Celebrating CVI dads: Shea and Koen

Shea Nicolson, Koen's father, shares how he navigates mental health alongside his son's CVI and HIE diagnoses, plus strategies for success.

Shea hold his son Koen showing him a large red adaptive communication switch.

Auckland couple Shea and Merel worked with a midwife to create a birth plan that involved a live water birth, cutting the umbilical cord together, and holding their firstborn son. But after what Shea Nicolson called a “perfect pregnancy,” the birth of their baby, Koen, did not go as planned. 

“We were 41 and four days… Nearly two weeks overdue, but everything was fine,” Shea shares. “My partner had been in early labor for about 36 hours. We’d seen the midwife at about seven o’clock,” he says, “Within five minutes of leaving her and getting home, my partner had a seizure.”

Although they immediately called the emergency line, there were delays. This was the beginning of “everything going wrong,” Shea says. 

Koen was born via an emergency C-section. Despite also having seizures and requiring multiple attempts of resuscitation, his medical treatment wasn’t focused on his lack of oxygen or blood supply to the brain. 

On top of that, the hospital’s cooling device that induces therapeutic hypothermia, which slows down brain activity and has been shown to reduce the chance of brain damage, proved to be faulty. The therapeutic cooling window of 6 hours from birth is considered crucial, but Koen didn’t get the cooling treatment until 10 hours after birth.

Shea holds infant Koen who is hooked up to tubes in a hospital room.

During the cooling treatment, Shea wasn’t able to hold or even touch his newborn son. “There was no real contact,” he shares.

After 72 hours of hypothermia cooling and 16 hours of rewarming, Koen’s MRI revealed severe HIE, or hypoxic-ischemic encephalopathy, a type of brain damage that results when the brain is deprived of oxygen before or shortly after birth. Even after rewarming, contact with his son was limited. “You just have to hold [his hand] as still as possible for short periods of time,” he remembers.

Meanwhile, Merel stayed in the ICU for two weeks after her unexpected seizure and emergency C-section. During this time, Shea described running “between the ICU and NICU,” and added that “[Koen] spent another week in hospital before he came home. We went back to hospital for another three weeks because he was having seizures at home.”

Koen was also eventually diagnosed with mixed-tone quadriplegic cerebral palsy and Cerebral/Cortical Visual Impairment, or CVI.

According to Hope for HIE, two to three in every 1,000 full-term births will be affected by HIE every year. HIE is widely known as a common cause of CVI, but CVI is alarmingly undiagnosed within the HIE population. Similarly, up to 70% of kids with cerebral palsy have CVI. But in the U.S., only 20% of total suspected CVI cases are actually diagnosed.

Addressing birth trauma and mental health for dads

Shea and Merel were first-time parents. This traumatic birth and multiple serious diagnoses are “not what you expect at all,” Shea says. These experiences generally aren’t planned for, especially with an uneventful pregnancy, and they are certainly extremely difficult for both parents.

Although we still have a ways to go to support mothers who experience a traumatic birth firsthand, support does exist. What’s less considered is how birth trauma affects their partners. Feelings of guilt coupled with the societal expectations of men to be stoic and strong make it difficult for fathers to acknowledge the mental health concerns that one in 10 experience after childbirth, and birth trauma increases this risk, according to Psychology Today

With that in mind, Shea says his most consistent coping mechanism has been to stay busy and have a constant routine, although “every day is slightly different. You have ups and downs, but that’s life.” He also mentions that he talks through things with Merel when things “go too low.” 

While most of his family time is constricted to after work and weekends, Shea recognizes that his partner “doesn’t get much free time through the day to do anything for herself.” Small efforts like looking after Koen and creating space for Merel to “take however long she needs to do her own thing” can go a long way. Right now, his goal is to “manage the load between us as best we can so that we’re happy,” Shea says.

Shea also demonstrates that he has learned to push back against the stigmas surrounding mental health, especially for men, with the help of “so many amazing support people and family and friends.” He wants to tell other dads of medically complex kids that it’s okay to not know everything: “Don’t be afraid to ask. Ask lots of questions.”

He adds that dads should not “shy away from being a voice.” He says, “It just shows that you care, and that’s the best thing—is putting your kid first… That’s more important than anything else.”

Shea holds his son outside in a park. Koen looks up with a mischievous look in his eyes.

Don’t be afraid to ask. Ask lots of questions.

