Team Member: Pam Williams
Deena Daloisio wrote -
To know Scott and Sara Novak as a couple, is to love them. To know them as parents, is to truly know what it feels like to be in the presence of love and strength. On June 2, 2014 Scott and Sara faced what no parent should ever have to endure, the loss of their beautiful baby boy Gavin.
When Sara found out they were pregnant, The Novaks were beyond excited with the idea that they would soon be a family of four! Their three year old son, Ryan asked countless questions and practiced with his own baby doll in anticipation of being a big brother. Gavin decided to make his appearance into the world two weeks early when Sara's water broke in the middle of her fourth grade classroom and she was rushed to the hospital.
Gavin's delivery was completely normal and they were presented with a seemingly healthy little boy with a head full of crazy, spiky hair. Gavin was a delightfully sweet baby with chubby cheeks and a set of spectacular blue eyes! They were discharged and sent home with all the joys that a new baby brings; so many amazing days were ahead of them. There was no indication that they should expect anything less.
During his routine check up at the doctors, the pediatrician picked up on some things that concerned him in regards to Gavin's feeding habits. The Dr. sent them home with strict orders to be sure he ate every three hours. Later that afternoon, the Novaks received a call that they would never forget. They were told to bring Gavin back to the doctors right away as his newborn screen showed a possible metabolic disorder. On arrival at the doctors office, the pediatricians concern grew and they decided that Gavin needed to be sent to the Emergency Room at Connecticut Children's Medical Center right away via ambulance. Once at CCMC, Gavin went through a ton of medical testing, including a spinal tap to try and figure out what was wrong. He spent a few days there and then was transferred to Yale Children Hospital to see the Genetics team. Gavin had tested positive for a severe metabolic disorder called VLCADD.
Once settled at Yale, confirmatory tests ruled out VLCADD, so doctors were perplexed as to what could be causing his feeding issues and lethargy. About this time, everyone started to notice some extreme jerks. Whenever he would wake up, he would do so with an large startle and his whole body would twist. Days later, after multiple visits from doctors, the neurologists decided to give Gavin an EEG. The news that came after that could be described as some of the worst news you could possible receive.
Gavin's brain showed very minimal activity. His EEG was similar to someone that was in a medically induced coma. There would be no activity, and then a disorganized burst. This explained why Gavin couldn't eat on his own. His brain was misfiring and having seizures. In the next couple of days, his breathing started to suffer as well. Gavin was transferred to the Intensive Care Unit to monitor his breathing more carefully and give him some support. After many medical meetings, consults with specialists and testing, it was determined that Gavin likely had Ohtahara Syndrome, an extremely rare and severe form of infant epilepsy. It only accounts for 0.2% of all epiliepsy cases.
In an effort to determine the cause, Gavin had so many blood tests that he needed a blood transfusion. These tests were sent all over the world, because this disorder is so rare. Many have yet to come back because they take so long to complete. No matter what the cause, Ohtahara is a progressive disorder, with no known treatment and has a very poor prognosis. The Novaks were told that Gavin would likely not live past two years old, with many trips to the ICU for lung infections, pneumonia and seizures and would need a lot of breathing support. Scott and Sara had to start to make decisions that no parent should have to make.
After two weeks of being in the Intensive Care Unit, Gavin was slowly weaned off of breathing support and was able to breath on his own, but still required a feeding tube. As he no longer needed the breathing support, the next question was, where he should go. They transferred him to Hospital for Special Care where he was cared for during the last weeks of his life. Gavin enjoyed his time there only being attached to one tube. He was able to go outside for daily walks with his family and even had picnics!
On June 2, 2014, Sara received a call at home that Gavin had stopped breathing and they were transferring him to CCMC. Once the Novaks arrived at the hospital, it was clear to them that Gavin had no more fight left in him. He passed away peacefully surrounded by the love of his family.
Although the Novaks are living every parents worst nightmare, they are extremely grateful for the love and support that they have received from friends, family and their community. They feel blessed for every day that they had with their Gavin and in that short time, learned so much about love, strength and compassion.
Please consider making a donation in Gavin's honor. The Novaks would like to use the funds raised by Gavin's Gifts to help defer burial costs, give Gavin a nice headstone and pay for the medical bills that may arise when his genetic testing is complete. Most importantly, Scott and Sara are extremely dedicated to doing acts of kindness in Gavin's name. Their goal is to help families with children that are struggling.
There is a Facebook page called Gavin's Gifts. Please take a moment to "Like" this page so you can stay updated on everything the Novak's are doing with the funds raised. And remember, Keep Calm and Love Gavin!