By Liana Jacob
THIS PROUD MUM is showing off her miracle baby boy who suffered a stroke when he was born and defied the neurologist who warned her that he may never wake up but has been left with bright red spots across his entire body which may NEVER vanish.
Legal assistant, Meagan Wight (32), from Alberta, Canada, was only 32-weeks pregnant in February this year when she went into preterm labour, as her due date was in April, and after an ultrasound scan was taken doctors found a bright spot on her baby, Dominic’s, liver and told her that his heart was enlarged.
Her husband, Jarrod, frantically met her in hospital, and she was wheeled in the delivery room and had to have an emergency c-section. At the first glance, she saw Dominic looked blue and his skin was covered in spots.
The next day, doctors had told them that their son’s liver had an arteriovenous malformation (AVM), a tangle of abnormal and poorly formed arteries and veins; they have a higher rate of bleeding than normal vessels.
Doctors told them that the AVM in his liver was causing his heart to work overtime, and this resulted in high output cardiac failure. They were later told that he had an AVM in his right temporal lobe. It had haemorrhaged, and he suffered a stroke which prompted the neurologist to inform the distraught couple could that their baby son might not survive. He was conscious but was placed on significant support measures.
Despite Dominic’s critical condition, Meagan and Jerrod did their best to make the most of his life at the time; taking pictures, christened him, tucked him in bed. When they agreed with the medic’s advice for Dominic’s life support to be switched off, they expected him to fade away, but to their delight he kept fighting and is now a smiley four-month-old baby. The family do not believe the spots Dominic has on his body are linked to his other health problems.
“My son was delivered by emergency c-section, the first glimpse I had of him was he was blue, and his skin was covered with spots, he wasn’t crying,” she said.
“I thought the worst, but then he let out the weakest cry. I saw him only out of the corner of my eye as they rushed him to the neonatal intensive care unit, I told my husband to stay with him and that I would be fine.
“I dragged myself from my bed to a wheelchair; the spinal tap hadn’t even worn off, and I demanded a nurse take me to him.
“When I got there, I could hardly see him under all the wires and tapes. They had no clue what was going on, so every possible machine was hooked up.
“The next morning, I checked out of hospital against the doctors’ orders. I still had hope that it was just preemie issues, but my world was about to fall apart.
“We were told immediately that his liver had an AVM, which was causing high output cardiac failure. He was severely jaundiced and there was fluid around his lungs.
“This was causing his heart to work overtime, causing it to go into high output cardiac failure. Our neonatologist told us that he did have an AVM in his right temporal lobe of the brain.
“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 midline anymore.
“The neurologist told us that he may never wake up and if he did we could be dealing with cerebral palsy, mental deficits, blindness, deafness etc. With everything else going on with his body, it wasn’t good.
“At that point they recommended palliative care, I felt like all the air had been sucked out of the room. We talked about what would happen when he passed and made plans.
“All I could think was I cannot make these choices; I wanted to run away. We decided to take photos, have him baptised and see our son onward peacefully.
“We pulled all the plugs and we were expecting him to slowly fade away, but he didn’t. He kept fighting. Now the neonatologist recommended that we give him some support and see where he takes us.
“He fought hard and pushed through for three nights with very little support; either my husband or I stayed with him twenty-four-hours-a-day.
“We had biopsies on his skin and found that his spots are just normal birthmarks; just a lot more than any of our doctors had seen before, so he also went on Propanol to help stop them growing.”
Despite surviving the haemorrhage and stroke, Dominic then suffered brain damage from the stroke which doctors warned will not get better and he may suffer from a varying degree of blindness from the damage.
“His liver AVM has already been surgically embolised. He will need brain surgery sometime in the future to deal with the AVM in his brain,” Meagan said.
“We were in shock, firstly because he was born almost eight-weeks early, and secondly because 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 he wasn’t going to survive, to joy as he fought.
“From what we have been told the spots are a completely separate issue from his AVMs and stroke, it was like winning a bad lottery three times.
“Since Dominic is a baby he doesn’t understand about embracing his spots, but I am trying to help my daughter understand.
“She wants to put spots on all her dolls and has started to rip apart stickers and place them on her dolls faces.
“We have lots of people think it’s chicken pox or measles and trying to explain that no it’s just birthmarks has been interesting.
“Most people are just curious and are usually respectful, I actually love the questions from children, because they only see cute first and then ask about his spots.
“But recently we had a gentleman just look at him and say ‘eww’, I was in shock over it, I didn’t even really know how to respond.
“I hope for Dominic’s sake that as he ages he loses his spots, I know how awful adolescence can be, and I would hate for him to be bullied.
“I know his sister would protect him, but given everything else he has to deal with, I hope they disappear and he can look like everyone else.”
Now that she has experienced the worst, Meagan is on a mission to inform others about the conditions her son has faced in the first four-months of his life by sharing his pictures on Instagram.
“I want to try to raise awareness of paediatric strokes and AVMs, there aren’t a lot of information on either condition and both are life altering,” she said.
“I have found support through a vascular malformations group on Facebook, but these people like my son, live in a world with more questions than answers.
“They live constantly waiting for the next scan to see if they need surgery or radiation. There has to be something that can be done to better benefit this condition.
“I worry about him more with regards to the damage from the stroke, what will school be like, will other children mock him if he can’t walk normally? But Hopefully by the time he is in school his spots will have disappeared.”
“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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