Support for Baby Kaydyn #KaydynStrong

On Wednesday June 16th my Kaylan gave birth to our much anticipated Kaydyn Destin Westfield! Although Kaydyn made many attempts to cry upon birth Kaydyn showed signs of labored breathing. The Amazing NICU team at Erlanger immediately jumped in and within 1 minute had secured a safe airway for Kaydyn. The remainder of the day was a complete blur as Kaydyn went into respiratory failure and persistent pulmonary hypertension and literally fought to live.

Kaydyn has already beat the odds. Prenatally Kaydyn was diagnosed with a rare genetic disorder called Acampomelic Campomelic Dysplasia are rare form of congenital short-limbed dwarfism and is due to mutations in SOX9 gene family. There are only 100 medically documented cases of this in the world. This disorder is extremely life threatening and Kaydyn was only given a 30% Chance of survival at birth. Kaydyn however is in extreme critical condition and on June 22nd the doctors told us that there was no more that they could do for Kaydyn but being a fighter Kaydyn has now successful beat Persistent Pulmonary Hypertension.

Once the PPH was beat the next step was to evaluate the airway and address Kaydyn’s severely swollen Kidneys. After a failed attempt at a Bronchoscopy a second attempt was successful the view Kaydyns airway which revealed a severely floppy airway, Tracheomalacia, and a completely closed left nostril. The game plan was to first evaluate the nostril and get imaging to perform a surgery to reconstruct that nostril and that’s where things went downhill. During the imagining of Kaydyn’s skull it was found that Kaydyn had an almost 90 degree curve Kaydyn’s cervical spine. It was immediately apparent that Kaydyn was in extreme danger of paralyzation and at that point all doctors went hands off. Neurosurgeons were then called in to evaluate Kaydyn. They quickly came to the conclusion that Kaydyn’s case was far too complex for them to handle and we would have to seek assistance elsewhere at a facility that was much better equipped to handle Kaydyn’s case.

Reaching out to Vanderbilt and Le Bonheur’s it was quickly apparent that no one in the State was willing to accept Kaydyn. After a few days of searching Kaydyn was accepted to the best hospital to treat this. Nemours Children’s Hospital in Wilmington De. Kaydyn will have to be flown out on private medical air to get the treatment that Kaydyn needs.

All of this has put Kaydyn family in a great bind. Kaylan has only been able to hold Kaydyn on two occasions the first being 20 days after birth and Adrian has not yet gotten the opportunity to hold Kaydyn. Due to covid restrictions Kaylan will have to travel over 10hrs to Delaware alone to look over Kaydyn’s care as Adrian will have to stay behind in Tennessee to care for the other 2 children and continue to work with periodic trip back and forth as much as possible. We are reluctantly asking for any help possible to help cover the enormous amount of pilling medical bills, hotels, food, and the frequent travel back and forth from Tn to Deleware. We are in a fight for Kadyn’s Life and we are asking for you to join us in this fight. We are #KaydynStrong