"CDH has not defined him." - Austin's Story

Austin “Tug” Williams.
Austin’s story starts out like a lot of CDH stories. As we approached our first sonogram in October 2004, my husband and I were excited to see his ten little fingers and toes. We were excited to receive the “first” baby picture to share with our family and friends. Instead, the day was marked with confusion and sadness as the radiologist told us our son would be born with a Congenital Diaphragmatic Hernia. His chance of survival was less than 20%. Survival. Diaphragmatic Hernia. Those words rang over and over in our minds as we left the office, not even knowing the gender of our baby.

After the news, an appointment was set to meet with a local NICU doctor to discuss the prescribed plan if our child was to be born in Phoenix. After the meeting we knew hope was little for our son and we needed to research what else was available. Luckily, we came across the Real Hope for CDH Website (then called Kay’s Kids). A list of parents names were on the site. Another family had gone to Dr. Kay’s from Arizona and we spoke with the family. She told us her unique story and the quality of life her beautiful little girl was given by Dr. Kays. We knew speaking to Dr. Kay’s was a must.

We schedule a phone meeting and discussed our son with Dr. Kays. In speaking with him on the phone, we knew immediately we needed to go see him. In December we visited Dr. Kays and we were impressed with his dedication to CDH babies. What stood out was Dr. Kay’s stand on wanting CDH babies to live a quality life. He was honest that the statistic of Tug’s survival was 50%. This was the most hope our unborn baby had received. We found the right doctor to lead the charge on our Tug’s survival.

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On Valentine’s Day 2005 my husband and I left Arizona and arrived in Florida. On February 27, 2005 Austin was born. He was affectionately given the nickname Tug. He weighed 5lbs and was 19 inches long. Tug spent a total of three months in the NICU. During his time in the NICU he was lovingly cared for by Dr. Kays, nurses and respiratory therapists. He had his first hernia repair at 9 days old. A g-tube and nissen were placed at 2 months old to assist with feeding and reflux. At three months, Tug arrived home to Phoenix.

In eleven years, some of the memories from the NICU have faded. We have a reminder of Tug’s beginning of life through a scar that remains on his chest. However, the gift we have been given through Dr. Kays’ care is a son who is not afraid to be his own unique self. If you met Tug today you would see that CDH has not defined him. He is a typical active eleven year old. He plays basketball as the shortest kid on court, ice hockey as mighty defenseman, soccer as a power forward. Tug also is a member of the school band. He excels in school getting A’s and B’s (and sometimes an occasional C). His younger brother and he have a typical sibling relationship with rivalry and love. His health is good, and yes he still struggles with getting all those calories. We no longer have worries of oxygen, keeping him away from others or how a common cold will affect him. (He only missed 3 days of school last year.) Today, Tug is a typical child who dreams of becoming a future comedian or NHL Referee. All this possible because of a decision to have his beginning of life care under the watchful eye of Dr. Kays.

olderJake Nelson