Introduction: The Unexpected Diagnosis
Skye’s journey began as most new parents’ do: with the excitement of bringing a new baby into the world. Clara and Susie were overjoyed to welcome their firstborn, Skye, in
July 2020. Their pregnancy had been uncomplicated, and there were no concerns during the numerous growth scans. The anticipation was filled with excitement as they awaited the arrival of their little girl.
However, what they didn’t know was that Skye’s life would take a drastic turn. Despite the excitement of bringing their daughter home, there was an underlying sense of worry that would slowly begin to unravel.
The Early Signs: Struggling with Feeding and Weight Gain
From the outset, Skye’s first few months at home were anything but easy. She was an unhappy baby, described by her mothers as “fussy” and unsettled. Clara and Susie were told that Skye likely had
colic, a common condition in newborns, and they were assured that it would pass with time. However, things didn’t seem to improve. Skye was very small and had difficulty gaining weight, something that seemed like a minor issue at the time, but the reality would soon hit them.
Skye struggled with breastfeeding, lasting only about ten minutes before falling asleep. She also began sweating profusely, even during feeding and sleeping. Other signs followed: projectile vomiting, difficulty sleeping, and delayed jaundice. As first-time parents, it was difficult to distinguish between normal baby behavior and signs of something more serious. The pandemic had made it harder to get the necessary help, and Skye’s symptoms, though concerning, were dismissed by professionals as common ailments. But Clara and Susie’s instincts told them something was wrong.
As time passed, they noticed that Skye’s heart rate and breathing were unusually fast, particularly when feeding. A cold made it worse, and Skye became incredibly wheezy. Despite a misdiagnosis of asthma and multiple visits to the doctor, Clara and Susie were not satisfied with the answers they were receiving. Something wasn’t right, and they continued to press for answers.
The Long Road to Diagnosis: 19 Months of Uncertainty
After 19 months of taking their concerns to various doctors, Clara and Susie finally had their worst fears confirmed. Skye had a
heart murmur, which had been overlooked until a paediatrician finally took their worries seriously. The murmur was loud and unmistakable. Skye was admitted immediately for further tests, and what followed was a series of heart-stopping moments that no parent should ever have to endure.
Skye was rushed to a specialist hospital, where multiple tests confirmed that she had a ventricular septal defect (VSD), mitral valve regurgitation, an enlarged heart, possible cardiomyopathy, and
failure to thrive. The holes in her heart were allowing blood to flow incorrectly, flooding her lungs with excess blood. Her lungs had become severely damaged as a result, and the doctors feared irreversible harm. Skye’s condition had been going unnoticed for months, and now it was critical that she receive immediate care.
The shock and grief were overwhelming for Clara and Susie. They couldn’t comprehend how Skye had been allowed to go on for so long without the necessary medical intervention. Skye’s body had been fighting for survival every day, and the doctors were astonished she had made it as far as she had. However, Skye’s resilience was about to shine through.
Life-Saving Surgery: A Battle for Survival
Skye’s treatment journey began immediately, but it was far from smooth. She underwent multiple diagnostic tests and procedures, all under general anesthesia. She spent two weeks in the hospital, where she remained oblivious to the gravity of the situation. But for Clara and Susie, every moment was a battle. Their little girl had been subjected to so much trauma, and they were desperately trying to understand the full scope of her heart condition.
After being stabilized, Skye underwent a palliative procedure called a pulmonary artery banding. This surgery was necessary to relieve pressure on her lungs and give her heart a chance to recover. However, despite the surgery’s simplicity, Skye’s condition made recovery difficult. Her heart had to adapt to a new way of functioning.
Skye’s recovery was a tumultuous one. Just one day after the surgery, she suffered a cardiac arrest. For 29 minutes, Clara and Susie watched in horror as doctors and nurses desperately tried to save their baby. This terrifying moment was something that would haunt them for the rest of their lives. The doctors worked tirelessly, and fortunately, Skye’s heart started beating again just in time to prevent further damage.
Skye was placed into a medically-induced coma for almost a week, with neuroprotection to safeguard her brain from the effects of the lack of oxygen during the cardiac arrest. The emotional toll on Clara and Susie was unimaginable. They sat by her bedside day and night, praying for her recovery.
When Skye finally began to wake, she used sign language to communicate with her mothers. They were overjoyed to see their daughter responding, and it was a sign that she was still fighting to come back to them.
The Road to Recovery: A New Beginning
After several weeks of recovery in the paediatric intensive care unit (PICU), Skye was eventually transferred to the cardiac ward. The road ahead was still uncertain, but for the first time in weeks, Clara and Susie felt like they could breathe again. Skye had survived her ordeal, and they were ready to take their daughter home.
The transition from hospital life to home life was difficult, but seeing Skye gain strength each day was a constant reminder of her fighting spirit. Her mothers were amazed by her progress. For the first time, they saw their daughter thrive—sweating no longer seemed to be a concern, and she was able to breathe and feed without struggle.
Skye’s recovery continued to surprise her family. Within six months of surgery, Skye was a different child. She had gone from a quiet, shy, and physically delayed baby to a bubbly, confident little girl who was eager to explore the world around her. She began walking and showing an interest in activities she had never engaged with before.
Looking Ahead: The Ongoing Journey
Skye continues to make remarkable progress, but her journey is far from over. While she is now a happy, thriving toddler, she still has ongoing medical needs. She is currently under investigation for a potential genetic disorder that links her heart condition with her motor delays and hypermobility. This investigation is ongoing, and it could take years for the full picture to emerge.
Skye’s heart condition, though stabilizing, will likely require further surgeries as she grows. Her doctors and family are closely monitoring her health to ensure she continues to thrive.
Raising Awareness: The Importance of Early Detection
Reflecting on Skye’s story, Clara and Susie are both grateful and heartbroken. Grateful that their daughter survived, but heartbroken that her condition went undiagnosed for so long. They are passionate advocates for early detection of congenital heart defects. If Skye’s condition had been diagnosed earlier, the damage to her lungs could have been minimized, and her treatment would have been less complicated.
“If we had known earlier, her journey would have been different,” says Clara. “Skye should have had surgery when she was a few weeks old, not 20 months. Her lungs wouldn’t have been damaged, and she wouldn’t have had to face the traumatic events she did.”
As parents, Clara and Susie now work tirelessly to raise awareness for early detection and to ensure that other children like Skye don’t have to face the same struggles. They want to ensure that parents and healthcare professionals are equipped with the knowledge to recognize the signs of heart defects in newborns.
Conclusion: Skye’s Strength and Resilience
Skye’s journey is a testament to the strength and resilience of children born with congenital heart defects. Despite the challenges she faced, she has shown an incredible ability to fight for her life. Her story is one of hope, courage, and the unyielding love of her parents.
Skye may have started her life in a hospital bed, fighting for survival, but she is now a strong, joyful little girl who continues to surprise everyone with her progress. Clara and Susie remain optimistic about her future and are focused on giving her the best possible life.
For parents who may be facing similar challenges, Clara and Susie’s story offers a glimmer of hope. No matter how difficult the journey, there is always light at the end of the tunnel.