A baby who was born with a large ‘bubble’ on his forehead from a rare birth defect has gone on to defy expectations – with his mother branding him a “true miracle”.
Hannah Sachs’ pregnancy was smooth sailing until her 22-week scan flagged an abnormality – the tot had a suspected encephalocele, a defect which occurs when part of the brain protrudes through a gap in the skull.
The 32-year-old was terrified she’d lose her child, but she remained under close monitoring for the rest of her pregnancy, before welcoming baby Liam.
Arriving two weeks before his due date, the baby was born with a large sac of fluid – resembling a bubble, and which the family nicknamed his ‘squishy’ – on his forehead, and was immediately taken to the NICU.
“Seeing him for the first time was a moment I’ll hold on to forever – he was beautiful, and his mere presence was a blessing,” Hannah, a research coordinator based in Cincinnati, Ohio, told Need To Know.
When Hannah and her partner Gabriel, were given the news that Liam was likely to be born with an encephalocele, they were terrified of what the future may hold.
Hannah said, “It was a complete rollercoaster of emotions.
“All I cared about was his ability to live outside of the womb – everything else we would figure out and handle.”
Luckily, little Liam was born with no complications in March 2023.
After 13 days in the NICU, he was discharged to go home, but needed to continue using oxygen as his levels would often drop throughout the day.
But just two weeks after arriving home, he developed severe hydrocephalus – a build-up of excess cerebrospinal fluid in the brain that can lead to brain damage, or prove fatal – and needed an emergency shunt placed to drain it.
Hannah said, “He was one month old and having his first brain surgery.
“It was tough to see him go through it.
“He was always proving to be so strong, at such a young age.”
The surgery was a success, but doctors advised he would need a larger surgery when he was six months old to remove the encephalocele and undergo a full skull reconstruction.
In September 2023, the tiny tot underwent the 11-hour surgery.
Hannah explained: “Because of where the encephalocele was formed, it caused a lot of his skull to be deformed, so they were able to correct a lot of that during this surgery as well.”
He spent 11 days recovering, with his eyes swollen shut for the first week.
Hannah said, “Every single thing scared him because he couldn’t see.
“Nurses and doctors were touching him to get vitals or check the incision, and it would scare him.
“We would be constantly talking to him to try and walk him through what was happening.
“Although he didn’t understand the words we were saying, I found comfort in him knowing our voices, and it seemed to help him a lot.”
But while the surgery had gone well, Liam was vomiting and irritable, leading to further concerns.
A physical therapist soon found that he wasn’t as active or mobile as a typical child of that age would be, and at 10 months old, he was diagnosed with cerebral palsy (CP) – a problem caused by the brain that leads to movement and coordination issues.
Hannah said, “It wasn’t a surprising diagnosis, but it’s sometimes hard for us to fully grasp because it’s a lifelong disability.
“He will have CP for the rest of his life, as well as a shunt for hydrocephalus.
“But despite it all, Liam is doing really great.
“He has been in a lot of therapies – occupational, speech, feeding, aquatic and music – and has really developed and learned a lot.
“He’s walking – almost running at times – and is saying a handful of words, including ‘mama’ and ‘dada’.
“I love hearing his voice.
“Sometimes he babbles and is trying to have conversations, which is great, even if we can’t always understand what he is trying to say.
“Everyone is very optimistic that he will speak one day.
“He is so strong and resilient.
“Despite his limitations, he is adventurous and loves to push limits – he’ll go down slides headfirst and loves to be outside.
“Everything that he has overcome so far in his life is a part of his story.
“He proves people wrong daily.
“There was a point where we didn’t know if he would eat food by mouth because he was being fed through a feeding pump, but now he only eats food by his mouth.
“He hasn’t hit other milestones on time, such as walking, and didn’t start walking unassisted until he was two.
“Even though it took him longer to achieve, he is doing it.
“We celebrate every single win he has.”
While Hannah never pictured herself as the parent of a child with special needs, she says she “wouldn’t change Liam for the world”.
The doting mum added: “This life is hard but so beautiful.
“Seeing your child be intubated and every medical procedure has been traumatic, but we all have come out on the other side.
“I wish he didn’t have to have so many surgeries or go to as many therapies because those things are hard and those are things the majority of people don’t have to go through – but he is so resilient, determined, strong and brave because he has been through all of that.
“He is imperfectly perfect in every way.
“This life is very different from what I thought it would be, but it is more beautiful and rewarding than I ever thought possible.
“Liam is doing things on his timeline and in his own way.
“He is truly a miracle.”
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