Toddler screaming in pain with bad back diagnosed with rare brain condition

A mum has revealed how she begged doctors to listen as her toddler screamed in pain while suffering from debilitating back pain.

Samantha McGee, 32, has opened up about how her son Lenny went from telling her that his lower back was hurting, to being diagnosed with a brain condition.

The 32-year-old said that her son, who was only one at the time, told her that his back was hurting as he sat in his car seat.

However, the mum did not think much of his symptoms, and put it down to him falling over in nursery, report Liverpool Echo.

But, the pain started happening far too often, and one day as Lenny was playing on the floor, he started screaming in pain. Immediately, Samantha and her husband rushed Lenny to A&E.

But strangely, after checks, the parents were told the toddler was fine.

Speaking about the beginnings of his symptoms, mum-of-two said: “He was in nursery and he was complaining in his car seat saying his back was sore, but he was only one and half [years old] at this point, so I thought maybe he had fallen over in nursery or something like that.

“That had happened a couple of times, so I would get him out and rub his back and he was fine and got on with it. Then one day when we got home, he was sitting on the floor and he was playing on the floor and as he stood up and he just screamed out in pain and dropped to the floor and was just crying saying ‘my back, my back’, like the whole bottom of his back.

“So I said to my husband ‘I am not happy with that’ and we took him straight to A&E. They looked him over and said ‘no he is absolutely fine, nothing wrong with him’ and [we] took him home.”

Lenny’s pain kept on persisting and the screams happened on a few more occasions after the trip to emergency.

Samantha recalled her son’s screams being alike to someone who was in “really bad pain,” and so decided to rush him to hospital once more.

The 32-year-old said a number of medics saw Lenny and carried out a “every test imaginable” but said they could not find anything wrong with the toddler.

However, Samantha said she told doctors “as a mum I know something is wrong.”

Following this, Lenny was sent to another hospital where further tests were carried out.

And finally, the family were given the answers they so desperately needed, with medics informing the parents where exactly the toddler’s pain was coming from.

The mum, from Knowsley Village, Merseyside said: “Lenny was only one at this point and she [the medic] said ‘Lenny what’s happened?’ and he said ‘my back hurts, right there’ and he pointed to the bottom of his back and he showed her exactly where it hurts. She said ‘I am not happy he can tell me that aged one, the pain must be really bad for him to know’.”

At the beginning of September, the toddler was sent in for an MRI scan and the parents were told to expect the results in four weeks’ time.

However, to Samantha’s shock, she received a phone call the following Monday and told them Lenny had a brain condition.

The two-year-old was diagnosed with Chiari Malformation Type I, which is a rare condition in babies and children.

This is where the lowest part of the back of the brain extends into the spinal canal, which can put pressure on the brainstem and spinal cord, and obstruct the flow of fluid.

Samantha explained, saying: “Basically his brain is too big for his skull. His brain over-leaked his skull and was starting to stop the fluid from going down his spine and flowing round his brain like it should do. His symptoms were lower back pain.”

Doctors said Lenny would need an operation, but booked another scan for three months time for November 10 to see if his condition worsened. Doctors told the two-year-old’s parents to call if it did get worse.

Shortly after this Lenny started suffering with severe pain in his knees, which left him crying in pain and unable to walk.

The toddler also started suffering from painful headaches.

Samantha once again took him to hospital on October 20 and Lenny was sent for another MRI scan.

She said: “When the baby was waking up, the surgeon walked into the room and said to me ‘I have looked at his scan already and it has gotten progressively worse. All the fluid balls that have locked on his spine have burst open and his brain is starting to be pulled down his spine now’.”

Medics said they would need to operate quickly and Lenny had decompression surgery on his brain on November 11 – one day after his next MRI scan was scheduled – which involves surgeons making a cut to the back of the head.

The surgeon then removes a small piece of bone from the base of the skull and may also remove a small piece of bone from the top of the spine, which should help to reduce the pressure on the brain and allow the fluid in and around the brain and spinal cord to flow normally.

Lenny will always have the condition and it is unlikely he will be able to play contact sports or go on things such as fairground rides.

However, despite what he has been through mum Samantha said Lenny is a “happy little soul.”

She added: “Going forward we don’t think he will be able to play contact sport, go on the fair, all that type of stuff. All that is out of order for Lenny now, so it has changed his life in a way because all the stuff that children and boys his age will be doing, he now can’t do.

“In a way it has sort of changed how he is going to live. But he is a happy little soul. He has been amazing and you wouldn’t even know. He’s been so good. He is so, so brave, he was just unbelievable.”