Hypoplastic left heart syndrome (HLHS) is a congenital heart condition which affects four out of every 10,000 births in the UK alone. Born on September  1, 2015 in Newcastle, 10-months old Lennox has suffered five cardiac arrest episodes due to the condition ever since.

HLHS occurs when the heart development of a child during fetal stage is disrupted, leading to under-developed left side structures of heart.  The occurrence of this condition takes places during the first eight weeks of the pregnancy while the degree of the condition varies from one case to another with the underlying causes also not being well-documented.

HLHS, occurring 55-70% more in males than females, can sometimes be linked to genetic causes or high-risk environmental exposures in familial cases of the condition, however other reasons for the conditions remain unknown. In this condition, the functions of the left ventricle, aorta, mitral and aortic valves are compromised, making it difficult for the heart to efficiently pump blood around the body.

The left ventricle which is responsible to pump oxygenated blood along the body is poorly developed and small in size in HLHS, resulting in reduced blood flow which often leads to episodes of cardiac arrests as seen in Lennox’s case. Additionally, the aorta which takes oxygenated blood from the left ventricle to the body is also very small, further affecting blood pressure. Moreover, the size of mitral valve between the left atrium and left ventricle and the aortic valve between left ventricle and aorta is also reduced in the condition.

When a child is born with HLHS, symptoms begin to show themselves a few days after birth. The characteristic signs are a pounding heart, difficulty in breathing, weak pulse and a bluish skin color.

While HLHS is accompanied by many complications, it does not go unobserved during prenatal testing. During an echocardiogram, the internal structures of the heart are visualized while in an electrocardiogram, electrical changes during a heartbeat are recorded to detect any abnormalities. Similarly, chest X-rays can help check the size of the heart as it develops in the womb, while blood flow is measured in a Doppler ultrasound.

As these tests are collectively administered, doctors are often able to inform parents-to-be about the potential condition their baby might carry. The case of Laura, 21-year old mother of Lennox was no different. During Laura’s 20 week routinely scans, her doctor told her about her boy’s heart abnormalities.

She said, “We were so excited at having another boy, we didn’t notice the amount of time the specialist spent looking at his heart.” She added that after being a mother to two healthy boys, the news of a third boy with a congenital defect was shattering. Lennox’s condition in the womb became so fragile at a point that Laura and her partner were offered the option of abortion. But the couple decided against what seemed rational at the time. Laura said she knew she wouldn’t be able to fix her child’s heart defect but she was certain that she would be there for her child through thick and thin.

Although Lennox’s parents were mentally prepared for caring for a baby with a severe defect, the last 10 months have not been easy for Lennox. Two hours after being born, Lennox was taken to the children’s specialist unit at the Freeman Hospital when he was put on life support. Three days later, the child  had to undergo a major heart surgery, after which Lennox experienced his first cardiac arrest on the 12th day after his birth.

After experiencing four more cardiac arrests in following months, Lennox has become a rare case of resilience. Named after the boxing icon, Lennox Lewis, Laura feels her brave boy has been aptly named. After conquering every battle, the little fighter is now smiling at his triumph, lighting up his parents’ world. His parents are hopeful their child will fight his condition and lead a healthy life with his family.

Lennox’s survival is no less than a miracle not just for him but for any other child with HLHS. The achievement is even more astounding given the magnitude of the three surgeries Lennox had to go through – a Norwood procedure, a Bi-directional Glenn operation and a Fontan operation.