Baby Born With 2% of His Brain Survives – The Boy With No Brain

Before he was even born, doctors predicted Noah would be severely brain damaged and was unlikely to survive. But somehow Noah defied all the odds, and his family have worked tirelessly on developing Noah’s brain.

Then something even more baffling was to happen.

Noah’s brain had grown, which it’s not supposed to do.

Noah was defying medical understanding.

Leading specialists to question how our brains really work after all.

Every year, thousands of babies are born in the UK with life-threatening conditions. It’s every parent’s worst nightmare. When Shelley and Rob Wall found out they were having a baby 4 years ago in Cumbria, little did they realize that nightmare was about to happen to them.

As the pregnancy progressed, Shel and Rob went for what they thought was a routine scan.

“Shelley, like every mother, expectant mother, had a scan at around about 20 weeks, which is called the anomaly scan. You’re looking to find out if there’s anything wrong with the baby. And obviously, for the vast majority of women, there’s nothing wrong with the baby. And the anomaly scan is actually very nice because it’s the first time you get to see your baby’s face properly and, you know, count fingers and stuff. But for Shel, obviously, it wasn’t good news.”

As the images of the baby started to come through, the radiographer found something that alarmed her.

“She went very quiet, which obviously alerted us there was something maybe not quite so right.”

“It was just like someone had just switched her off completely. She just didn’t speak and the room just went silent. The first thing you ask is, is there a heartbeat? That’s the first thing I asked was that question, and she said yes. Thank goodness, you know, there’s a heartbeat. But she said I need to speak to somebody.”

It was devastating news. The son they had already decided to name Noah had spina bifida. It’s a condition where the spine doesn’t develop normally and a cyst or hole forms on the baby’s back. It can mean paralysis and brain damage.

“I’ve got no idea what was going to happen, whether I would end up going in hospital like there and then because he looked okay to me. You know, he was kicking. I could feel him.”

And worse news was to come. Noah had a serious complication of spina bifida called hydrocephalus. His skull was filling up with fluid and his head was swelling to highly dangerous levels.

“We had this news. We were just in shock. I think, um, also possibly in denial.”

Shel and Rob were moved to the care of consultant neurosurgeon Dr. Claire Nicholson in Newcastle, a specialist in brain-damaged children.

“Well, Noah had very severe hydrocephalus. His head was very big. The fluid cannot escape from the brain at the same rate at which it’s being made. So, it builds up.”

“And Noah’s head just got bigger and bigger and bigger and bigger and bigger.”

And as Noah’s head filled with more and more fluid, the tiny amount of brain matter was getting smaller and smaller. It looked like he would be born without a brain.

“Talking about a very, very significant reduction in brain volume.”

Rob and Shel’s baby was alive, but scans showed his brain was vanishing.

“Every time we sort of got a bit of different news, bad news, it was like being hit with a baseball bat. It was just we were stunned. You know, this is our child’s brain. It was horrendous. It was, how much does this little boy have to go through?”

All of Rob and Shel’s plans for their unborn baby fell apart.

“Like your whole world just collapsed. It was devastating.”

Rob would come home then both look at each other and just cry. The couple were told that if Noah made it through, he would have severe mental and physical disabilities. But ultimately, there was so little brain that their child was unlikely to live for very long after he was born.

“We had warned Shelley and Rob that there was a chance that he would not survive, and the reason for that is that a very severely brain-damaged child may not be able to breathe. The part of their brain that controls breathing may not function. A severe hydrocephalus carries a high mortality rate, over 50%.”

“We were offered terminations five times. It was never an option for us. To me, we wanted to give Noah that chance of life. If he was born and didn’t survive, then at least we’ve given that chance. Then nature would have taken over.”

Hoping for the best and preparing for the worst, Shel and Rob started to make plans for their unborn baby’s funeral.

“I’d never seen a baby’s coffin before. I just felt as if I was in a bubble. People were talking, but it was just, um, couldn’t really hear what was going on. It’s horrible.”

“The odds were stacked against him very much.”

As doctors prepared for the birth of Shelley and Rob Wall’s son, Noah, in 2012, no one was expecting the baby to survive. During the pregnancy, Noah’s skull had been steadily filling with fluid. And as the fluid kept building up, what little brain remained was disappearing. Doctors needed to act fast.

