Imagine booking a flight to Italy to see everything you have always dreamed of. The anticipation has built up and the plane finally lands and you hear “Welcome to Holland!” Holland? We prepared to see the Colosseum, The Michaelangelo David, and the Gondolas in Venice. How does Holland align with our plans? Although Holland is not Italy, Holland is a different path. The region runs at a slower pace, “But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.” This is a poem, “Welcome to Holland,” by Emily Perl Kingsley that couple Houston and Kristin Dragna have used to describe their beautiful journey with their daughter Josephine Holland Dragna.
Morgan City native Houston Dragna and his wife Kristin met after she moved to Morgan City. After marriage, they found out they were going to welcome their first child in 2018. Kristin went to a routine pregnancy checkup for an anatomy scan and glucose test alone since her husband Houston was working that day. It was this day that changed their lives forever.
During the anatomy scan, Kristin recalled being able to tell something was wrong which was confirmed when she was called into the doctor’s office. They had a hard time finding the baby’s cerebellum which can indicate a spinal defect. “I had no idea what most of these things they were saying meant,” she said. “They said Spina Bifida, but I didn’t know what that was.” This rocked Kristin’s world and she barely made it to the parking lot before having a breakdown.
Kristin called Houston with the news. “She called me and I knew something was immediately wrong,” Houston said. “I raced over there as soon as I could.” They were able to get an appointment with a high-risk doctor that very afternoon. Later that day, the high-risk doctor was able to take a closer look and confirmed it was Spina Bifida.
The couple celebrates that day, March 13, as “Feeny Day.” They celebrate how far the journey has brought their family since diagnosis day and how much God has shown his love to them during all of the scary times.
“Our medical team was excellent. There was never a point where they said the word termination,” Kristin said. “They never brought up that Spina Bifida was hopeless, which a lot of parents I’ve talked to have had that experience.” The medical team gave mom and dad a realistic view of what their baby’s life could be like, but they said they never negatively shared the news; it was never doom and gloom. The couple said they are grateful the team at Woman’s Hospital in Baton Rouge didn’t scare them about their child, “I can’t imagine my life without knowing my child,” Kristin shared. “Our life is definitely complicated and it can be exhausting, but I wouldn’t trade it for anything not knowing my own child.”
The termination rate for Spina Bifida is around 66 percent and Kristin said it’s partially because doctors simply don’t know much about modern medicine happening in the Spina Bifida world. “Kids actually have a good quality of life and they’re not just sad little creatures with broken bodies,” she said. “There’s a large spectrum. It’s called a snowflake complication because a kid can have the same lesion in the same place; one could walk really well, and one might need arm crutches to get around. You just really don’t know.”
Fast forward to June 24, 2019 – delivery day! They had a waiting room full of supporters. They also had another surprise the day sweet Josephine made her debut; they waited until delivery to find out the baby’s sex!
Houston explained the day through his eyes: “She literally had a hole in her spine, so when she was born, it looked like an open wound, for the lack of terms, on her back. That’s why a C-Section was highly recommended.”
After Josephine was born, Kristin said she was only able to see her for a little while, but didn’t get to hold her until two days later, “There was an overwhelming sense of peace to finally be able to meet her and see her. It was very surreal, but it was very hard to not be able to hold her,” she said. “The whole birth experience that most mothers want, like to have your baby on your chest and everything is good in the world, we didn’t have that.” Houston chimed in, “It was hard. She had back and brain surgery within the first week of her life.”
With Spina Bifida, the back has to be closed following delivery. At just a couple of days old, Josephine had a graft done to close her back, which mom described as a little patch quilt. After the surgery, it can lead to Hydrocephalus due to the body not being able to drain spinal fluid correctly, which did happen to their daughter. After her back surgery, the spinal fluid then started to build up because her little body couldn’t process it. A few days later they had to implant a permanent shunt in her head. The shunt has a tube that drains excess fluids into her abdomen to keep her fluids and pressure normalized.
They eventually were able to go home where mom and dad had medical supplies and performed wound care, which Kristin gave props to Houston, “He doesn’t really do medical procedures well, but he stepped up as a dad and we were doing wound care every night…he was a super dad on top of everything.” Houston laughed while saying, “I’m the guy that passes out when I get shots. It’s a different situation when taking care of someone else. I was in the room for the C-Section and I was almost certain I would pass out, but I guess with the adrenaline it was fine.”
A few months later when she was six months old, Josephine’s shunt failed, which can happen with the device. It was putting pressure on her brain and her head grew by 7 cm. “It was really dangerous,” Kristin said. “We had to take her in and get that replaced to alleviate the pressure. It also took eight months for her back to heal properly. They also had to go to a plastic surgeon to revise the surgery because the blood supply wasn’t good.
However difficult her struggles are, Josephine has the willpower and the strength to move mountains. She is making strides in physical therapy and mom said it’s a beautiful thing to start seeing her brain reconnect pathways. Josephine is nonverbal and visually impaired. At six months old, the couple said she couldn’t do much, but now when she sees you 20 feet away, she fusses to be with her dad. “I call them inch stones,” Kristin said. “I love the term because it takes hours of work, sometimes months of doing the same skill that other kids do, but when she finally does it, it’s the coolest thing. Just to see the fruit of all of her energy. She works really hard! She’ll be fussy for me, but when her therapist walks in, she’s like okay, let’s get to work. She has a really good attitude!”.
One of her most recent inch stones has been to physically move herself through space. At therapy, they put her on a skateboard and she was able to push herself, “She was so excited, she was like I’m independent!” Kristin said.
“I really want to brag on Kristin,” Houston said. “She put her teaching career on hold to be a full-time mom. If we had to put Josephine in specialty care, which we wouldn’t want to anyway because we feel like we need to be those people to take care of her, it would be her paycheck plus more. It’s the best situation for us.” He said he appreciates Kristin who goes through everyday care. Their daughter is in the Early Steps Program, so mom goes to four to five therapies a week with her. “Kristin facilitates and goes to all of the doctors’ appointments, specialist visits, all of the state grants that we apply for, and everything in between. She has really been a superhero to be able to do all of that on top of being a great wife and keeping the house clean as much as possible, even with me destroying it all the time.”
Kristin also shared her gratitude for her husband, “Houston has been working so hard so I can be home so that Josephine can get all of the care that she needs. His day job, and his side-hustle with photography, he’s really been taking care of his girls.”
The couple said they are frequently asked if Josephine will ever walk. “If she can enjoy herself and have so much more freedom in a wheelchair, why would we not want that for her?,” Kristin said. “It’s been a lot of reframing how I thought about disabilities; we’re still figuring it out as we go, and talking about her in a way that honors her as a person. It’s been interesting navigating that and listening to what disabled adults say about how they feel about things. We’re trying to learn those things now so that as she grows, we treat her like a human.”
Houston said Josephine is her own little person already and although she’s nonverbal, she doesn’t hold back when it comes to telling you what she likes or doesn’t like, “She acts silly sometimes, she gets grumpy a lot. It’s very clear what she wants, she has her own little personality,”
Kristin is passionate about treating those with disabilities as humans versus seeing them as broken people. She has created a Facebook group, Josephine’s Journey, to not only tell the journey of Josephine, but to also advocate for disabilities.“Spina Bifida is not a death sentence. I feel like if I can help one person who just got a diagnosis, that will honestly make my life,” she said. “I would tell parents who are in the shoes we were in on diagnosis day to take it one day at a time. Kids will surprise you and it’s definitely a grieving process. I feel like every special needs parent grieves the life you thought your child was supposed to have, but it also makes you a person who you thought you would never be. Your kid will change your life and in the best way.”