Battling against the odds
Published 01/10/2013 | 05:42
HARVEY SMITH (4) and his brother Archie (3) were born nine months apart to the day, weighing 1lb 6 ounces and 2lbs 3 ounces respectively.
Despite Harvey's weight and fears that he wouldn't survive due to a multiplicity of health problems, he has made amazing strides forward in life. The same can be said about his little brother.
Both brothers suffer from severe cerebral palsy and require round the clock care.
His parents Paul Smith and Michelle O'Connor, (who benefit from the fantastic support of the Jack & Jill Foundation for sick children), are organising a fundraising weekend in Campile this October Bank Holiday weekend for the organisation and to raise money for a new vehicle to help transport their children to hospital on their regular trips to Dublin.
Over the past four years both Paul and Michelle have spent more time in and out of hospitals across the east coast with their children than most.
Michelle said: 'Doctors didn't think Harvey would survive the pregnancy. He was born at 27 weeks, weighing only 1lb 6 ounces. I lost my waters at 19 weeks so he had eight weeks with very little water which meant Harvey's lungs didn't develop.'
For Michelle and Paul the excitement of having their first child turned into an anxious waiting game to see if their child would survive the pregnancy.
'Every minute of the day you would be waiting for him to kick or move just to know he was still alive,' Michelle said.
From 19 weeks into her pregnancy until Harvey was born at 27 weeks, she had to go to Waterford Regional Hospital numerous times for scans.
'They couldn't understand how I was able to carry him for so long without any water. He had no lungs only casings and was born with bioplasatic lungs. He only had enough water for his kidneys and bladder to develop. You are meant to carry 10 cm of water for a baby to survive and I only had between two and five centimetres.'
Harvey was born on March 9, 2009. He spent 15 months in neo natal care once he was born, before returning home. as we talk Michelle produces his soother from that time, which is no more than a few centimetres long.
Exactly nine months after she gave birth to Harvey, his little brother Archie was born, on December 9, 2009.
Michelle said she stayed positive throughout everything and believed that her son would survive, while also caring for Archie.
'I had faith in him as he had come this far. He was a fighter to survive the pregnancy. At the end of the day he was the one doing all the fighting.'
Describing the first year as extremely difficult, she said Harvey had to contend with numerous illnesses.
'He had a Grade 1 bleed to the brain and kidney infections. Anything that could hit him he got. He had a hernia operation which went wrong and now he has chronic lung disease.'
Harvey was diagnosed with quadriplegic spastic cerebral palsy (one of the most severe types).
'All four limbs are affected,' his doting father Paul says.
'He has no support in his neck, but can move all his limbs but just can't use them.'
Paul says the early medical intervention Harvey got has given him the best chance of making great strides forward in life.
'We're finding out more about his motor skills as they develop. They thought he would be blind or deaf and would have to be fed with tubes all his life, but now dietitians hope he'll be able to take food normally one day as he is pipe fed at present.'
Throughout those first difficult months at home the HSE supplied a nurse to help care for Harvey 16 hours a day, seven days a week.
Paul says: 'Michelle thought by bringing him home it would bring him on. We had to move house here to Killesk because our previous house was too small for the amount of stuff we needed. Harvey's room was like a little hospital but we're trying to make it more of a boy's room now and as normal as possible.'
Paul said Michelle's second pregnancy was going perfectly until she got an awful pain one day.
'A scan showed she had a very small cervix. She was scanned regularly and he was born when she was 26 weeks and four days pregnant. He was on oxygen full time and spent ten weeks at Waterford Regional Hospital.'
Paul said both he and Michelle weren't too perturbed when they learnt that Archie also had cerebral palsy, which affects the left side of his brain.
'After everything we went through with Harvey it didn't seem to matter. I don't know why but it didn't. We'd been through such a rollercoaster.'
Paul had to stop working at Hart's pub and shop in Campile to look after his children.
He says: 'Michelle wouldn't have been able to manage on her own. You need two people here all the time, especially if a seizure happens at night. Even when you go to the shop and meet someone you're thinking of the boys at home.'
Both Harvey and Archie wear splints and Archie uses a walking aid, and Paul and Michelle are hopeful that Archie will be able to walk independently one day.
Paul says of Archie: 'He is doing really well, but isn't able to walk independently yet. He has a specilised buggy and they both have standers which are supplied by the HSE.'
The HSE no longer provide a nurse to help look after Harvey or his brother so the Smith family are very reliant on the Jack & Jill Foundation who assist parents with sick children up until the child turns four.
'Since we lost the HSE nurse Harvey has started having seizures. Someone has to watch Harvey all the time because of them.'
When this newspaper called to the house Archie was playing with his father and Harvey was watching TV. There was an oxygen tank in the hallway for Harvey, in case of an emergency, but both Paul and Michelle try to make the house seem as normal and child friendly as possible.
Paul describes the Jack & Jill Foundation as a 'lifeline'.
'The nurses are like a friend; you feel really comfortable around them. It never feels clinical. They seem to use the hours they're here for the parents so we can go out and have a bit of fun every now and then.'
The Smiths get 12 hours assistance per week.
'We usually use them at night time so we can get some sleep. We have Harvey on a monitor all night. You can never really switch off.'
Paul and Michelle say there is no history of cerebral palsy in the family. They hope to get more help from the HSE but know the situation with cutbacks.
Paul says both he and Michelle want to raise money for the Jack & Jill Foundation to ensure other families can benefit from the priceless assistance they provide.
'These are the type of kids they look after; kids with severe neurological conditions.'
Over €17,000 was raised following a major fundraising drive in Hart's bar, Campile in 2009 for a state-of-the-art incubator for Waterford Regional Hospital.
'By pure coincidence Archie was the first child to use the incubator which cost €50,000, as the HSE also provided funding,' Paul recalls.
The Smiths also hope to raise money to help them to buy a wheelchair accessible vehicle.
'Our current vehicle isn't big enough for Harvey. We've a lot of appointments in Temple Street Hospital in Dublin,' Paul says.
Archie has started at Pondfields Day Care School n New Ross which he attends three mornings a week and Harvey attends St Patrick's Special School in Enniscorthy.
'We need someone medically trained to transport him, so we'll probably need a new vehicle to get him to school.'
Like all parents, Paul and Michelle want to give their children the best possible chance and believe a good education is the way forward.
Rubbing Harvey's hair, Michelle says: 'There are a lot of people a lot worse off than us but you still need that initial help. I just don't understand how they can cut health care when they don't know what budget they will need every year because with health you can't budget a year in advance.'
Paul and Michelle are organising a number of events on the upcoming Bank Holiday weekend and would be grateful if any acts would perform. Businesses who would be interested in supplying prizes for a raffle can also contact Paul at 086 8738963.
'Any musicians, DJs, children's entertainers and anyone who would like to perform on the day and get involved would be greatly appreciated,' Paul said.
Paul said he hopes all three pubs in the village will get involved in hosting the fundraising events.