A couple from Gloucester was left stunned when a routine A&E visit for their newborn’s suspected cold sore revealed a heart-wrenching diagnosis: a hole in his heart. Little Bertie Rees-Bryan seemed like a healthy baby until his parents’ world turned upside down. In February, at just six days old, they hurried him to the hospital after spotting a blister on his lip, only to uncover a far more serious condition.
However, during the examination, doctors detected a heart murmur.
Further tests revealed the shocking truth: Bertie had a hole in his heart, medically known as a ventricular septal defect (VSD).
Now, Gabrielle Bryan and Tyler Rees, parents of Bertie, are passionately urging other parents not to overlook any concerning signs.
Upon examination, however, medics discovered he had a heart murmur. Tests later confirmed he had a ‘hole in his heart’, known medically as a ventricular septal defect (VSD). His parents, Gabrielle Bryan and Tyler Rees (pictured), are now urging parents not to ignore any worrying symptoms.
As an Army sergeant, Ms. Bryan shares, “Initially, we thought it was just a cold sore, something seemingly harmless but potentially perilous for newborns.”
“But then,” she continues, “the doctors detected a heart murmur, and the following day, a pediatric cardiologist confirmed our worst fears—a significant VSD.”
Understanding and Coping with Ventricular Septal Defect
VSD occurs when there is a hole in the wall between the heart’s two lower chambers – the ventricles. This causes blood to leak between the two sides of the heart, which are supposed to be separated into blood with oxygen and blood without
“In those uncertain moments,” she reflects, “we were completely in the dark about heart conditions, grappling with fear and uncertainty.”
“I feared I might lose my precious baby right then and there.”
Ventricular septal defect (VSD) arises when the barrier between the heart’s lower chambers, the ventricles, is breached.
This anomaly leads to a troubling scenario in which blood seeps between the heart’s segregated domains, mixing oxygen-rich and oxygen-poor bloodstreams.
The NHS reports that this is the most prevalent heart condition in newborns, impacting roughly one in every 500 births.
In numerous instances, minor openings tend to close over time, posing no concern unless they induce symptoms or strain the heart.
Yet, when the breach is substantial, blood flow between chambers can lead to lasting harm to the heart and lungs, increasing the risk of infections.
Hence, surgical intervention becomes necessary to mend the breach and protect the child’s health.
Finding Community and Support Through Heart Heroes
After learning about Bertie’s condition, the couple contacted Heart Heroes, a charitable organization that supports children with heart conditions.
Ms. Bryan recounted, “I noticed a poster for Heart Heroes while at the hospital, and we decided to attend one of their sessions when Bertie was about three weeks old.”
“At the group,” she continued, “we connected with other parents and met children who had undergone similar experiences and even worse.”
“Witnessing how these children were thriving despite their challenges was incredibly reassuring, and we gleaned valuable advice from fellow parents.”
“When we initially received the diagnosis,” she reflected, “we felt utterly isolated. With no prior knowledge of heart conditions, we were gripped by fear, fearing of losing our son.”
Advocacy and Fundraising Efforts
Following Bertie’s diagnosis, the couple sought out the help of Heart Heroes, a charity supporting children diagnosed with heart conditions.
The couple have now called on additional testing for heart conditions during pregnancy and begun fundraising for Heart Heroes through challenges including a burpees competition and half marathon, raising more than £3,000 to date.
“Receiving that support is what keeps us going. I’m also driven to assist others who may find themselves in our shoes down the road.”
The couple has taken proactive steps by advocating for expanded testing for heart conditions during pregnancy and launching fundraising efforts for Heart Heroes. Through challenges like a burpee’s competition and a half marathon, they’ve raised over £3,000 to date.
Congenital heart disease may be initially flagged during routine prenatal ultrasounds. However, an accurate diagnosis typically requires specialized testing such as fetal echocardiography. This is especially crucial in cases with a family history of congenital heart disease or heightened risk factors.
Ms Bryan said: ‘I think heart conditions should be discussed more during pregnancy. ‘Often, these heart conditions can be picked up while they’re in the womb, but we didn’t find out until he was six days old. ‘There are petitions out there for scans to be given out across the country because right now they’re not, and that’s how things get missed.’
However, according to the NHS, fetal echocardiography isn’t always feasible for detecting heart defects, especially milder ones.
She said, “I strongly believe discussing heart conditions should be more prominent during pregnancy. Often, these issues can be identified during prenatal scans, but in our case, we didn’t receive a diagnosis until Bertie was six days old.”
“There are ongoing petitions advocating for widespread availability of scans across the country because currently, they aren’t universally accessible, leading to potential oversights,” she added.
“I aim to offer the same level of support I’ve received. The funds raised will enable Heart Heroes to continue their vital support services,” she emphasized.
Kelly Cornish, the founder of Heart Heroes, commented, “Established in 2018, Heart Heroes has been dedicated to aiding children with lifelong heart conditions and their families, just like Bertie’s. We’re overjoyed to witness Amy and Rachel embarking on this remarkable challenge for our organization.”
“It’s truly heartening to witness families as Bertie’s enveloped in the warmth and support of our community, friends, and loved ones,” Cornish concluded.
References
Couple took their six-day-old newborn to A&E for cold sore… and doctors discovered a life-threatening hole in his heart: ‘We thought we were going to lose him’ [Internet]. Accessed on June 07, 2024. Available at: https://www.dailymail.co.uk/health/article-13479789/Couple-took-six-day-old-newborn-E-cold-sore-doctors-discovered-life-threatening-hole-heart-thought-going-lose-him.html
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