Ellie Wellman-Smith, 20, said when Harry, now one, was born he had such a large growth on his shoulder, prompting fears her son had a second head.
But after surgery to remove the fluid-filled growth, Harry is now a healthy toddler.
Ms Wellman-Smith said she is glad she chose not to have routine pregnancy scans, which could have led doctors to offer her a termination.
Harry Barron-Edgley, now one, was born with a huge fluid-filled lump on his shoulder
When Harry Barron-Edgley was born he had a lymphatic malformation – a fluid-filled lump just under the skin.
Ms Wellman-Smith said: ‘Lymphatic malformations can sometimes indicate lots of other problems including chromosomal abnormalities. I probably would have been told that termination was an option.
‘As it is, Harry is a lively, wonderful, healthy child. He can eat, he can play, he can mess around with his brother and enjoy life.’
Single parent Ms Wellman-Smith, a former financial services advisor, was initially shocked when Harry was born with the large growth after a 15-hour labour.
She said: ‘I said aloud what I thought – it looked just like a second head.
When he was two months old, Harry had surgery to remove the growth and he is now a healthy one-year-old
Harry’s mother, Ellie Wellman-Smith, 20, says that when Harry was born she initially thought he had two heads
Ms Wellman-Smith says she chose not to have any pregnancy scans and that she is now pleased she made this decision as she fears she would have been advised to terminate the pregnancy
‘I was worried it was some kind of cancer. If you see a cyst or a lump on anyone’s body, that’s what naturally comes to mind.
‘After I’d gone through the surprise, I had an instinct that Harry would be alright. I didn’t panic – I knew he would be fine.’
She was able to take Harry home for three weeks as doctors decided on the best course of action.
LYMPHATIC MALFORMATION – A LUMP CONTAINING CLEAR FLUID
A lymphatic malformation is an area in the body containing clear fluid.
It appears as a lump just under the skin, often in the neck or armpit.
It occurs when the lymph vessel fails to form correctly during the early weeks of pregnancy.
Most do not need treatment other than careful cleaning to prevent infection.
However, they might need treatment if they interfere with breathing or feeding or if they are large and restrict movement.
There are a number of different treatment options including surgery.
Source: Great Ormond Street Children’s Hospital
A specialist surgeon at Birmingham Children’s Hospital eventually removed the huge cyst in a series of operations when Harry was eight weeks old.
Ms Wellman-Smith, from Corby, in Northamptonshire, said: ‘It was impossible to get t-shirts over him, and his head would always slump forward when he was sitting upright because the cyst was too heavy.
‘At first we were told that Harry could have injections which would stabilise the growth, and it would become less noticeable as he grew up.
‘I was devastated. I worried about bullying at school and how he would cope with his first nights out in town as a teenager – all the day-to-day challenges he would face.
‘The surgery was risky. There was a 30 per cent chance of damage to a nerve which controls Harry’s shoulder. But I was determined to do the right thing by him.’
Harry’s wound became infected following the procedure and he required four more operations during a month-long hospital stay.
Ms Wellman-Smith, who also has a two-year-old son, Bailey, was finally able to take Harry home when he was three months old.
She said: ‘It’s been quite a journey. When you’re caring for a baby with health problems your whole life changes. The things you worried about in your old life seem completely ridiculous.
Ms Wellman-Smith said: ‘Harry is a lively, wonderful, healthy child. He can eat, he can play, he can mess around with his brother and enjoy life’
Since having the lump removed, Harry has restricted movement in his shoulder and this is being investigated
Ms Wellman-Smith said that she was worried Harry might have cancer when she saw the lump and that she was relieved to find out this was not the case. Harry is pictured after his operation
‘I chose not to have a 12 week scan when I was pregnant because it didn’t matter to me whether Harry had any disabilities or not, and I’m really glad I didn’t change my mind.
‘I can imagine other families of children with lymphatic malformations going through with the scan and being given a list of all the serious health problems that it might indicate, and thinking that the risk to the child’s quality of life was too great.
‘It’s easy to see how the temptation would be to terminate, and try again for a healthy baby.’
Ms Wellman-Smith said: ‘Harry’s hilarious. He’s the naughtiest one-year-old you’ll ever meet. He copies his older brother in all his cheeky behaviour.’ Image shows the cyst being prepared for surgery
After the cyst was removed (pictured) Harry developed an infection and had to have four more operations
Harry now follows a special diet to regulate lymphatic fluid in his body and experiences some mobility problems in his right shoulder which are currently being investigated.
Ms Wellman-Smith marked her son’s first birthday on May 2 with a party at which she asked friends and supporters to make a donation to the Birmingham Children’s Hospital.
She said: ‘Harry’s hilarious. He’s the naughtiest one-year-old you’ll ever meet. He copies his older brother in all his cheeky behaviour.
‘I’m so glad he’s with us.’
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