They had given him a day to live, now he celebrates his first birthday. The case of little Hector, born with hydrocephalus

If you don’t believe in miracles, don’t read this article. Because this is what it is, given that at the birth of little Hector, which took place very far in advance of the presumed date of birth, the doctors had no hope of his survival.

Hector came into the world at Royal Hospital for Children and Young People of Edinburgh, after only 23 weeks of gestation and his parents had been told that he would not live more than 24 hours. Yet this little hero defied what seemed like a sealed destiny, so much so that he survived and now celebrates his first birthday. “A miracle child”, as defined by mother Marie Claire, 41, managing director of a charity, who has just gone through 12 months that were anything but easy, as she told in an interview with BBC.
Hector was born with hydrocephalus, literally “water in the brain”, a condition that involves an increase in the volume of the cerebral ventricles as a result of the reduction in brain mass or excessive liquor production, or the cerebrospinal fluid. This liquid is an indispensable element – in the right quantity – for the correct functioning of the brain, as it protects it by allowing it to “float” and transport nutrients. However, an excessive amount causes thehydrocephalus.

A more unique than rare case

His case is unique because it is determined by extra complications due to prematurity: he also has chronic lung disease, retinopathy, requires a feeding tube and suffers from monitored sleep apnea.
Hector was born on November 12, 2021, when restrictions due to Covid forced him to be in solitary confinement until he tested negative for the virus. Mother Marie Clare and father Angus, a music teacher, were unable to visit him for the first 40 hours after his birth: while he was fighting for life inside an incubator, his parents could only see him through the photos that the health personnel sent them along with health status updates.

“I saw him when he was born and I gave him a kiss. Then they wrapped him in a blanket to keep him warm and took him to the intensive care unit,” says Marie Clare. “I felt devastated, heartbroken that we couldn’t be by his side in those first crucial moments.” Only after about two days were his parents able to make short visits to see him and only after five were they allowed to be with him day and night.

42 days after the birth, doctors took him off the ventilator and told the couple their baby would live. “When I heard it, I let out a moan that came from the depths of my soul, I can’t articulate it, it was the greatest feeling in the world,” said Marie Clare. “There was still a long way to go, but knowing from the doctors that he would survive was fantastic.”
Only in April 2022 were Marie Clare and Angus able to take little Hector home, five months after his birth. Despite this he is still a regular patient of the hospital, he has had 15 operations and has been admitted to the emergency room 25 times.

What it means to be born with hydrocephalus

The damage caused to the brain by hydrocephalus can involve a wide range of symptoms, including: headache, general malaise, blurred vision and difficulty walking. Despite the criticisms, Marie Clare said she feels like a very lucky person, because Hector brings so much joy to so many people. “It’s a miracle, but beyond that, I’m also very proud of him.” Advances in medicine make it possible to save babies born as early as 22 weeks of gestation, but statistics show that only four out of 10 born at 23 weeks survive.

Hector’s parents had already lost a baby in their pregnancy three years earlier, and Hector’s pregnancy too had therefore been a high-risk pregnancy. “When I went to the hospital because of severe pain, the doctor told me I was in labor. I thought: “no, it’s not possible” and I tried desperately to hold back the labor pains because I didn’t want him to be born before the deadline», says Marie. “They told me there was a minimal chance of survival under 23 weeks. I looked at the clock, it was one minute to midnight, so I said: “in a minute it will be 23 weeks”». Hector was born an hour and 14 minutes later.

Marie Clare and Angus now devote most of their time to their son because they don’t know how his health conditions will affect his life in the future. A few days ago they celebrated his first birthday: «He was born at 01:14 and so, a year later, my father and I stopped in front of his cot at that exact time, thinking how grateful we were for his presence », said mother Marie Clare. “We reflected on how he made it and how lucky we are. It was the best year of my life.”

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