Kara Strozyk was expecting a normal ultrasound at a routine prenatal appointment with her OB-GYN in Olympia, Wash., 19 weeks into her pregnancy. What should have been one of the best days of her life, quickly turned into one of her worst. “How does he look?” Strozyk asked the ultrasound technician.
The ultrasound image revealed the unthinkable, an abnormality with the baby’s stomach, small and large intestine, spleen and liver; they appeared to be in his chest. Strozyk was in disbelief. Her baby was prenatally diagnosed with a(CDH), a hole in his diaphragm, a potentially life-threatening condition.
The advice she received only added more fear to the diagnosis: “Stay off the internet.”
“Obviously, I didn’t listen,” said Strozyk. “I had never heard of CDH before. As soon as I got home I immediately began to do research. I got on Google and searched for as much information as I could.”
Every online search came up with a similar statistic. The odds of her baby’s survival, according to her online searches, seemed grim: 50%.
“His condition seemed really bad,” said Strozyk. “We decided we needed a second opinion.”
Finding the strength to be hopeful
Strozyk and her husband moved from Olympia to Seattle and switched their prenatal care to the University of Washington Medical Center (UWMC).
After consulting with the team at UWMC, Strozyk and her husband determined the best place for their baby to receive treatment after he was born was at Seattle Children’s Hospital. They planned to have him transferred immediately after birth, with the help of Seattle Children’s transport team, who are national leaders in safe newborn transport.
About 1,600 babies are born with CDH every year in the U.S. and Seattle Children’s is one of the only hospitals in Washington that can provide Extracorporeal Membrane Oxygenation (ECMO), which can be used to provide life support if a child’s lungs aren’t functioning properly, which can occur in babies with CDH.
“Seattle Children’s has a very high survival rate for children born with CDH. We felt confident in our care team, but it was still an uncertain situation,” said Strozyk. “I still had to prepare my heart for the worst. I was preparing to be shattered.”
Strozyk didn’t organize a baby shower and never decorated a baby’s room. Strozyk and her husband waited 20 weeks after their first ultrasound to see if they would have a baby to bring home.
Through the internet they connected with other families going through similar situations to find support. It gave them solace to know they weren’t alone, but the wait was still excruciating. They met families who delivered healthy babies with CDH and also families who lost their babies. The situation for Strozyk was heartbreaking.
Surviving the transfer
On Aug. 2, 2013, little Alden Strozyk was born. As soon as he was stable, he was transferred to Seattle Children’s Neonatal Intensive Care Unit (NICU).
Only hours after giving birth, Strozyk was right by Alden’s bedside.
At four days old, Alden underwent surgery to fix the hole in his diaphragm. Dr. Patrick Javid, an attending surgeon in theat Seattle Children’s, performed the surgery.
“As soon as we met with Dr. Javid, a wave of peace came over us,” said Strozyk. “He was calm, confident and thorough. I asked him the same questions over and over again. And each time he answered them like it was the first time I asked. We loved him from the beginning.”
“Together, we talked through the surgery,” said Javid. “There are obviously some risks when going into the operating room, but we built a relationship of trust. We do more CDH cases than any other hospital in the region. Alden’s care went above and beyond just the operating room. It really required a multidisciplinary team. For a condition like CDH, that is complicated and complex, you want to be at a center that sees that condition as much as possible. And that’s here.”
Recovering from surgery and finding hope
Today, Alden is a happy, healthy, babbling 21-month-old toddler. Like many children with CDH, Alden may have ongoing health issues throughout his life, and need to be seen by specialists at Seattle Children’s for continued care, but the Strozyk family is happy to tackle those issues as they arise.
“You would never know by looking at him that he had CDH,” said Strozyk. “He gets tired, but he’s just like any other toddler. He loves to play and still manages to wear us out.”
Having gone through such a long, tenuous journey, Strozyk decided she wanted to help other CDH families and offer hope and support to them, like she received from other families. Strozyk started a closed Facebook group with a few other mothers she had met at UWMC and Seattle Children’s. The group was created for families in Washington who have children with CDH, or are expecting a child with CDH.
“I wanted to help others,” said Strozyk. “As we were dealing with the diagnosis, we found support groups through the internet. We met many families with babies born with CDH, many through Seattle Children’s. We’re all really close, almost like a family of our own.”
Just ask baby Nolan, a CDH survivor, who was featured in a RunDisney video crawling in the Diaper Dash at Disneyland. After Nolan was airlifted from Olympia to Seattle Children’s and diagnosed with CDH, Strozyk and her husband met with the couple to offer their support and advice. Now, they’re good friends that share a beautiful bond as CDH warriors.
To donate to research at Seattle Children’s for CDH, please visit the CDH Warriors of the Pacific Northwest Guild website here.
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