Can you imagine how it feels to hand over your baby to a team of health care professionals? If your child has been diagnosed with a congenital heart disease – imagining is just the beginning. As families cope with the news that their child has a heart condition, Eastern Health’s Janeway Cardiology Team is there to help them through the journey, one day and one step at a time.
Eastern Health’s Janeway Cardiology Team frequently deals with families whose children have been diagnosed with congenital heart disease, as well as acquired heart disease. The team provides consultation and care to inpatients at the Janeway Children’s Health and Rehabilitation Centre, but also offers outpatient services to children province-wide. The program also follows adults who have a congenital heart disease, who are seen by a pediatric cardiologist and an adult cardiologist to ensure proper follow up and treatment are administered.
Dr. Christina Templeton has been a pediatric cardiologist at the Janeway for over 12 years. She has had a lot of experience speaking with families who have been blindsided by the news that their child has a heart condition.
“Whether you find out while pregnant, at delivery or when your child is six months – you will still be overcome by the news,” said Dr. Templeton. “On top of that stress, there is a huge amount of information these families need to take in and you may need to share information with them a number times before they truly grasp what is happening. We make sure information is readily available throughout the child’s journey and try to be there to answer all of their questions.”
Recently, I had the privilege of speaking with four moms who know all too well how it feels to have a child with a heart condition. Each of these mothers wanted to share their story and raise awareness about congenital heart disease and the important work done by the Janeway Cardiology Team.
Krista’s daughter Carly, 2, was diagnosed with Tetralogy of Fallot when she was just one day old. Carly received open heart surgery at the IWK Health Centre in Halifax during April 2012, when she was just four months old.
“You don’t dream in your worst nightmare of something like this happening to you or your child,” explained Krista. “All I could think was that I was handing over my tiny baby not knowing if I was getting her back. Dr. Templeton broke the news to us and was great – she took us into her office and provided us with all the information we needed.”
Once the open heart surgery was completed, Carly started her journey to wellness. While the heart issue was addressed, Carly, like many other children who have received heart surgery needed care and support so that she would develop into a healthy little girl. She was followed by a physiotherapist, pediatrician and a dietician from the Provincial Perinatal Program to ensure she made a full recovery.
Carly is now doing fabulous. Her heart defect was fixed and she has developed wonderfully. She will still need to be monitored once a year by the Janeway Cardiology Program for the rest of her life.
“She’s an energetic, happy little girl with a repaired heart. The quote ‘some people never get to meet their hero, I gave birth to mine’ is the best way I can explain what she means to me. Carly is my hero.
“The Janeway Cardiology Team and Perinatal Team were always fabulous. Dr. Templeton is the most inspirational person I have ever met. The team cares for Carly like she is their own…so thankful.”
Lisa’s son Jacob has Double Inlet Left Ventricle and a Complete Heart Block, which means the right side of his heart is too small to function. Simply put, Jacob was born with half-a-heart. To Lisa’s knowledge, he is the only person living with this condition in Newfoundland and Labrador.
Unlike Krista, Lisa’s son was diagnosed when she was 21 weeks pregnant, but having that extra time to process didn’t make it any easier.
“Knowing he would be taken from me as soon as he was born to have a surgery that 20 per cent of babies die from and that I would not be able to hold him for a long time was very difficult. I became depressed – my pregnancy was ruined as I spent all my time worrying.”
Due to the severity of Jacob’s condition, Lisa gave birth to him at Mount Sinai Hospital in Toronto, so he could be immediately admitted to Sick Kids for treatment. Jacob is now 10 months old and has had three open heart surgeries – one when he was five days old, one when he was six days old and one when he was five months old. He now has a permanent pace maker and uses a feeding tube.
Jacob has been recovering from his surgeries wonderfully, and while his condition is not curable, he is doing great.
“I have learned to cherish every single moment day by day,” Lisa said. “Jacob helps me push back the fear I have about his condition and focus on this miracle baby smiling in front of me. You would never know what he has been through by looking at him. He is so complex. The nurses at Sick Kids use to call him super baby because he has recovered so well.”
Jacob is closely monitored by the Janeway Cardiology Program. He receives an echocardiogram monthly to ensure there are no changes with his condition. He is also closely followed by an occupation therapist and a dietician. Lisa is so grateful for the care Jacob has been provided at the Janeway.
“Jacob’s first hospital stay was two months long, during which all decisions for his care were made by a team of specialists in Toronto,” explained Lisa.
“When we came home, I didn’t have much confidence when it came to making decisions for Jake on my own; I always wanted a second or third opinion. I credit Dr. Templeton with giving me the ability to see that I was Jacob’s mom, not the hospital, doctors or nurses. She really gave me the confidence and ability to trust my own judgement when it came to Jake. Now I’m very decisive and unafraid to speak my mind.”
Danielle was 28 weeks pregnant when she found out that her baby girl, Sara, had hypoplastic right heart, double outlet right ventricle, pulmonary stenosis, ventricular septal defect and transposition of the great vessels. Once Sara was born, Danielle was told that her baby girl also had an aneurism behind her heart.
“I was overwhelmed… it was a complete shock. I really had no idea what to expect and was so frightened for my baby,” said Danielle.