“We were told his head had grown dangerously large.”

“And they said, ‘We’ve, we have to get him out.’ And at that point, I didn’t know how much brain he had.”

Doctors got ready to give Shel an immediate cesarean.

“They didn’t know if they were going to cut right the way up to basically get him out.”

“And I said, ‘Well, that doesn’t matter. Just however you need to cut to get him out really carefully.'”

Noah was especially fragile because as well as having very little brain, his spina bifida meant he had an open wound running down his back.

“I couldn’t wait for him to be born. But then it’s like I’m scared because I don’t know if I’m gonna get five minutes with him or an hour with him or will I have a month with Noah. Didn’t know.”

Doctors knew that without a brain there was no way the baby could survive outside the womb. Everyone was waiting to see if Noah could even take his first breath on his own.

“They started the procedure and all we heard was, uh, a scream from Noah. To us it was a miracle that he was breathing.”

“And I just heard Noah screech. I couldn’t, I thought he’s here.”

“We looked at each other. We cried. We’ve been waiting so long to meet. All his skin was all really pulled really tight. He had lots of like lumps and bumps where the fluid had come out through sort of the cracks of the skull. But he was just adorable.”

It was totally baffling to doctors how the baby was breathing for himself. But they had more pressing things to worry about. Noah needed immediate surgery to have the hole in his back caused by the spina bifida stitched up.

“The skin on the back is not closed properly. The nervous system is not covered and you have to do an operation as early as you can in the baby’s life, ideally on the first day or so to close that defect.”

“When Noah went down for his operation, we just gave him a kiss, uh, and said we’d see him when he came back.”

Crucially, Dr. Nicholson also needed to protect what remained of Noah’s brain. She immediately decided that his only chance of continued life would be a shunt, a drain that is inserted into the brain to siphon off the fluid.

“It’s like a little, um, hole in the actual skull and it’s a little valve and the tube is attached. Um, you can actually see it on his skin. It goes down here and into his abdomen. So the fluid we see comes out naturally.”

So Noah was whisked off to theater for a second time.

“It’s drilling into the brain cavity. So we were well aware of that possibility of something going wrong.”

“And the reason we do that is that if we don’t, the child may die or be left even more severely disabled than they are.”

Noah made it through both operations and doctors were able to take the first scan of his head outside the womb. The results were incredible. There was just 2% of Noah’s brain left.

“Basically, he had an extremely little amount of brain. The rest of the head was just full of fluid.”

“Noah’s scan is on the left and the dark area is where his brain should be. The image on the right shows how his brain should have looked.”

“It’s an unhappy brain, um, because it’s a brain that’s been under pressure.”

How Noah was alive was a medical mystery.

“I suppose I looked at Noah and I thought he’s got a lot of problems ahead of him. The common outcome for a child is that they are very, very profoundly disabled and that their chances of survival even of the first year of life are very small.”

Despite having everything stacked against him, Noah is now 3 years old.

“Ready? It’s ready.”

And from birth has astounded doctors and his family with what he can do despite being born apparently with no brain.

“Stop.”

“What a clever boy.”

“Mommy, I’ll get you a drink.”

“Get the water.”

“I know. It’s got water in it, darling.”

“Your mouth again. That’s it.”

“Oh, wow.”

“So, what a good laugh.”

“How can Noah or how can a child be so apparently normal with this amount of brain?”

Noah is paralyzed from the chest down because of his spina bifida, but his development has left everyone stunned.

“Did that make you jump? Go on. Hop.”

“Do you know which is your left and your right, Noah? Which is your right hand?”

“This one.”

“Good boy. Which is your left hand?”

“This one. Good boy.”

Even his neurosurgeon, Dr. Claire Nicholson, was taken aback by what Noah could do.

“The computer skills was one of the main ones. I remember thinking that he could use an iPad better than I could.”

“I don’t believe it.”

“I don’t believe it either.”

“We used to go ‘la’ and he would come back, repeat that to us. Uh, so just that communication there was absolutely incredible.”

“The first time he started to say things, because learning your first words at around about a year is a very powerful marker of development, and I would not have expected that to happen.”

“We were told certain parts of the brain do certain things. This part makes his speech. This part is this. So we, in some ways, we didn’t expect him to be able to do certain things and he was doing them.”

