'My baby suffered these symptoms for a year before being diagnosed with rare heart condition no one has heard of'

Harper in hospital
-Credit: (Image: Jam Press)


Every parent worries when their baby cries - but for most, it's simply a sign that a nappy needs changing or that it's dinner time.

However, mum Christyna knew something wasn't right when her daughter Harper Berry suffered a slew of nasty symptoms in the first few months of her life. The tot struggled to gain weight, would often projectile vomit and constantly cried. Doctors already knew Harper had a hole in her heart before she was born, and she had received a pulmonary valve stenosis diagnosis. This is where the valve is too narrow, which causes the ventricle to pump harder to get blood to the lungs.

However, Christyna and dad Robert - from Pennsylvania, US - suspected something else was at play, and eventually managed to refer their daughter to a geneticist at 13 months old.

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Christyna with her partner, Robert.
Christyna and Robert knew something wasn't right -Credit:Jam Press

"I knew things weren't right, but I couldn't get anyone to listen to me," the mum said. "I was concerned for the future when we found out her diagnosis.

A blood test found the root cause: Harper had a rare condition estimated to affect just one in 1,000-2,500 babies called Noonan Syndrome. The genetic disorder usually causes changes in the face and chest and slightly increases a child's risk of blood cancer. According to the NHS, the most common side effects of the condition include:

  • Unusual facial features, such as a broad forehead, drooping eyelids and a wider-than-usual distance between the eyes

  • Short stature (restricted growth)

  • Heart defects (congenital heart disease)

Harper Berry
Harper's mum had never heard of Noonan Syndrome -Credit:Jam Press

"I had never heard of it before," Christyna, 38, explained. "I wasn't entirely sure what we were dealing with or how severe it might be for her. Googling Noonan Syndrome gives a lot of information that can be scary but didn't necessarily apply to her."

The mum, who works as an influencer and delivery driver, said her search conjured up many physical features that didn't seem to apply to her daughter as not all of her organs were affected. She quickly realised that most children with Noonan Syndrome 'run their own race' and do things in their own time.

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"I don't expect her Noonan Syndrome to hold her back in any way or limit her life expectancy," she added. "I was also relieved when she was finally diagnosed. It gave me answers to a lot of questions and the ability to be more proactive. I was also able to connect with other families on Facebook and it made me feel less alone."

Harper has been seen by cardiologists since birth and is due to have heart surgery to repair the holes in her heart and, if necessary, fix the pulmonary valve. She has started eating more and is on growth hormones which are helping increase her height.

Harper in a car seat
Christyna says Harper's life won't be held back because of her condition

"Most mums take so much for granted – their children eating solids, taking their first steps, saying their first words, riding a bike," Christyna added. "All of that has taken a lot of extra work for Harper. So when it happened, it was that much more exciting."

The parents believe Harper will be ready for heart surgery in the summer, and say she will continue to have the 'typical life of a child'. Once the surgery is complete, Christyna says she'll feel like they've 'finally crossed the threshold of things unknown'.

"I feel like that's been something that's hung over us like a dark cloud," she said. "I've tried not to think too much about it, but it does catch up with me from time to time. I have no doubt that once she recovers from that she'll thrive and progress even more so than she has now. Harper has brought so much joy into our lives and I can't wait to see what life has in store for her."

Christyna now dedicates her life to spreading awareness of Noonan Syndrome on her Instagram page.

You can learn more about Noonan Syndrome here