My name is Landen Spry and I am from Mocksville, NC. This is my Story.
“SUPERBOY” was born into this world August 16,2012 not being able to eat or have bowel movements. Our son is 8mo old and is a VACTERL baby. This is a rare syndrome/association only 20 children are born a yr with this.
VACTERL association (also VATER syndrome) is a non-random association of birth defects. Each child with this condition can be unique. At present, this condition is treated after birth with issues being approached one at a time. There are seven acronyms.
*A-Anal atresia (imperforate anus)
Landen has four of the seven a VSD- “hole” is considered large, it is in the wall between the two lower chambers of the heart, imperforated anus, esophageal atresia & tethered spinal cord. We knew at birth of these findings and were in the NICU at Baptist for 50 days. Landen was connected on day five of life which we have had no issues with, he had a Mic-key button placed for feeding & colostomy bag on day 2 of life. We were sent home after 50 days eating full feeds by mouth. Nov 24 Landen stopped eating, thank God we had a Mic-key to turn to for feeding and keep him thriving. He was choking/gagging, turning blue, basically drowning in his own secretions/saliva. These episodes were getting more frequent and scary making us always on guard day & night to ensure his safety.
We decided to self refer our son to Boston Jan 29th and are still here in the ICU! We were ever so happy to hear that Boston found his problems and best of all we were told they can ALL be fixed. Their findings were a genetic abnormality stricture in the lower part of the esophagus, a recurrent fistula off the trachea & his air way was floppy. We are glad to be in Boston where we have received the BEST of care by doctors & nurses who see this daily. We are grateful all his issues can be fixed. It’s been a long road but were getting there one day at a time and one surgery at a time. We can see the light at the end of the tunnel. You for sure HAVE to be the advocate for your children. Since we have been here we had a stricture resection & re connection which we are very grateful they were able to make the connection, 10 hour airway surgery, several dilations of the esophagus AND open heart surgery just this past Monday the 22nd. Landen is doing extremely well and recovering nicely. We are not done with our journey and still have the imperforated anus, tethered cord & some esophagus dilations but we are ever so GRATEFUL to be where we are today and the progress Landen is making is AMAZING. We stay focused and allow for a few set backs. We have never said never and we have never let up. We are very blessed for our support system. We look at this event in our life not as a problem but as a blessing that has changed our faith and has brought us closer to our gracious God. We have learned to never take things for granted and enjoy each and every moment of everyday. Landen has brought so much joy into our life and to many others. His challenges have made us stronger then we ever have been. We have met amazing people we now call friends we are all going through or have had battles exactly like us. We look forward to the day when we can come home to let Landen be a baby, for him to be able to make normal baby milestones at home, not in a hospital bed moles from home and for us as a family doing & being what parents do. God bless and THANK YOU for being with us on this journey. With much love & gratitude.