Thursday 17 August 2017

'Seven years on we're still dealing with the fallout' - Mum whose newborn contracted meningitis

Meningitis is a medical condition that needs to be taken very seriously. Caroline Graham tells Joy Orpen about the difficulties her son, Daniel, has faced since he got the illness when he was just a baby.

Caroline Graham and her son Daniel (7) from Blanchardstown who had meningitis as a baby.
Picture By David Conachy.
Caroline Graham and her son Daniel (7) from Blanchardstown who had meningitis as a baby. Picture By David Conachy.

Caroline Graham's Blanchardstown home is full of soccer boots, soldiers and Action Man in his various incarnations. That's not surprising, given that she and her husband, Damien, have five boys, ranging in age from three to 16 years.

"It can be chaotic," says Caroline, who still manages to look serene in the midst of all this maleness. "The only girly things around the place are mine," she quips, while gazing at Daniel, their third son. He is curled up in an armchair, immersed in a video game, while his mother discusses the obstacles they have encountered in trying to get a fair deal for him. He certainly needs all the help he can get, given that he suffered a potentially fatal illness shortly after his birth, and, as a consequence, has many ongoing challenges to cope with.

It all began on the 21st day of his life, with what appeared to be a common cold. "We weren't too worried, because one of his brothers had just had a head cold," says Caroline.

However, when she checked Daniel at 6am the following day, she discovered he had a temperature. Nonetheless, he had his feed as usual. But, as the morning wore on, Daniel began to cry if he was held or moved. When she tried to wind him, his head flopped forward, and he let out a high-pitched scream.

She also noticed his hands and feet were freezing. Having called the hospital where Daniel was born, she was advised to take him straight to Our Lady's Children's Hospital, Crumlin. As soon as a nurse attended to the baby, he let out the same high-pitched scream, so she rushed him to the resuscitation unit.

"The doctor said they were assuming he had meningitis and would give him antibiotics straight away," explains Caroline. "He then had various tests, including a lumbar puncture, and was admitted to the hospital."

Caroline Graham and her son Daniel (seven). Photo: David Conachy
Caroline Graham and her son Daniel (seven). Photo: David Conachy

According to Caroline Krieger, medical information officer with the Meningitis Research Foundation (MRF), this disease causes inflammation of the lining around the brain and the spinal cord. "It can be very serious if not treated quickly," she warns. "It has the potential to cause life-threatening blood poisoning (septicaemia), permanent damage to the brain or nerves, loss of limbs, and in some cases, death.

"In the early stages, it can be difficult to tell meningitis and septicaemia apart from milder diseases, as they often resemble common viral illnesses."

She says that knowing the signs and symptoms of meningitis is crucial, as is the need for urgent, potentially life-saving medical intervention when it does present.

Daniel's mum says there was a huge sense of unreality about the whole situation. Even though she got little Daniel to hospital so quickly, he was already "a very sick baby", so he was put on a drip and given four different antibiotics. He was also clearly distressed. "Hearing him cry would break your heart, it was so anguished," she says. "What is a mummy for, if not to make things better? I felt so powerless."

As the days rolled by, there were concerns about possible brain damage. A cranial ultrasound delivered a negative result. However, a subsequent ultrasound picked up damage to the right frontal lobe and to the left posterior parietal lobe.

They were warned that Daniel was likely to experience long-term problems with concentration and behaviour, and that he was more prone to seizures. He remained perilously ill until his fourth week when, finally, his infection levels began to drop. Two weeks later, he went home.

"Seven years on, we're still dealing with the fallout," says Caroline. "From the age of three, Daniel's 'terrible twos' phase was on a completely different level. Once, when I was driving, he undid his four-point car seat belt, grabbed me by the hair and pulled my head back. One of my other sons managed to contain him, until I could stop the car safely. That was not Daniel's fault," she says most emphatically. "It was the brain damage."

Over the years, Caroline has battled to get appropriate help for her son, but she says the system fails when it comes to acquired brain injury in children. "There is nothing for those kids," she says.

Meanwhile, she is grateful for the Child and Adolescent Mental Health unit in Blanchardstown where Daniel has been assessed. "They have diagnosed him with autism, sensory processing disorder, cognitive social impairment, cranial irritation, ADHD, and more recently with dyslexia.

In spite of all this, Daniel has a special needs assistant (SNA) with him in his mainstream school for just 40 minutes a day. "It's not the school's fault - they try to give him more SNA time," says Caroline. She blames the system in general, while explaining that Daniel needs someone who can 'read' him - who can tell when he's getting stressed.

"He doesn't like anyone in his space or making eye contact. Anything at all could set him off, and then he becomes a flight risk. He could run into a busy road or get lost in a crowd. But I won't let these things define him - this is not his fault. It's the head injury that causes all that."

She says that otherwise, Daniel is a bright child who can talk knowledgeably about space and science. He has a great sense of humour and is generous and kind. "He lights up a room when he comes into it," says his mum. "He's a really interesting kid, but he is complex."

What has been a life-changer for Daniel is the equine programme at Child Vision in Drumcondra. "His very first time on a horse, his body language completely changed," says Caroline. "The instructors really understand what is going on with Daniel, and since he started riding, the frequency of his meltdowns has decreased significantly."

She hopes fervently that a place for Daniel can be found at a school that caters for children with autism. "That would suit him much better, because classes are small and there is more support. All that would help make his day easier."

In the meantime, Caroline is fully supporting the GSK Tackle Meningitis campaign which aims to raise awareness about this disease. She also wants people to understand the long-term implications of an acquired brain injury.

For more information about this condition, contact the Meningitis Research Foundation, see meningitis.org

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