Our Newborn Son Suffered a Stroke

I had always thought that strokes were something that only happened to the elderly; was I ever wrong.

Baby August was born October 21, 2009, pink and healthy, after a lengthy but uneventful labour with a midwife at a downtown hospital. He was born tongue-tied, making it difficult for him to latch initially, but, after a simple procedure the next day, he was breastfeeding.

However, on Augie's third day of life, he was sleepy and lethargic. He wouldn't wake up after a five-hour sleep, even after we tried to rouse him. When we finally did wake him, his eyes were glued to the left, his face was pale, and he was gasping for breath.

Terrified, we immediately bundled him into the car and raced him to the local ER, where medical staff descended on him immediately, tearing off his clothes, applying oxygen masks and cuffs and hooking him up to various machines. I stood back, in complete shock, watching this event unfold in front of me as though I was watching through a long black tunnel.

Augie's initial diagnosis was mild dehydration, and he quickly stabilized. However, that evening, the on-call pediatrician noticed that August's left leg was trembling slightly.

We didn't understand the gravity of the situation then, but these almost imperceptible shakes were serious enough to warrant our baby an immediate transfer to SickKids. Overnight, he had had another two trembling episodes on his left side, which we were informed were also seizures. Not good.

Augie arrived at SickKids that afternoon. There, a team of neurologists examined him and an MRI was performed. We learned late that night that Augie had likely suffered a stroke in the right side of his visual and spatial processing lobes.

The attending doctor was obviously rushed, but she emphasized that there was “a lot of hope for Augie”, despite his grim diagnosis. How could there be hope for an infant who had just suffered a stroke? How did this happen? Strokes were for old people, I immediately thought, devastated.

Not so. The second largest group of stroke victims (after the elderly) is neonates, from in-utero up to 28 days of life. One in 4000 neonates suffer stroke. The causes of pediatric stroke are varied and complex; some stem from blood disorders, others from heart issues. Neonatal stroke can also be caused by ‘birth trauma' or dehydration. Often, there just isn't a definitive cause.

Augie confounded the Stroke Team at Sickkids during his three weeks there, as his presentation did not conform to any typical pattern. However, after endless tests and a follow up MRI, Augie's stroke was diagnosed as a ‘probable CSVT', or cerebral sinovenous thrombosis, a rare but potentially less destructive type of stroke, affecting 0.67 in 100,000 .

The Stroke Team still doesn't know what caused his condition; his mild dehydration was not thought to be severe enough to bring on a stroke. We must accept that the cause of his stroke may remain a mystery forever.

During our three weeks at SickKids, my partner and I tried unsuccessfully to envision what had happened in Augie's tiny brain. He was so small, so fragile; it was impossible for us to imagine him having had a stroke. We just couldn't make the connection between the tiny, precious newborn in front of us, covered in wires and overshadowed by machines, and the blown up MRI images of Augie's damaged brain spread out before us on the doctor's computer. We tried to remain optimistic.

After being discharged, Augie started various therapies: visual therapy, physiotherapy, occupational therapy, infant development therapy, and osteopathy. Now, two and a half years later, three teams at SickKids continue to track Augie: Stroke, Neo-natal, and Neuro Ophthalmology. We have been astounded and pleased with the level of care he continues to receive; no aspect of his development is being left to chance.

Nowadays, I try to tell as many people as I can about our baby's stroke. I feel a personal responsibility to get the word out about pediatric stroke, to be a witness to his experience, in order to let the world know that babies can and do have strokes, something I hadn't known before it happened to my baby.

No one who meets Augie would ever guess that he's suffered a neonatal stroke. Everyone asks the same two questions: “Why did he have a stroke?” and “Will he be OK?” Two and a half years later, I still can't answer either of these questions conclusively, although the answer to the latter question appears to be a resounding ‘yes'.

No one knows what the future holds for his or her child, but in our case, this lack of knowledge is particularly unsettling. Augie has an increased chance of developing epilepsy and headaches or suffering another CSVT as a result of this stroke. His cognitive abilities may also be impaired, but those are things that will be only revealed in time.

Today, Augie is a sunny toddler who is very curious about the world around him. He talks non-stop and runs everywhere; remarkably, he doesn't display any obvious muscle stiffness or floppiness, and his vision appears fine. His team of therapists has shrunk down to one speech and language therapist, and his regular clinical visits to SickKids. Everyone is very pleased with his cognitive and physical development so far. On the minus side, he has suffered three fever related seizures, and takes an anti-convulsive medication daily. His last aggressive seizure was in December; thankfully, the anti-convulsive drug appears to be working so far.

As for me, I try not to dwell in the negative, instead focusing on how much progress he has made and how incredibly well he is doing. It's an ongoing challenge; I mask my continuing worry and try not to let him sense my fear. But, the future does look bright for Augie. Everyday is a new day to marvel at his determination and strength. He's my hero, and I love him to bits.

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Gabrielle's Ride will give all members of the community, from elite cyclists to families and children, the opportunity to ride in support of the thousands of children in Canada who live with the affects of congenital heart disease and pediatric stroke.


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Gabrielle's Ride is a charity cycle that was inspired by the life of Gabrielle Ide Cinanni and will take place annually in Oakville.


 

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