As Danielle is from Main Brook, a town just outside of St. Anthony on the Northern Peninsula, she needed to move to St. John’s to have Sara so that they both would have access to the specialized care they needed. She made the move in June 2013 and had Sara in September. In November, Sara received her first open heart surgery at Sick Kids in Toronto. After the surgery, she went into cardiac arrest for 35 minutes and was on life support for three days. Sara received her second stage surgery on December 17, 2013, and returned to St. John’s on February 7, 2014.
“We were at Sick Kids for 97 days and are over the moon to be back from Toronto,” Danielle said with relief. “Sara is doing amazing…happy and alert. She is being monitored at the Janeway, but our hope is to finally bring her home by Easter.”
Sara will require regular monitoring by the Janeway Cardiology Team for the rest of her life. To accommodate patients like Sara, the program offers travelling clinical services to Gander, Grand Falls-Windsor, Corner Brook, St. Anthony and Happy Valley-Goose Bay. These travelling clinics will provide patients living with a heart condition to be receive monitoring and care from the Janeway Cardiology Team closer to their homes.
“The Janeway Cardiology Program has been fantastic, I couldn’t ask for better,” said Danielle. “We will use the travelling clinics when we return home. We are so thankful to have that option; it will definitely make things easier.”
When Kelly’s son, Jonathan, was just one day old, he was air lifted out of Western Memorial Hospital in Corner Brook to the Janeway Children’s Health and Rehabilitation Centre in St. John’s. Jonathan had transposition of the great vessels and needed surgery at the IWK Health Centre in Halifax.
Jonathan’s surgery went well and his heart was repaired. Kelly thought everything was fine only to be blindsided again when Jonathan was nine years old. He was diagnosed with an enlarged aorta and underwent another surgery to replace his aortic valve with a mechanical valve.
“They discovered that Jonathan had Marfan syndrome – a hereditary condition that has only affected his heart as of yet, but can affect different parts of his body,” explained Kelly. “We had no idea this was in our family, but after some testing it was discovered that Jonathan’s father, Joey, also had this condition. If it wasn’t for Jonathan, Joey would not have known anything was wrong with him. Jonathan saved his life.”
Jonathan is now 16 and is doing well, but Kelly still worries about him.
“It gets easier as time goes by, but sometimes I feel like I have more to worry about now that he is a teenager, as I am coming to terms that I cannot always be there for him,” she said. “Our focus now is to teach him how to look after himself the way we have learned how to over the years.”
Jonathan is seen twice a year by the Janeway Cardiology Team, once from Corner Brook and once in St. John’s.
Kelly is very thankful for the travelling clinics and the team:
“The travelling clinics help us out a lot. It’s wonderful idea. The Janeway Cardiology Team is very accommodating as they work around Jonathan’s schedule so that he isn’t missing school. I can also call them anytime of the day for advice or to ask questions – just great communication. I don’t know what I will do when they retire! Jonathan feels the same way; it is one doctor’s appointment that he loves to go to!”
‘Heart moms’ Find Extra Support in Each Other
On February 14, 2014, Janeway Cardiology Program held its annual Open House in recognition of Heart Month (February) and Congenital Heart Awareness Week (February 10-14, 2014). The purpose of this event is to raise awareness about heart conditions in children, as well as provide an opportunity for ‘heart’ families and staff to socialize.
Despite the bad weather that day, families and staff ventured out to show their support for children impacted by heart disease and for the work done by the program.
I got to catch up with Krista, Lisa and Danielle and their families at the Open House – allowing me to witness firsthand the bond that their families share with the Janeway cardiology team. But it was also obvious that they shared a bond with each other. This is because they have all become acquainted through a support group that Krista administrates.
“When I was told Carly had a congenital heart disorder and needed open heart surgery I felt very scared and alone,” said Krista. “Dr. Templeton asked if I wanted to speak with another heart family, as many parents find that helpful. I did and it helped. They were able to provide advice that you may not get from a physician, like to bring button up sleepers instead of zip up as your child will be hooked up to medical equipment.”
When Carly was on the mend, Dr. Templeton asked Krista if she would be interested in starting a support group for families who have children with a heart condition. Krista, who is also a social worker, jumped at the chance! She started a Facebook group called NL Heart Support Group. This group provides families with a place to ask questions, receive information, stay connected and support each other. Members of the group also regularly meet for coffee or go out for supper to catch up.
Lisa has been a member of the support group since Krista launched it:
“The group has made an enormous difference in how I cope – we are constantly talking and sharing news. Talking to other moms is an absolute anchor. No one understands how hard it can be until they have been through it themselves. The relationships I have built are phenomenal – I cherish them.”
Danielle became a member of the group while she was pregnant, and agrees that it is great support: “It is helpful to share stories, and know that other people are going through the same thing. Our situations are different, but we have the same stress and worry.”
While Kelly’s son is now 16, she too has joined the group and thinks it is a wonderful initiative.
“I wish I had a resource like this when Jonathan was a baby,” she said. “I did meet another heart family when Jonathan was a baby that lived nearby, and we have become best friends over the years. It helped to have someone who knew what you’re going through. This group is wonderful, especially to help parents who are just starting out. ”
Krista encourages anyone who has a child or family member dealing with heart disease to join the group and to listen to other families’ stories and to share their own. ■
This story was written by Jackie O’Brien, a communications specialist with Corporate Communications at Eastern Health.