“I’m singing.”

“Good boy. Well done.”

Regardless of what the doctors predicted, as soon as Noah was born, Shelley and Rob made a decision. They would do whatever it took to help Noah’s brain develop.

“On there for mommy, please. That’s it.”

“Everything from when he opens his eyes, he’s all about training and brain training. You know, it’s taken us years just to train him to have a bite of a sandwich. You know, the process of actually putting it to his mouth, taking that bite. And I wanted to make sure, you know, with having such little brain, um, that he was making, um, use of the best of what he got.”

“He has so much input in terms of sensory stimulation. Um, just everything is about learning.”

It’s a family project. Even his sister Steph gets involved.

“Noah, are we going to do some more brain training? Stand up. One, two, three.”

“There’s always somebody with him doing things. He’s never sat doing nothing. He’s always playing games. He’s always counting when he’s eating his food. We’ve done so much with him from the very beginning.”

“One.”

“Where’s two gone? Where’s two in there? Count them.”

“Count them.”

“That’s really good. Good boy. Well done.”

And when the family began to see incredible results from their efforts, they made Noah’s brain training a 24/7 routine.

“Bye, Noah.”

“I mean, we don’t go out. Every day is just revolved around Noah and what he does, and then we just collapse.”

But their dedication was paying off. Noah’s progress was nothing short of miraculous.

“That’s perfect.”

“We asked the doctors how he was doing his normal day-to-day stuff and they couldn’t really give us any answers. They were astonished as well. Everyone was looking for answers.”

Noah’s scans were sent to Dr. Greg Scott, a neuroscience researcher at Imperial College London. He created a 3D model of Noah’s brain to see if he could shed more light on what was going on.

“I’ve not seen a brain with such severe hydrocephalus. I normally deal with adult patients after a head injury and sometimes you can get hydrocephalus following a head injury, but I’d never expect to see something with this extent of ventricular enlargement.”

Dr. Scott’s 3D scans confirmed the extraordinary degree to which Noah’s brain had been distorted by fluid when he was born.

“When we look at Noah’s scan, we can see that in spite of how abnormal it is, Noah was still able to eat and drink and breathe. And that’s probably because the brain stem, the part of the brain that controls those functions, was not so damaged and was able to function.”

“So that helps to explain why Noah could survive in his early life, but it doesn’t answer the puzzle of his advanced development.”

“The other parts of the brain that will be important later on in life that control functions like concentration and memory, that involves the cortex, and we can see here with Noah that’s been severely compressed. We can just see a thin rim of tissue around the outside of the brain towards the skull.”

The 3D model shows clearly the incredible pressure on these key areas of Noah’s brain.

“Noah’s case is fascinating because you would expect a brain so squashed like his to lead to a severe disability, but we can see that that’s not happened.”

“Amazing.”

“Yeah.”

“Can you see yourself?”

“Yeah, I can see.”

But Noah’s amazing intellectual progress was still unexplained.

“Look how he was doing the things he could do with such a small amount of brain. Um, I don’t think you’ll ever understand it.”

“Mommy kisses.”

With each of Noah’s extraordinary milestones, Shelley would email Dr. Nicholson and let her know.

“He’s a remarkable child of two remarkable parents. I think these two things are linked.”

Dr. Nicholson decided it was time to try and look inside Noah’s brain again.

“Noah was obviously doing fantastically well. He was doing so much better than anyone had ever thought. And Shel and I have been talking about this, you know, for about a year at this point. You know, what is happening and why is he so much better, and there was a lot of curiosity left. When I discovered the orthopedic surgeon was going to be putting him off to sleep for his foot anyway, I thought haha, I shall take this opportunity, um, and we did that at the same time as that operation.”

But nothing could prepare them for what was to come. Dr. Nicholson saw Noah’s brain scan at 3 years old and she immediately went to find his parents.

“One of the nurses said, ‘Miss Nicholson’s been, uh, looking for you.’ Uh, and we immediately thought, ‘All right, has something gone wrong?'”

“I just said, ‘I want you to come and look at this.’ Because I had the pictures on the screen, the sort of before and after if you like.”

“She said, ‘His brain has grown. Look.’ And we had one picture, the little bit on one side. We had this great big brain on the other.”

