagnosis was known. Avery has Heterotaxy Syndrome, which is a condition where certain organs are formed on the opposite side of the body. Heterotaxy is very rare and survival rates beyond one year are low. Each heterotaxy baby has slightly different medical needs, often making their parents the most knowledgable person on their medical team.

Avery spent the first 80 days of her life in the NICU. During that time, she had five surgeries. When she was 11 months old, Avery traveled with her family to the Children's Hospital of Philadelphia (CHOP) for a heart surgery called the Kawashima Procedure. Previous surgeries and, especially, the Kawashima were done to prepare her body for her big surgery down the road, called The Fontan. She recovered so quickly and so well from the Kawashima that she was discharged early. Jenna and Spencer vowed to return to CHOP for any future surgeries.

On March 31st, 2015, Avery had the final heart surgery in the series - the Fontan. The surgery went without a hitch and she was taken to recovery. She started to wake up and seemed to be doing fine, so Spencer left to drive Kylee and Jenna's mom back to the hotel. While Jenna and Avery's infant sister, Norah, were with Avery in recovery, she suddenly arrested. CPR was done and Avery was placed on ECMO. Avery had seizure activity for the next 24+ hours. Jenna and Spencer have been told no less than three times since then that Avery wasn't likely to make it, but she continues to prove doctors wrong. She was successfully taken off ECMO after a week but now doctors suspect that Avery has suffered very serious brain damage. She continues to fight and we are so grateful but she still needs lots of prayers. You can read more about her journey at www.facebook.com/TheAveryKalkFanClub