Leah Berenson
Leah Berenson
November 29, 2022 ·  5 min read

Baby Given One Day to Live Reaches First Birthday

A baby born in the UK was born with the odds stacked against him. Doctors told his mom that he had a life expectancy of only one day. A year later his family celebrated his first birthday as the baby boy is still going strong. Mom, Marie Claire, said Hector spent most of his first year, 259 nights, in the hospital.

He was born prematurely at only 23 weeks. As a result, he faced a number of health issues including sleep apnea, lung disease, and a condition known as hydrocephalus. The condition is caused by a bleed on his brain, referred to as a hemorrhage. Because of this, the spinal fluid is unable to move effectively through his body. 

What is Hydrocephalus

Hydrocephalus is an unusual buildup of fluid in cavities deep within the brain. The excess of fluid causes the ventricles to widen and puts added pressure on the brain’s tissues. There are 2 major types of Hydrocephalus, and a 3rd type that is considered a “Hydrocephalus look alike”. Some of these cases are from abnormalities of the brain and spine that occur in the womb.

Baby Hector likely has what’s known as Normal Pressure Hydrocephalus (NPH), the result of a brain hemorrhage. Although some people develop NPH with no existing factors, causes can be complications from birth or during surgery, a head trauma or brain infection, and possibly a tumor. The most common cases occur during infancy and the elder stages of life. NPH affects the body in various ways including, difficulty with breathing, balance, decision-making, and bladder control. 

Hydrocephalus isn’t the only condition that Hector is battling. Marie stated, “he has extra complications due to his prematurity. He has also been very unlucky as the shunt inside his head keeps blocking.”

Born at a Strange Time

Because Hector was born post-Covid, on November 12th, 2021, and new procedures were put in place to eliminate the spread of possible infection. Hector was kept in isolation until testing negative. Sadly, the first 40 hours of his life, Hector’s parents were unable to hold, visit, or touch their precious new baby boy.  Marie told BBC Scotland, “I saw him when he was born and gave him a kiss and then he was wrapped in plastic to keep him warm and rushed to the resuscitation department,” She continued, “I was heartbroken that we couldn’t be with him in those crucial early moments.”

Moving Beyond Hydrocephalus

Later, at just 42 days old, he was finally taken off the ventilators. His Hydrocephalus had become manageable, and doctors were confident that he would live. “When I heard, I let out a wail that came from the bottom of my soul, I can’t articulate it, it was the greatest feeling in the world,” Marie said of those terrifying, but ultimately gratifying moments. “There was still a long way to go but to know the team thought he was going to survive was so great.” In 2022, more than 5 months after his birth, Hector was discharged. He would finally be allowed to go home to be with his mom and dad.

Despite this newfound freedom he still frequently came back to the Royal Hospital for Children and Young People. Marie and her husband Angus keep a close eye on him because he has had 15 operations and has been rushed to the Emergency room 25 times since coming home. 

Keeping Spirits Bright

Marie had a lot to say about her son’s sweet spirit. “I feel (like) the luckiest person, he’s so fun, he brings so much joy to so many people. I’m so proud of him. He is a miracle; he is beyond a miracle, and I am so proud of him.”

She attributes his survival, to the love and support he’s gotten from loved ones. She said, “It is because of everyone’s positive prayers that he has been pulled through and we have made sure to surround him with all the love and joy and hope so that he feels absolutely adored. We make sure every day is great for him,“. She also expressed feeling gratitude for the support from hospital staff, “Everybody at the hospital is behind Hector, the nurses, domestics, clerks, doctors, physios, it’s like one big family. Some days have been so difficult. He’s had drains coming out of his head and I’ve not been allowed to lift him but the care he has had at the hospital has been incredible.”

Previous Heartbreak

Sadly, this isn’t the first pregnancy the couple has had, they lost a baby 3 years ago. Although the family never could have predicted Hydrocephalus, they did know there would be some complications. Marie Claire explained the pregnancy was high risk stating, “When I went to hospital with sharp pains doctors told me I was in labour. I said ‘no’ and tried to hide the labour pains from them as I desperately didn’t want him to arrive early. Doctors said there was a very slim chance of survival under 23 weeks. I looked at my watch and it was one minute to midnight and so I said in one minute I will have reached 23 weeks.

 No One Knows What the Future Holds

It is not yet known how the Hydrocephalus, or his other conditions will impact his health and body in the future. Marie Clare said: “He was born at 01:14 so we stood at his cot at that exact time one year later and had a quiet moment just so grateful he is here. We reflected on how he had made it and how we were the luckiest people. It’s been the best year of my life’.

Hector’s parents have gone through a trying time to be supportive of their son.  Despite his many conditions, including Hydrocephalus, Hector has pulled through and has been an inspiration to many hospital personnel and community members!

Sources

  1. Baby given one day to live reaches First birthday.” BBC. Angie Brown. November 23, 2022.
  2. Hydrocephalus fact sheet.” National Institute of Neurological Disorders and Stroke. Retrieved November 23, 2022.