The impossible seemed to have happened. Noah’s brain had grown from the 2% that he was born with to nearly 80%.

“It was unbelievable. We were just beside ourselves. It was just such an emotional moment. I hadn’t expected it. And to see that it was just, it was basically it looked like a miracle to us. Shel burst into tears and I was nearly in tears and you know, there was just everyone was kind of just hugging each other really because it was just so extraordinary.”

“Going to play your silly face.”

Noah had baffled doctors once again. How this medical miracle could have happened is a mystery that Shel and Rob have been trying to solve ever since.

“I keep having to remind myself that he’s grown a brain. Um, you know, he’s grown a brain. It sounds incredible just to say that.”

“Yay.”

“Noah’s brain had grown, which it’s not supposed to do.”

“Are you ready? I can. I’m going to rinse it.”

Rob and Shel’s three-year-old son had perplexed everyone and was causing intense interest in the medical world.

“The human brain is a complex and mysterious organ. There’s a huge amount of the brain that we don’t know and understand fully.”

“Oh, you’re yawning. Are you tired? Are you ready for bed?”

“He has surprised us, you know, through his life so far. Um, he’s completely remarkable.”

3-year-old Noah has spina bifida and is paralyzed from the chest down. But it’s his brain that is a total mystery.

“Every time we see the doctors, they just shake their head. They’re just amazed at what he can do.”

“I’m going to get him. Come on.”

Against all odds, he survived being born with just 2% of his brain. And then he astounded doctors further when it appeared to grow back.

“See? Yeah. Wow.”

“It’s a bit funny. Does it look funny? Yeah.”

“Are you ready?”

Today, Shelley, Rob, Noah, and his sister Steph are leaving their home in Cumbria to go to London to meet neurological researcher Dr. Greg Scott in person. Dr. Scott of Imperial College London has been studying the effects of trauma on the brain for several years.

“Hi, Noah. Hi, Shelly. Come on in.”

He has never met anyone who has survived with a brain as small as Noah had when he was born.

“Nice to meet you. So, looking at the first MRI scan that Noah had, this is going slices through Noah’s head from top to bottom, you can see that there’s clearly lots more fluid there than there should be. And the pressure of that fluid will be pushing outwards on the brain tissue that you can see in gray and white around the outside.”

But Noah’s recent brain scan reveals an astonishing improvement.

“You can see here that there’s a lot more of the gray and light gray colors and that’s the normal brain tissue and far less of the dark fluid.”

Dr. Scott thinks there’s a key reason why Noah’s brain has changed so radically.

“Now, that would be the shunt relieving that pressure from the brain.”

It appears that the decision by Dr. Nicholson to put a shunt deep into Noah’s skull to drain away the fluid has made space for his brain to somehow expand and grow.

“There’s parts that have really grown in size.”

“Is that meant to happen?”

“I think the shunt has done a good job and that release of the pressure means that many parts of the brain have been able to sort of recover compared to that very early scan. There’s still more of the brain occupied by fluid than you might expect. Um, but there’s been a big improvement.”

“Do you think that fluid will reduce and the brain will get bigger?”

“I think it will continue to improve. Noah’s case makes you wonder how the brain can still seem to achieve so much in spite of such a severe injury.”

The original injury in Noah’s case came from the pressure of the fluid which would normally damage his brain beyond repair.

“Can you touch my finger? Can you go back and forth?”

But his brain expanding still doesn’t explain why he can do the things he can.

“Should we have a high 10?”

Noah is a continuing puzzle. With some of their questions answered, the family head back to Cumbria.

“I think he’s a complete miracle. Noah.”

At home, the family resume their round-the-clock care for their son. Noah goes to hospital regularly for essential checks to see that the shunt in his brain is still doing its job.

“It’s what’s keeping him alive.”

“Can we get your braces on, please? We’ll put that through there. You want to pull it tight?”

Noah’s paralyzed legs need braces.

“Pull it down. Press it down. This one down in good, lad.”

He has to sleep next to his parents so that he can be turned through the night to prevent bed sores.

“Good boy. Night night. Let’s go.”

“I can’t be grumpy. I can’t complain about the weather. I can’t complain about this. I can go, that’s because Noah’s got so much more to go through and he’s cheerful all the time. If he can deal with what he’s got to deal with and be happy and cheerful, then every day is a brand new day.”