Shea Nicolson, CVI Dad

Advocating for more inclusivity for fathers, especially in the medical world, may benefit more than just a mother’s counterpart. During his family’s hospital stay, Shea discovered that the travel services offered to and from the hospital were for mothers only, not for parents or other caregivers. He also points out that “the hospital that we went to is in a really high Pasifika area, where a lot of the grandparents and aunties and uncles are the main caregivers, so they miss out on the free parking and all that sort of stuff.” 

To take it a step further, providing support and resources for disability dads, in turn, supports their children with disabilities. From the beginning, Shea dove into learning what he could about HIE and cerebral palsy, both of which he already had an understanding of. “But CVI was completely new to me,” he says.

Creating strategies for Koen’s success

Although “the initial expectations for him were very low,” and NICU pediatricians and neurologists said that Koen would need to tube feed and use a wheelchair for the rest of his life, his parents never gave up hope. Then at 4.5 months Koen began fully oral feeding, and has continued to orally feed. Today, Koen is standing with supports, and slowly walking using his walking frame.

Aerial view of Koen floating on his back in a pool while Shea holds him.

Equally important, Shea and Merel never stopped searching for resources and fighting for access for Koen. They are leaning into strategies and adaptations that help Koen access his world. 

BLENNZ, the Blind and Low Vision Education Network of New Zealand, was the family’s first stop. Koen eventually got a vision assessment with BLENNZ last October. Also, resources on CVI Scotland, along with CVI Now and community Facebook groups like CVI Now Parents, have been Shea’s go-tos. What he’s learned so far has helped empower him as a parent—one who knows that every child can learn. 

Speaking with Nicola McDowell, who is a New Zealand-based adult with CVI and educator and researcher, has also provided a unique and invaluable perspective. “Obviously, you can read all this stuff, but then her understanding makes you think differently,” Shea explains. Their blossoming working relationship perfectly encapsulates why it’s so important to center voices of individuals with CVI. Shea says that when he and Merel go out with Koen, they now ask themselves, “How can we make it easier for him? So he’s not getting overstimulated, and gets grumpy, or tired, or still enjoys it.” He mentions that he tries to accommodate for Koen’s visual field abilities, sensory integration, the impact of clutter, color, light and more.

As a parent of a child with CVI who has received a very early diagnosis, “You have to think like someone who has CVI,” Shea says. “The more you understand what your child’s going through, the more you can help.” Early on at home, Shea was quick to adapt “the little things, like having a less cluttered room” and curtains to block outside light “so we can do light activities.” Recently, Koen is also doing orange tent therapy.

Using switches to communicate has also been a game-changer for Koen and his family. “We have got a vibrating pillow [switch]. He loves his back being patted and vibrated, so when he touches that and it just goes off. It’s just like the happiest face that you could imagine.”

Young Koen sits on the couch with a vibrating pillow on his lap. He repeatedly uses his wrist to push a large, yellow adaptive communication switch to turn on the vibrating pillow and smiles.

Today, Koen has a PODD book for communication, which his parents use to let him know what we’re doing. He is also using 2 switches with his iPad to make choices and play CVI-friendly games.

He smiles when he talks about “those other little things” that he’s witnessed as Koen has new experiences. “When we go out somewhere new, we always… touch all the different things.” On a trip to the beach, “You could just see [Koen going], ‘Oh that’s different,’ feeling the sand and the grasses and the shells.”

Shea fondly remembers a steam train ride that Koen enjoyed at 6 months. “He really enjoyed the vibration and the noises.” For Shea and his small family, joy continues to be a crucial element in nurturing a child with complex needs like Koen. 

Empathy is crucial, too. “Adjusting to your kid’s needs is going to give them the best chance at whatever they can achieve,” he says. And this adjustment involves a child’s whole team. Sometimes, prioritizing empathy for a child means pushing back against medical providers in order to get a diagnosis or asking for a different provider altogether. “Just keep pushing,” as Shea says.

Adjusting to your kid’s needs is going to give them the best chance at whatever they can achieve.

Shea Nicolson, CVI Dad
Shea holds Koen, resting his head on his son's.

The transformative potential of joy and empathy has cultivated a pathway for Koen to access his world. In these first two years of Koen’s life, Shea has also reframed his mindset around parenting. At the time of Koen’s birth, Shea says he thought to himself, “This changes everything and nothing is going to be how we expected,” yet he continues, “but being new parents, nothing is going to be how you expected.”

And now, because he leans on the expertise of CVIers and the research, fights for his son, and never gives up hope, Shea has reframed his mindset around parenting. He’s in it with Koen, creating access to learning, and is better able to understand his child’s world.