Facts

1/4000 babies will suffer a stroke.

1/8300 children will have a stroke.

The results of a stroke in infants and children ranges; including weakness on affected side, paralysis, fine motor delays, gross motor delays, speech and language difficulties, emotional issues, sensory problems, swallowing difficulties, seizure disorders and balance difficulties.

Therapy is time consuming and on-going. Some therapies Averie is involved in, include Physiotherapy, Occupational therapy and MEDEK Physiotherapy. She currently uses two hand splints; the Benik and the McKie. Most children require a leg brace at some time, known commonly as an AFO.

Strokes are fatal in 20-40 percent of paediatric sufferers.

In 1/3 infants a cause is never found. In 1/10 children the cause is never found.

There is little research concerning paediatric stroke, it's causes, treatments and prevention. Currently the Hospital for Sick Children is leading efforts in Canada in these areas. There is a great need for awareness. I have heard too many times, "I did not know it was possible for an infant to have a stroke".

I am telling all of you who are reading this, that it IS possible. It DID happen to my daughter and I hope one day it may never happen to other children or could possibly be prevented.

Cry Baby

I was lying on pads, on the floor of a fairly dark hospital room, trying to adjust the cords attached to my baby's chest. Pulling them as far as they could reach, I wanted to cuddle with her. She needed to nurse, I needed to sleep. Neither of us were going to get our way tonight. We were waiting for an MRI in the morning and Averie wasn't allowed to eat. A three week old baby was not able to eat, for 12 hours. Those cries were horrible, but somewhat welcomed. Only because I was grateful she could cry; would cry. Only a week earlier she was transferred from a minimal stimulation room in the Neonatal Intensive Care Unit at SickKid's Hospital. She was in a Phenobarbital induced coma, her levels of the anti-seizure medication reaching three times what was considered "therapeutic". I was grateful she could now open her eyes, move and cry.

This was my reality for six weeks. Things I never thought of when having a baby. Things I didn't know happened. I was sheltered from tragedy. I am no longer.

This blog is somewhat therapeutic for me, but I was inspired by the lack of support for parents struggling with this diagnosis. I am here to simply share my experiences, feelings and offer some support for other parents who have gone or are going through what we did. I say that as if it is over, it's not. We will be going through this lifelong, so will our daughter. I always welcome support from others who have similar experiences and I hope this forum can allow for open and supportive discussion on paediatric strokes and the journey thereafter of the babies, parents, families and health care team.