And every day starts with Noah’s routines.

“You’re so strong, Noah. Look on my back. Yeah, we’re having a look. This is Noah’s spina bifida, isn’t it? So all that, that’s what the scar is. Miss Nicholson’s actually put every single layer of skin back together. Um, yeah, we’ll give you a really good stretch, shall we? There we go. So, this one here doesn’t actually straighten. Um, so we have to just help it a little bit.”

But it’s not always easy for Noah or his mom.

“See, you all right? Hello. Hello.”

Rob and Shelly never give up on the brain training they have devised between them.

“Would you like to make a candle?”

“Obviously having Noah’s brain grow back and doing as well as he is. Whether it’ll develop anymore, I’ve got no idea.”

“Are you going to roll it? That’s awesome. You made that.”

But there are still unanswered questions about why Noah isn’t brain damaged.

“We’re not medical people. You read medical textbooks, you can’t understand half of it. We are by no means experts, but, uh, we may be experts with Noah. So we know what he’s capable of. We know where it’s come from and what he can do.”

“I love you.”

“I love you, my darling. Thank you.”

Nearly 200 miles away in Hull, 6-year-old Jake Gladstone is starting another day at his local primary school. Jake had a bigger brain than Noah at birth, but he had severe neurological problems of his own. Could Jake’s progress hold clues to the future for Noah if he continues to improve?

“Everything was fine. Pregnancy was perfectly normal. He was all right when he was born. After about three or four weeks, I noticed that he wasn’t, um, turning to the right and he wasn’t using his right hand for anything in the cot. Um, he was using his left hand to grab hold of things on the cot side, but not his right. He had an MRI when he was 6 months old and they found that quite a large amount on the left-hand side of his brain is missing.”

“Let’s use your brain and let’s get you to choose another color.”

“I think it’s light blue next.”

“A light blue next. Okay, then.”

“It looks as if he had an in utero stroke which damaged a very large part of the left side of his brain and has left a large area of what we call cystic encephalomalacia, which is a large cystic area. There’s no brain there where that dead brain was, it has all gone, and it’s just fluid now.”

“Maybe you can finish coloring that in later.”

Even with half a brain, Sarah didn’t think her son would be able to do very much at all.

“We were expecting just nothing really. Just a child who couldn’t walk, talk, or speak.”

But Jake was doing lots of things, and his mom and dad couldn’t understand how.

“Well, how can he be here breathing and moving if he’s missing that much brain?”

But the reason seemed to lie in the fact that it had happened when Jake was a baby and not an adult.

“If that sort of injury occurred in somebody who was a teenager or an adult, it is unlikely that they would recover the same amount of function because the plasticity of their brains is less. The brain doesn’t regenerate. When brain tissue or spinal cord tissue dies, that’s it. And the way that function returns is by the recruitment of other pathways. This is an emerging area of research and it’s something where children have a head start because their brains are still growing.”

“The ability of the adult brain to form new connections is considerably less robust than it is in a baby.”

Jake has epilepsy and he can’t move his right arm.

“Developmentally he is about three in a lot of things. Other things he’s fantastic at, but majority of things he’s three. He is doing much better than everyone expected and he loves school.”

“Never in a million years did I think he’d go to mainstream school. Not at all.”

“One of the things that we see in children like Jake, that plasticity has resulted in the movement of the functions to the non-damaged half of the brain. That’s pretty amazing.”

“Can you put these in there for mommy, please? All of them. That’s it.”

Dr. Scott now thinks this is exactly what’s been happening with Noah.

“Over time, he’s been able to develop and much of his cortical brain tissue seems to have improved a great deal. And that’s what’s supporting his skills like memory and concentration.”

All that brain training his parents have been doing is the sort of stimulus that his brain needed to kick it into action.

“That’s the first time he’s done that.”

“No, I don’t know.”

“So, he’s obviously watching every single thing.”

“Plasticity is a really exciting area of neuroscience.”

“Ready?”

“Most of the research into the effects of brain injury have been in adults and I think Noah’s case tells us we should look more at children and how the child’s brain achieves plasticity, its ability to recover. If we could learn how it does that, then maybe we could improve the recovery of adults as well as children after a brain injury.”

