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Baby's battle with heart and brain growths
7:00pm Friday 15th February 2013 in Echo News
A SINGLE mum is determined to raise awareness of a condiiton her first born son will suffer with for life.
Toby-Jay Harding was born early at 36 weeks by emergency Caesarian section after mum Samantha Harding suffered terrible abdominal pain.
A scan found that he had little white tumours on his heart and Samantha, 20, was told he may have the genetic condition tuberous sclerosis.
Due to his heart condition Samantha had to be transferred to specialist hospital St Thomas’ in London for the operation.
Toby-Jay was born weighing a healthy 7lbs 3oz but had to be kept in for more checks and was kept in neonatal intensive care.
An MRI scan when he was just four days old revealed he also had the tumours on his brain.
However Samantha having been warned a few days earlier had prepared herself and was armed with research on the rare condition.
She said: “When the doctors first told me they were shocked I wasn’t crying. I just accepted it. I had done my research and have just taken things day by day.. He’s still my little boy and my first baby.”
The effect of the tumours on the brain is they cause seizures and so he needs medication to control them.
Samantha, of Hornsland Road, Canvey, said: “On a couple of days he had over 40 seizures which was really scary.
“But this is the beginning of everything, its all part of the condition. He could have autism when he’s older or learning or behavioural difficulties but I’ll deal with it.
“The tumours on his heart can be left alone they just need to all be checked.
“There’s one which if it gets bigger it could block an artery so we have to go to the hospital every other month for a heart scan.
“In some people the tumours shrink as they get bigger and disappear, or they stay the same. If they get bigger with him, he’ll need an operation.
“It’s a waiting game and I just have to see what happens.”
Toby-Jay stayed in hospital for 14 days before he was allowed home for the first time. He remains on continous medication.
But last week after a massive seizure he was rushed back to Southend Hospital where he will remain until they can find the correct dose to stop the seizures.
Toby-Jay, now almost four months old, is filling his mum’s world with delight.
Samantha, who says she has had fantastic sipport from family and friends, added: “It’s not nice seeing him have seizures but the times he is ok I just make that count. I try and focus on that.
“He’s keeping my hands full. but when he has good days I just run with it. Every time he smiles at me it makes it all worthwhile.
“In the meantime I want to make people aware of the condition, no-one seems to have heard of it and even some doctors are unfamiliar with it.”
Her sister Nickie Loates is doing a skydive to raise funds for the Tuberous Sclerosis Association where Samantha has sourced her information. She also hopes to organise a charity night once Toby-Jay is well.
For information and help visit www.tuberous-sclerosis.org