FOR the first few months of her pregnancy, everything was smooth sailing for Hannah Sachs.

But everything changed when her 22-week scan flagged an abnormality. Her unborn son had a suspected encephalocele – 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 and welcomed little Liam into the world in March 2023 with no complications.

Hannah, a research coordinator based in Cincinnati, Ohio, United States, tells Sun Health: “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.”

But he didn’t look like the other babies in the hospital.

Liam was born with a large sac of fluid – resembling a bubble, which the family nicknamed his “squishy” – on his forehead, and was immediately taken to the NICU.

“It was a complete roller coaster of emotions,” Hannah, who lives with her partner Gabriel, says.

“All I cared about was his ability to live outside of the womb – everything else we would figure out and handle.”

After 13 days, he was discharged to go home, but needed oxygen as his levels would often drop throughout the day.

Liam appeared to be recovering. However, two weeks later, he developed severe hydrocephalus – a build-up of excess cerebrospinal fluid in the brain.

It can lead to brain damage and sometimes be fatal, and the tot needed an emergency shunt to drain it.

“He was one month old and having his first brain surgery,” Hannah says. “It was tough to see him go through it.

“He was already proving to be so strong at such a young age.”

The surgery was a success, but doctors advised he would need a larger operation when he was six months old to remove the encephalocele, and undergo a full skull reconstruction.

The tiny tot underwent the 11-hour procedure in September 2023.

Hannah says: “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.”

Liam spent 11 days recovering, with his eyes swollen shut for the first week.

“Every single thing scared him because he couldn’t see,” Hannah adds.

“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 to 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.”

While the surgery went 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, and at 10 months he was diagnosed with cerebral palsy (CP) – a lifelong condition that affects movement and coordination.

Hannah says: “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.”

At one stage, the family weren’t sure if Liam would ever stop being fed through a tube.

But the youngster now enjoys his meals exclusively by mouth.

“He hasn’t hit other milestones on time, such as walking, and didn’t start walking unassisted until he was two,” Hannah adds.

“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 additional needs, she says she “wouldn’t change Liam for the world”.

The doting mum adds: “This life is hard but so beautiful.

“Seeing your child be intubated and have 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, 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.”