Your son Eric was born with Aortic Stenosis, a narrowing of the aortic valve in the heart, which in turn restricts blood flow through the valve. How was this discovered?
It was not evident until the umbilical cord was cut. In Eric’s case the valve was completely closed and he was immediately critical. We were flown to Children’s Hospital where he underwent emergency surgery. Surgeons went into his heart via the artery in his neck. They completed a balloon valvuloplasty where they inserted a balloon into the closed valve and enlarged the balloon to open the valve, although to about 50% of normal. This bought us some time until he was older. It was an incredibly dangerous operation because he was only two days old. Two months later they repeated the procedure because the valve began to narrow again. The second operation bought us some time until he was one year old and big enough to lower the risk of the open heart surgery.
What complications occurred during the surgery and why?
Eric went into cardiac arrest on three occasions immediately after the surgery – once while we were at his bedside. At some point post-surgery, he suffered a massive stroke that paralyzed the left side of his body so he went from a walking, active boy to being unable to sit on his own. He has regained some abilities: he is walking again and he has limited movement of his right side, but we are told he will always have limitations with that side of his body.
In this issue of Seaside, we are focusing on “heart health” and other topics of health and wellness. What are some of your favourite activities to do with your son?
His heart is now working great so he is not restricted on his activities, although the stroke has limited his ability to walk and climb. He loves to play like any typical two-year-old so we love taking him to the park. Eric’s sisters are a bundle of energy and the three of them are playing all day every day.
At just two years old, do you think Eric understands the depth of what he’s going through right now, and what is to come? If so, what sort of questions does he ask and how do you answer them, especially the tough ones?
Eric’s speech was also affected by the stroke. He understands what we are saying but he has trouble communicating. We are all learning sign language and he is picking that up quickly. I don’t think he has any recollection of the surgery but the next time he has to go, he will be school age, and I am sure he will have many questions then.
In addition to owning your own busy garden and landscaping business, Garden City Tree & Landscape, you also have two beautiful four-year-old twin girls. Life at the Eaton home must be super busy! Describe a day in the life of your family for our readers.
Busy is correct, but no more so than any other family with children. We are typically up at 6 a.m. seven days a week. Mornings seem to be the toughest, probably because my partner Rachel and I miss our sleep. I am off to work by 7:30 a.m. and hopefully back by 6 p.m., so it is a lot for Rachel each day. I have so much appreciation for how much she does for our family. Once home I try to take the load off by helping with whatever I can. By 7 p.m. it’s bedtime for the children, which gives Rachel and I some downtime together. It is tiring but so rewarding.
What community outreach organizations and programs have been available to help you and your family through this process? Has there also been financial aid available?
There have been many; if I miss anyone below I truly apologize.
The BC Family Residency program has assisted with finding us accommodation during the many extended trips to Vancouver.
Variety – The Children’s Charity helps to fund the Easter Seal House in Vancouver where we usually stay.
BC Ferries covers our ferry trip to the mainland when we have to go for surgery.
Help Fill A Dream Foundation provided funds to help with the extra expense of having to live in Vancouver out of a suitcase for weeks at a time.
Queen Alexander Centre provides the orthotics that Eric now requires to walk properly.
Neuromotion Physiotherapy has been amazing. They really work hard to help him recover from his stroke.
The Brain Injury program through VIHA has helped us handle the help Eric requires.
Surgical treatment has greatly improved the outlook for people who have a severe stenosis and surgery to widen or to replace the valve has a very good success rate. What is the long-term prognosis for Eric?
Eric will have to undergo several more heart surgeries until he stops growing, because the replacement valve does not grow with him. Right now and because of his size, those surgeries are open heart, which increases the risk and recovery time. Technology exists for the valve replacement to be completed via an artery, thus avoiding open heart surgery, but that technology does not currently exist for young children. We hopefully have two to three years before he requires another surgery and each day brings new technology forward. We hope that at some point, open heart will no longer be required.
With all the unrest that goes on around us and the world, Eric is truly an inspiration for us all. Do you see life differently now?
Before Eric I took my children’s health for granted. I now appreciate how fortunate I am that my twin girls were born healthy and that Eric is doing fine. To sum it up, not long ago I was sitting with my family as we waited to have a routine heart appointment for Eric at the local hospital. In the waiting room was a six-year-old girl who was bald. My girls thought she was a baby because of the loss of hair. She was such a beautiful little girl. I was talking with her mother, who told me her daughter was terminal and did not have much longer to live. It hit me so hard I immediately grabbed my children and I held them so tight and cried. It has been tough at times, but so many parents are dealing with much more than I can imagine. Life is great and I am one proud and happy dad.
Photo by www.nuttycake.com.
