But little Dominic Wight has been left covered in bright red birthmarks – that may never fade.
Legal assistant Meagan, 32, from Alberta, Canada, was only 32 weeks pregnant when she went into premature labour in February.
An ultrasound scan revealed a bright spot on Dominic’s liver, and medics told his parents he had an enlarged heart.
They performed an emergency C-section, and Dominic was rushed to neonatal intensive care.
Neurologists told Meagan and her husband Jarrod that their son was suffering two arteriovenous malformation (AVM), a rare tangle of abnormal arteries and veins that are prone to rupturing and bleeding out.
Dominic had an AVM in his liver, and another in his brain, which bled out causing a stroke.
Warned their son’s condition was critical, Meagan and Jarrod did their best to make the most of their time with him, taking photos, tucking him into bed and christening him,
They made the impossible decision to switch off Dominic’s life support, expecting him to fade away.
The neurologist told us he may never wake up, and if he did we could be dealing with cerebral palsy, mental deficits, blindness and deafness
Meagan Wight
But, they were shocked when the little fighter fought on.
He’s now a smiley four-month-old tot, his mum said.
He is covered in dozens of bright red spots, which his parents have been told are birthmarks, not linked to his other health problems.
“The first glimpse I had of him, he was blue and his skin was covered with spots, he wasn’t crying,” Meagan said.
“I thought the worst, but then he let out the weakest cry.”
As they rushed her son to intensive care, Meagan told her husband to stay with him.
“I dragged myself from my bed to a wheelchair, the spinal tap hadn’t even worn off,” she said.
“And I demanded a nurse take me to him.
“When I got there, I could hardly see him under all the wires and tapes.”
The next morning, Meagan checked out of hospital – against doctors’ orders.
“I still had hope that it was just preemie issues, but my world was about to fall apart,” she said.
It was then doctors dealt the couple a devastating blow.
The AVM in Dominic’s liver was putting a huge amount of pressure on his heart, and another in his brain had triggered a stroke.
Meagan said: “They told us that it had haemorrhaged and he had suffered a stroke.
“The brain damage was significant, basically he didn’t have a right temporal lobe below the mid-line anymore.
A RARE TANGLE OF BLOOD VESSELS THAT CAN BLEED OUT
An arteriovenous malformation is a tangle of abnormal and poorly formed blood vessels.
The vessels have a higher rate of bleeding than normal and can occur anywhere in the body.
Brain AVMs are of special concern because of the damage they cause when they bleed.
If a bleed occurs in the brain it can cause a stroke which can be potentially life-threatening.
They are very rare and occur in less than one per cent of the general population.
Cause:
It is not known why AVMs occur.
Brain AVMs are usually congenital, meaning someone is born with one, but they’re usually not hereditary.
People probably don’t inherit an AVM from their parents, and they probably won’t pass one on to their children.
They are thought to be caused when blood vessels form abnormally in the womb.
Symptoms:
Symptoms may vary depending on where the AVM is located:
- More than 50 percent of patients with an AVM have an intracranial bleed
- Among AVM patients, 20 percent to 25 percent have focal or generalized seizures
- Patients may have localised pain in the head due to increased blood flow around an AVM
- Fifteen percent may have difficulty with movement, speech and vision
The chance of a brain AVM bleeding is one per cent to three per cent per year.
Over 15 years, the total chance of an AVM bleeding into the brain – causing brain damage and stroke – is 25 percent.
Treatment:
Treatment depends on the type of AVM and where it is located.
A team of specialists will be assigned to a patient to find the best possible treatment options.
Common treatments include embolisation, to cut off the blood flow to the vessels, and surgery to remove it.
Source: The Stroke Association
“The neurologist told us he may never wake up, and if he did we could be dealing with cerebral palsy, mental deficits, blindness and deafness.”
Doctors warned the situation was bleak, and advised that the couple opt for palliative care for their son.
“I felt like all the air had been sucked out of the room,” Meagan added.
Ee lived through the NICU experience, we went from extreme grief when we thought he wouldn’t survive, to joy as he fought
Meagan Wight
“We talked about what would happen when he passed and made plans.
“All I could think was I can’t make these choices, I wanted to run away.
“We were expecting him to slowly fade away, but he didn’t. He kept fighting.”
Doctors, amazed at his progress, began to treat Dominic again, and he fought through three nights.
Biopsy results showed the spots on his skin are normal birthmarks, Meagan said.
Dominic has suffered some brain damage, as a result of his stroke, and doctors have warned he could suffer some degree of blindness.
The AVM in his liver has been removed, and he will have to undergo brain surgery at some stage to remove the AVM in his brain.
Meagan said: “We were in shock, firstly he was born almost eight weeks early.
“And secondly, all our scans appeared normal, we were not expecting a sick baby.
“Then as we lived through the NICU experience, we went from extreme grief when we thought he wouldn’t survive, to joy as he fought.”
Specialists have told the couple, the bright red spots covering Dominic are a separate health issue.
Meagan said her daughter now wants to put spots on all her dolls, and added that strangers think it’s chicken pox or measles.
“Most people are just curious and are usually respectful,” she said.
“But recently we had a man just look at him and say, ‘ewwww’.
“I was in shock, I didn’t even really know how to respond.”
She said she hopes her son’s spots will fade has he gets older, fearing he could be bullied at school.
“Given everything he has to deal with, I hope they just disappear and he can look like everyone else,” she added.
Now, Meagan is on a mission to raise awareness and inform others about life-threatening AVMs.
Many sufferers live from scan to scan, waiting to see if they need surgery or radiation.
“There has to be something that can be done to better benefit this condition,” Meagan said.
“The outpouring of love from our friends and family are what is helping us get through this situation.
“They only see the little fighter that fought back from the brink of death.
“He is very loved by our family and friends. We all affectionately call him Spot, like in 101 Dalmatians.”
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