Ty's Story

Ty was born on 09.02.09, weighing 7 lbs. 12 oz. and was 21 1/2 inches long. He was an instant blessing to our life and was so beautiful and perfect. On day one of life, Ty had what the doctors call an Apparent Life Threatening Event. He was lying on his back on the bed in the room with Lauren and the nurse when he began to cough up mucus and turned blue. The nurse was unable to get him to begin breathing so she pushed the emergency button and he was rushed to the NICU at Baptist Hospital. They were able to stablize him at Baptist but later that evening he was transferred to Arkansas Children's Hospital. Several days passed and Ty had failed multiple attempts to be taken off of the ventilator. The doctors thought that he may have had a small jaw and that it might be pushing his tongue into his airway making it difficult for him to breathe. They then decided to take him to the operating room and perform what they call a mandibluar distraction which is basically fancy talk for moving his jaw bone forward. The doctors surgically broke his jaw and placed plates and screws so that they could move his jaw forward 15mm over the course of about 10-15 days.

During all of this Ty was still on the ventilator and was also having trouble passing stool without assistance from enemas, etc. The doctors did several tests and found that he had a disease called Hirschsprungs, which is a congenital disorder of the colon where there is an absence of ganglion cells which causes chronic constipation. Ty was diagnosed with Hirschsprungs on 10.01.09 and underwent surgery to place a colostomy that same day.

Once Ty had recovered from the bowel surgery and from having his jaw moved forward 15mm, they continued to try and take him off of the ventilator and always had problems. They eventually did a bloodtest that was sent to Chicago, IL to test to see if Ty had Congenital Central Hypoventilation Syndrome (CCHS). The test came back a few days later positive for CCHS and Ty's specific mutation is 20/33. More information about CCHS can be found at www.cchsnetwork.org.

Ty was taken back to the operating room on 11.02.09 for a tracheostomy, GT placement (feeding tube), and removal of the plates in his jaw (they were left in to help his jaw to harden). Ty was transferred out of the NICU and transferred to the ITU in the middle of November. He traveled to see Dr. Weese-Mayer in Chicago in January of 2010 and was discharged to come home for the first time on February 5, 2010. He has had to go back to the hospital several times since then for various reasons a couple times requiring surgery, and the longest time he has ever been at home was for almost 2 months.

Most recently on January 1, 2011, Ty had a seizure while he was in Texas and was medflighted back to Arkansas. He ended up having a MRI of his head and abdomen on 01.04.10. The MRI of his head was normal but the MRI of his abdomen showed a large tumor that is on top of his liver, pushing up one of his kidneys, goes around his aorta and inferior vena cava, and wraps around his spine. They took a biopsy of the tumor and we are still awaiting those results to see what the next step will be. Please pray for healing for our sweet Ty and we will keep this page updated. We love you all.

Update - The results of the biopsy came back and Ty has been diagnosed with Stage 4 High Risk Neuroblastoma, it has also metastasized in his arms and legs.  He has gone through 3 rounds of chemo and it awaiting more.  Thank you all for you prayers for our little man!