For Dr. Scott, Noah is a living example of how new pathways can be formed in the brain. And Noah could unlock this developing area of science.

“Noah can help us understand these extraordinary changes that can happen in the human brain.”

But the odds are stacked against Noah physically. Suddenly, the family have to rush him to the emergency department of the hospital where they’ve cared for him from birth.

“He’s not been well for about 7 or 8 days now. He’s got a cough, sneezing. Uh, on a Friday he had a high temperature of 104 and he was quite lethargic. So those can be symptoms, uh, of shunt problems which is obviously life-threatening. So, we’re quite worried.”

If Noah’s shunt gets infected, it could easily spread to his brain and he will need immediate surgery.

“We came through on Friday night and they kept him in. We ended up getting a bed around about 20 past 3 in the morning.”

With such a weakened immune system, Shel and Rob have to act quickly every time Noah gets any type of infection.

“Good boy.”

“Looking at him and assessing, he’s got a cough and a snotty nose. He’s obviously not being himself and I can see that that’s worried you and I understand that. But looking at him, he looks like a well boy with a nasty sort of viral respiratory infection.”

“He’s got some complex, um, you know, problems in his history. I’ll have a chat with my boss and make sure that they’re happy to let you go as well. And that would be nice to go home.”

“Bye.”

Now Noah is out of immediate danger. The whole family can go back to Cumbria and get some rest.

A few days later, the family get a visit from Harley Street neurosurgeon Dr. Chris Chandler, a friend of Dr. Nicholson’s. He’s heard about Noah’s case and has come to see his progress for himself.

“Oh, no. I’m just an old man.”

First, he checks to see if Noah’s all-important shunt is continuing to protect his brain.

“Okay. So, Noah has got a shunt. It starts here and it comes down behind his ear just like that and it goes down over his collarbone. The tubing is just here and it goes down into a small opening in his tummy. There’s a little valve and a little button just here under my finger which controls the movement of fluid down that shunt. I can feel it and I can pump the reservoir with my finger and it opens and it fills and refills readily which is brilliant, which tells me that it’s working properly, isn’t it? Look, we can look at the size of his head and say that actually his head circumference is large, larger than we might expect for a child of his age, but that’s because of the underlying problem.”

“I can’t even find number one.”

Dr. Chandler moves on to testing Noah’s development.

“Give it another go. 1, 2, 3, 4, 5. Can you put them in order? Go on. Let’s see what you can do. Which of these is number one? Which number is that? Look.”

“What number is that one?”

“Four.”

“Four.”

“Yeah. Number four. Are you sure?”

Noah’s struggling with the numbers, so Dr. Chandler tries something else.

“Very good. So, let’s have a look. Hold them straight. Hold them straight. Now, close your eyes. Touch your nose with your finger. Okay, that’s good. At the moment, he’s showing some signs of developmental delay, but a child whose development is delayed at age four is not necessarily going to still be delayed at age eight. Put the blue one on in the same way. Looking at him today, the shunt seems to be working brilliantly, and that’s great. And you seem to be pretty perky. You do, Mr. Happy. Yes, it seems that there is a degree of developmental delay, but I stress that there is a huge variation in what children can achieve.”

“Is there anything that we can be doing to his development? We try and do as much as we can.”

“Noah is getting an incredible amount of input and stimulation and that’s what they need. You are one amazing kid. You are, aren’t you?”

“Yeah.”

“Oh, I’m glad you realize that, too. That’s very important. Based on what he’s done so far, there is no good reason why you shouldn’t continue to develop, you know, relatively normally intellectually. That is obviously the key to independent existence. It would be really interesting to follow Noah, to scan his brain again and see what he’s like in 10 or 15 years’ time. His parents give him a phenomenal amount of input and they’re doing everything that I would want a parent to do in this situation.”

Dr. Chandler has one last question for Noah.

“What are we going to teach other doctors? Can we learn anything from you, Noah?”

Noah was born with just 2% of his brain. And ahead of his birth, his parents were warned to prepare for his funeral. But Noah survived. And then baffled doctors further when a scan last year appeared to show his brain had grown back.

“Where’s your brain?”

“It’s there.”

“In where? Point to it. In there, is it?”

