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Vital Family launch fundraiser to help fund vital treatment for toddler with complex needs

16 month old Caleb is being assessed for a number of conditions

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The family of toddler Caleb O’Loughlin have launched a fundraiser to help get the 16 month old vital treatment for his additional needs.

The young Limerick lad, who has scoliosis is currently being assessed for autism, Spina Bifida Occulta and Tethered Cord Syndrome.

“We had a traumatic birth, Caleb was born with the cord around his neck but they had told me at the time that he was fine, he needed no intervention and that he would be a happy healthy baby,” his mother Donna told sundayworld.com.

Since he was less than two weeks old, the smiley young boy has been in and out of hospital for various reasons in his short life.

“When she took him home from the hospital and at 10 days old he stopped breathing and his lips went blue.”

“I brought him into the hospital and they told me I was feeding him too much. It kept happening, and it got worse so I got a private paediatric consultant.”

It was at this point Donna was told that her son had an allergy to cow's milk but other than that she was reassured that he was healthy.

Months later in June 2021, Donna noticed that Caleb wasn’t able to respond to her.

“I thought he was deaf so I got him a hearing test and it was clear,” she explained.

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Caleb with his parents Donna and Joseph and his older brother

Caleb with his parents Donna and Joseph and his older brother

Caleb with his parents Donna and Joseph and his older brother

 

When he visited the public health nurse for his 9 month developmental check Donna said that the nurse was worried that because Caleb’s muscles were so rigid that he could have Cerebral Palsy.

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Due to his and his communication issues, he was referred to a private neonatologist who assessed Caleb by conducting a brain MRI.

Donna told the consulting doctor about a muscle which had grown out of Caleb’s back earlier that month. Concerned it might just be his posture, he agreed to take a look at it during the scan.

“At that stage, he couldn’t sit, he couldn’t hold his head up, he couldn’t crawl, he couldn’t do anything, he was like a newborn,” Donna said.

She was once again told her son was fine.

“The results of MRI ruled out Cerebral Palsy and Spina Bifida, he told me: ‘It’s perfectly clear, Caleb’s 100% fine’.”

“I said ‘well the public health nurse is worried about him,’ and he said to me ‘the only thing that’s wrong with your son is your anxiety’.”

“He said that's all that's wrong with him, if you leave him alone he will be fine.”

Donna, who suffered with postnatal anxiety after Caleb’s traumatic birth, was taken aback by the doctor’s comments.

“When he told me basically this is all in your head, you're making your baby unwell, he sent me into a worse depression, I never had depression in my life until then.”

“I started thinking ‘there's something wrong with me’ and went to a therapist who told me there was nothing wrong.”

In August 2021, Caleb once again underwent a developmental check and once again couldn’t pass any of the tests.

“If anything, he was worse,” she said.

“He wasn’t babbling, he was making terrible noises with his throat, like a growl-like noise.”

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At this stage she thought he might have autism and he was referred to once again for another assessment. During which Donna was told that he may have scoliosis. At this point he was once again referred, this time to Crumlin hospital for a spinal exam.

After being told they would be waiting for two years for the assessment, the family were once again forced to fork out for a private x-ray where the diagnosis of scoliosis was confirmed, but the doctor believed there may be more wrong with him.

“He could only use one side of his body to crawl, and after months of physiotherapy he should have been improving,” Donna said.

“The doctor told me ‘I think he could have Tether Cord Syndrome’, when I told them that the previous MRI ruled out Cerebral Palsy and Spina Bifida he said to me: ‘No Donna, we can’t rule out any of that because Caleb is too young to rule it out.’”

Reeling at the news, Dona set up a Facebook page called ‘Caleb’s Journey’ to help her raise funds to bring her young baby to yet another private MRI scan.

“I was trying to get help to get this MRI done faster because I wanted to find out what was wrong with Caleb and get him the help that he needed.”

“Then I started the GoFundMe because things were costing an obscene amount of money, going to all these appointments and he needs therapies and interventions and everything.”

When she noticed her son began having spasms she brought him to hospital (the same one that told her Caleb’s MRI was clear) where she was told he was “just excited” and to bring him home. Worried after the spasms continued, she took him to a consultant in Dublin for a second opinion.”

“He knew there was something wrong, so he referred me to a doctor in Temple Street.”

At the appointment in Temple Street, the doctor took a look at little Caleb’s MRI scan told Donna that the back of her son’s brain was thinner than the rest.

“He said ‘but what I’m really worried about is the amount of significant brain damage Caleb has’, so I looked at him and said: ‘What are you saying about brain damage?’”

“He said ‘you know from the MRI that he has brain damage’ and I said no, I was told that was clear.”

Fearing he could have a genetic disease, Caleb, Donna and her husband were instructed to have blood tests to see if they could figure out if he has a condition, and if so, what one.

“We're still trying to keep the GoFundMe going because now we have a worse situation, there’s no cure for Caleb’s brain damage.”

“If I raise 100,000 I could guarantee by this time next year, it will be gone because Caleb’s needs are massive.”

You can donate to the O’Loughlin’s GoFundMe here.

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