A single dad has shared online why his 3-year-old daughter is much smaller compared to other children her age.
Diagnosed with hypopituitarism, a rare pituitary condition, Nova Rose was born prematurely at 31 weeks, spending 80 days in the NICU before finally coming home.
Tyler Kane (@reallifehealthandfitness), from the north of England, posted a clip on TikTok to show his daughter’s small size. The caption read: “My little best friend, so tiny, so beautiful.”
@reallifehealthandfitness
“The video doesn’t do justice how small she is; she is half the size of other kids her age,” the 34-year-old told Newsweek.
Hypopituitarism is a rare disorder affecting hormone production where the pituitary gland—the small but vital organ responsible for hormone production—does not function properly.
Lisal J. Folsom, M.D., pediatric endocrinologist at Norton Children’s Wendy Novak Diabetes Institute, told Newsweek that the pituitary gland secretes a variety of hormones that are important for health.
“During childhood, some of these hormones are imperative for normal growth and puberty, and, if lacking, children can have short stature and lack of normal pubertal timing,” Folsom said.
In Nova’s case, her pituitary gland is underdeveloped and significantly smaller than normal, leading to a severe growth-hormone deficiency.
“There’s not much information about at all in terms of what’s publicly available to everyday people, even on TikTok and other social platforms,” Kane said.
He referenced the most-famous case: internet sensation Hasbulla, also known as Hasbik. He has a similar growth hormone deficiency but, for Nova, it’s more complex.
“Everyone is affected differently, and some people have more or less growth hormone production than others,” Kane said.
He and Nova’s mom, Anna Rose, were told that their daughter should grow as any other child now that her growth levels are normal, but her progress is still extremely slow.
Nova also has another rare genetic anomaly—she was born without hip sockets. In the coming months, she will undergo a double hip operation and be in a full-body cast for 12 weeks, adding to the family’s trauma.
Nova’s condition affects every part of daily life for her family; everything has to be adapted.
“Mentally, Nova is 2, but physically, she’s 6 months old. She wants to do all the things the big kids do, but she’s too small and can’t keep up or will get hurt so can’t be involved,” Kane told Newsweek.
One of the hardest parts is her daily growth-hormone injections—a torturous process for everyone involved.
“It’s not a nice experience at all,” Kane said. “At first, [we were] crying with her every night. We have our routine now, but we tell people if you can just put your kids to bed with a kiss and a story, you’re very lucky, because, for so many parents, we have to experience hurting our baby for their own good.”
Folsom recommended some helpful tools for parents dealing with a life-changing illness in the family, including self-care techniques such as breathing, ensuring balanced nutrition, getting regular physical activity, and making time for fun.
“Try not to limit your child. Allow them to participate in all the activities they typically would, as long as their health-care team supports this,” Folsom added.
Kane called Nova his “miracle baby” and expressed how lucky he felt that she is in the world at all. “We wanted a baby so much, and now we have one forever. I know this isn’t an optimal way of looking at things, but I’m confident that we can support Nova through everything she will face.”
Kane said he knows firsthand the emotional toll of raising a child with a rare condition. For other parents experiencing life-changing diagnoses, he added that they should give themselves grace.
“Parent guilt is real. The biggest struggle we face personally is that no one tells you you’re doing OK, and it’s hard enough with a normal baby, let alone disabilities,” Kane added.
“We all have days where it’s hard and upsetting, and we just wanted a normal life for our baby, and then there are the days we can see exactly why we were given such a special kind of love.”