Toby Austin Wood was born five weeks early on October 28, 2013. He was prenatally diagnosed with Down Syndrome as well as a sever AV Canal Defect (a large gap where the cross section of the four chambers of the heart connect). After birth Toby spent 2 weeks in the NICU on oxygen for breathing difficulties and a feeding tube due to an inability to eat. After 2 weeks in the NICU, they found that his aorta was closing. He was then sent to Nationwide Childrens Hospital in Columbus for immediate surgery to repair his aorta, as well as place a band around his pulmonary artery. The band was put on in hopes that it could postpone his major open heart surgery for his AV Canal defect until he reached 9 months old. After a few weeks at Nationwide Toby got to go home. Unfortunately, we ended up back in the hospital shortly after due to increased symptoms from his defect.The doctors tried a few different medicines and though nothing worked, still sent Toby home in hopes that he could last until six months of age to have his major surgery. We were home for the week of Christmas and on December 26 Toby was readmitted to the hospital. His open heart surgery to repair his AV Canal defect was on January 6. Toby’s health went downhill immediately following surgery. He remained on the ventilator for three more months while he fought four different infections. There came a point when doctors thought that he would not win the fight against the many infections, but as Toby has done before, he defied all odds! There were complications during surgery that have caused him to be dependent on a pacemaker for the rest of his life. After putting off the pacemaker surgery as long as possible, Toby went to the OR while fighting his infections The odds were not in his favor during surgery, but yet AGAIN he defied all odds and surgery went great! After a long fight, Toby was able to come off of the ventilator and we finally got to take him home in April! He came home on oxygen and with a feeding tube. Since coming home he has been in and out of the hospital constantly, always fighting an illness or constant reoccurring respiratory distress. We have been undergoing multiple invasive tests to figure out what is causing his episodes of respiratory distress. Since these tests, Toby has been diagnosed with tracheomalacia and severe lung disease. Majority of his lung space is scar tissue. We also found that he has an extra bronchiol that could be holding infection. We are still trying to figure out the best way to help him. Toby is still constantly fighting to stay healthy. Days consist of numerous appointments and doctors, that is if we are not inpatient. But what you will notice on this page is that despite all of the hardships, we are happy and grateful that God has given Toby the strength he needs! Everyday can be tough, but Toby has made so much progress! He is the light of our lives and we have learned so much from him. If you ever have any questions about Toby or any of his various appointments or illnesses, don’t be afraid to ask! We are here to raise awareness and to share with others, the amazing strength of our bundle of joy! Thank you so much for being apart of our journey! Mom, Dad and Toby are so glad to share our lives with you!
You can follow his progress daily through his Facebook page
- Brian Hudson
- Becca Bonilla-Hartman
- Elise Calderwood