Noah may only be 3 years old, but he has become a bit of a medical celebrity.

“I’m going to go to bed now. I need to get up early in the morning.”

“I know.”

Brain researcher Dr. Greg Scott believes Noah’s development represents a potential breakthrough in his research. So, he’s asked Shel to London to give a talk about Noah’s unique brain to a conference of neuroscience students.

“Looking forward to seeing Greg tomorrow. Um, and I’m sure Noah will be as well. Uh, we really liked him. Hi, Greg. So, yeah, I’m looking forward to that. I’m looking forward to actually just going and speaking to everybody. Bit nervous really, but we’ll just have to wait and see.”

“There you go. Wow.”

Everyone is excited about Shel’s presentation.

“This is my brain.”

And his sister Steph is getting Noah ready for his big audience.

“Stressful. Stressful sometimes.”

“Stressful.”

“He absolutely loves meeting new people and he’ll always have a picture taken and everybody falls in love with him when they meet him. We have to remember everything, don’t we?”

“Yeah.”

Medical students are gathering in Imperial College to see Noah.

“Noah, you’re very fast in that. We could paint go-faster stripes. That will make your chair go even faster. What do you think?”

Dr. Scott wants to show the students that Noah is a living, breathing example of plasticity in children’s brains.

“So I asked Shel and Noah and the family to come along so that Shel has an opportunity to talk about Noah’s case from her point of view, but also to learn something interesting from a scientific point of view about what we can learn about how the brain copes when there’s a brain injury or a problem that means that it can’t develop normally.”

“Hi, I’m Shelly. I’ve got my hubby here today and my daughter Steph and Noah. I’m a medical doctor and like you all here my passion is neuroscience. It seems we know pretty much how every other organ in the body works but the brain in all its complexity is still very much of a mystery. I think Noah teaches a lot of people a lot of things. I think he teaches the medical profession that you can’t ever know. Doesn’t matter how many statistics you throw at something, you can’t predict. From day one, he’s come on so much. He signed ‘milk’ at 6 months old. He actually used a wheelchair at the age of one year old and he said ‘for’, didn’t you, at the end. Yeah. ‘It’s no big deal, Mom.’ Um, so that was so funny. Now we’ve gone on to having full conversations with him and life has never been the same since. I can tell you every day is an amazing day to spend with Noah.”

“Noah is a tribute to his family and also I am sure a tribute to the medical and surgical teams that have been looking after him. In the MRI slides, I’m interested in structures like the basal ganglia, all other forebrain structures. Where did they even go? They didn’t even seem to be there.”

“I mean, one difficulty is trying to relate whether the structures are there at all versus whether they’re just highly compressed. I think you give the analogy of like a sponge.”

“We always thought his brain must be all there squashed by the fluid. Seeing those scans is a kind of a wakeup call to make you realize that the things that we can do, cognition and consciousness, they don’t need the brain to be a particular way structurally.”

“There’s something specific and unique about neuroplasticity and children’s development following a brain injury.”

“But I completely agree there seems to be something about childhood development that means the brain is very plastic. If we could just have even a small part of that ability that the brain seems to have in adults, if we could recreate that, then that would be amazing.”

“Yeah, I think it was really inspiring. It was amazing. I never knew that someone can still live with such a little brain.”

“His story is really incredible because it’s like a one in a million maybe.”

“It taught us a lot about things that we thought is impossible to happen.”

“Did you like learning about your brain?”

“Big.”

“It’s big.”

“It’s big. Yeah.”

Noah’s case is a message of hope for anyone with a brain injury.

“He is an exception. It’s not that every child with spina bifida who starts out with that scan is going to be, you know, as he is. But you know it gives you hope really.”

At home in Cumbria, family and friends are arriving to celebrate Noah’s latest milestone.

“It’s his fourth birthday.”

He was never expected to make it this far.

“I feel very lucky, very honored to spend that time with him. Very lucky that I have him, very lucky that I get to share him with people.”

“No one can be sure how much he will yet achieve. I just know that we’ll all always be there for him and we’ll do whatever it takes for him to be able to live as normal a life as possible.”

And who can predict how this incredible little boy will change our understanding of the human brain?

“I can see him inspiring a lot of people as he does already. And I’m sure he’ll have a really fulfilled life.”