SEARCH FOR CURE - Parents say they can’t wait for NHS to treat baby ’s eyesight problem
Mary Dowrick, her husband Chris Swiggs and their son Oliver. Photo Paul Williams
30th June 2021
By Natasha Swift
A St Stephen family whose 11- month-old baby was born with a rare eye condition that will cause “irreversible damage” to his vision is raising money to pay for an operation abroad.
The NHS won’t operate on Oliver Dowrick, who has congenital ptosis a condition that causes the eyelid to droop until he is around nine, when he will be old enough for a piece of tissue to be taken from his thigh to try to correct the problem. But his mum Mary Dowrick and dad Chris Swiggs, who live in Terras Road, say the “outdated and invasive surgery” being offered to Oliver would come too late for him as “it does nothing to prevent easily avoidable secondary conditions”.
In more severe cases such as Oliver’s, by the time he is nine not only will his eye and vision have been damaged by his eyelid constantly pressing across his pupil, his neck and posture will also be malformed by his need to gaze upward.
The married couple, who have five children aged from 19 to baby Oliver, also worry he will have to endure years of psychological trials with potential bullying and social insecurities.
In their “desperate” search to find out more about the rare condition, Mary discovered that Spanish surgeon Dr Ramón Medel performs a less invasive “frontal flap” surgery as early as possible to avoid long-term damage.
She said the surgery is successful, and performed without putting the child under general anaesthetic. Now the couple want to raise £5,000 towards the cost of the operation.
Mary believes the procedure would give Oliver the chance of having a “healthy growing body and unaffected sight”. The family is concerned their baby’s health and future well-being is “hanging in the balance” and the couple fear they are “racing against irreversible damage”.
Mary, 38, told the Voice: “When Oliver was born his left eye was swollen and didn’t open immediately like his right eye did. They are all quite puffy to begin with. “But as time went on, I’m analysing the eye waiting for it to get better and it didn’t”.
“I went to the doctor and they said it was a blocked tear duct, which made me feel better as I was getting anxious by now. “Then as weeks went on, nothing changed with this blocked tear duct so I started googling what it could be and then I found rare ptosis symptoms and they all matched what was wrong with Oliver.
“I went back to the doctor and said I think it’s ptosis and the doctor said, ‘I have never seen that, I wouldn’t have thought so because you just don’t see it, it’s very rare.’ “Again that made me feel slightly better, but I was still thinking it could be.”
Oliver was referred to see an eye specialist at Treliske where what seemed like a harmless cosmetic condition that gave him a droopy eyelid was confirmed as congenital ptosis.
“I had already faced facts at that point,” Mary says. “They said what they would do is wait until he is eight or nine, which is when they develop the gristle in their thigh, and use that to make a sling to get the eyelid to open. I was told that’s only when they can do the operation. They wouldn’t do anything unless his vision was compromised by the lid covering more and more of his pupil which often happens. “
“They would then give Oliver surgery using silicone or mesh instead of the gristle. That is not a one-off operation as they fail and drop back down, it can get infected, there are lots of negatives about this, so he would have to have multiple operations. “
“You can get cysts from where the mesh or silicone has gone in and if you look at the results the symmetry isn’t great still. They want to wait for Oliver’s eyesight to be really severely compromised before they do anything otherwise we have to wait til he’s nine. “
“I wouldn’t put him through the operation with the mesh or silicone unless his vision is completely compromised.”
The family now wants to take Oliver to see Dr Medel in Barcelona to see if he is suitable for his surgery, which is being hailed as “pioneering”. Since 2002, Dr Medel has been developing frontal flap surgery to correct eyelid ptosis in a minimally invasive manner, which means no visible incisions and no need for grafts or external materials to restore the eyelid’s normal position.
At a meeting of the American Academy of Ophthalmology, Dr Medel said he had operated on more than 400 cases and the frontal flap was his technique of choice for many children who are born with severe ptosis because of the advantages it offers.
“If ptosis is not treated within the first year, Dr Medel said it can prevent the correct development of vision and lead to chronic consequences, such as lazy eye. Dr Medel also says it is very important to correct the condition before the age of five to avoid damage or psycho-social problems, especially in the school environment, which can have an impact on the psychological development of affected children. “
“Another thing is that your brain forgets to use the other eye and then your vision is lost,” explained Mary. “ I just want to prevent all these awful secondary conditions that are guaranteed to happen if we wait until Oliver nine.” Mary said the surgery costs around £6,000 for one eye and she is now waiting for a Zoom consultation with Dr Medel.
To donate, you can visit bit.ly/3dvRGVx