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This is Jacob's story
1 in 100.
That's the statistic that every parent needs to know about Congenital Heart Defects (CHDs). Sometimes though, a number can be so abstract. It carries little meaning. Why? Because we look at that and think 99. My baby will be one of those 99.
This is Jacob. He was born a little over one year ago. He definitely made a splash in our lives. I remember talking to my friend Sara (Jacob's mom) prior to her prenatal class the previous day. Everything was going great. She was 36 weeks along and doing well. We had been joking about a crazy dream I had about her birth the week prior. She was optimistic but had been letting her friends and care providers know that she had this feeling he was coming early. Little did we all know, she was right. I typed a goodnight to Sara. Jacob came the next morning.
The Diagnosis
Jacob's birth story is incredible, in itself, but that's a story that I will leave for Sara to tell.
One thing is for sure, he came early for a reason. He was a fighter. He was so strong, so beautiful, so tiny. And he needed help. Help that he couldn't get inside his wonderful mommy. Help that he would soon get, from a lot of caring, talented people.
Here is the story of his diagnosis, as told in Sara's words:
Photo credit: www.kadripress.com
"Jacob was a week old, January 17, 2014. It was early morning and we were preparing to leave the hospital after spending the night so Jacob could have phototherapy for his jaundice. Over the course of our stay, the nurses had been coming in quite regularly and checking his oxygen saturation levels (at the time the significance of this meant nothing to me).
I remember at one point during the morning Jacob's nurse, Norma Jean, had come in every 5-10 minutes with different pulse oximeters, hot cloths and towels to warm up his hands and feet, testing him again and again and me thinking about how annoying she was being. I believe it was about 10:30 when Justin came to get me and the resident doctor came in with the discharge papers.
It was at this time that Norma Jean came in and said she and the night nurse weren't able to get a sats reading higher than 86. The resident doctor said he'd be right back and brought in the pediatrician in call, Dr. Okano. He was surprised that his sats were so low and said that we were lucky to have BC Childrens cardiac team in town doing their rural clinic. He went and spoke to Dr. Human (the cardiologist) and he and his team (I believe there were about 7 or 8 people there for training) came into our room with a plethora of machines. He was given an ECG and an echocardiogram. They left the room for a while and then came back, sat Justin and I down and broke the news to us with pictures of a regular heart and pictures of what Jacob's heart looked like. It was like a fog had come over me.
Unable to process it all I remember asking if it was serious and if he'd require surgery some day. Dr. Human said he'd require surgery within the week and that we'd be flying to Vancouver that day.
Jacob was diagnosed with supracardiac, obstructed Total Anomolous Pulmonary Venous Connection (or Return) with an Atrial Septal Defect (which was what was keeping him alive, letting in enough oxygen rich blood into his left atrium). Around 3:00 that afternoon the air ambulance team showed up and packed us up to go. I said goodbye to my husband and children (with whom I'd only spent two nights away from in their whole lives) not knowing what was going to happen. We were flown to Vancouver, transported by ambulance to B.C. Children's Hospital and brought to the PICU.
In a flurry of emotions I watched as the nurses and doctors took over and hooked Jacob up to a million machines. We spent the night in the PICU and were transferred up to 3M in the morning."
The Surgery
"Justin (Sara's husband) and I handed our eleven day old baby to an OR nurse, not 100% sure we'd be taking him home with us.
8 hours later we were called into the consultation room and told his surgery went wonderfully. An hour after that, Jacob went into pulmonary hypertension and his surgeon had to do CPR to bring him back. His sternum was reopened, and left open for four days and he was intubated for a week.
That night was the first (of many) that Jacob spent without me as he began his slow road to recovery. His surgeon, Dr. Campbell, saved his life that day and we will forever be grateful for the blessings we have received."
The Prognosis
Over a year later, Jacob is amazing everyone, even his doctors. Although he will require continued monitoring via routine trips to cardiac clinics as he continues to grow, Jacob's outlook for a healthy childhood and adult life is very good.
But his fight is not over. As Jacob grows into an adult, he may require further medical support and care. Currently, Canada lacks the resources needed to adequeately provide care to adults living with CHD.
CHD Facts and Issues*
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Congenital heart disease (CHD) is the world’s leading birth defect. About 1 in 80-100 Canadian children are born with CHD. In the past, few made it past their teens. Now, approximately 95% make it to adulthood – resulting in a growing population of young adults who require life-long cardiac care.
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There are an estimated 257,000 Canadians with congenital heart disease.
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Of the 257,000 Canadians with CHD, two-thirds are adults. At least half face the prospect of complications, multiple surgeries, and/or premature/sudden death.
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There are far fewer resources allocated for the care of adult CHD patients than other cardiac patients. As a result, wait times for clinical visits and surgical intervention are much longer than for other cardiac patients – leading to increased anxiety, added risk and even death.
*Source: www.cchaforlife.org
What we can do together to help
February 7 - 14th 2015 is CHD Awareness Week.
Join Nuggles! in spreading awareness about this all-too-common, yet little known disease. Volunteer, donate, or share facts with your family and friends in person and via social media.
Follow us on Facebook to share our fact filled posts, giveaways, and specials with your friends during this week-long campaign.
Shop with us. During this week, Nuggles is offering you 5% off all orders, and in addition is donating 5% of the proceeds of these orders to the Canadian Congenital Heart Alliance (www.cchaforlife.org) a non-profit organization that provides support and resources to Canadians of all ages living with CHD. USE CODE "5FORCHD" at checkout to participate!
Donate to or volunteer with your local or national non-profit organizations or hospitals that provide invaluable support, resources, and life-saving medical interventions.
Use code "5FORCHD" at checkout to get
5% off and Nuggles will give 5% to the
Canadian Congenital Heart Alliance.
Donate directly to the Canadian Congenital
Heart Aliiance non-profit organization.
