IWK PATIENT STORIES
RILEY & EMMA Doyle
GLACE BAY, CAPE BRETON
Imagine if you had not one, but two, very sick little girls.
Riley Doyle was only three-years-old when she and her mom, Shauna, travelled from Cape Breton to Halifax for a month of testing at the IWK. Riley was diagnosed with a rare metabolic disease affecting her kidneys. As the care team worked to stabilize and care for her little girl, Shauna did not leave her daughter’s side.
What followed were years of treatment and waiting for the one thing that could make Riley better - a kidney transplant. During this difficult time, Riley’s sister Emma was born.
It’s hard to imagine the sadness Shauna must have felt when Emma was diagnosed with the same disease as her big sister. But Shauna never lost hope. As she says, “The IWK is the place to be when your kids are sick.”
October 11, 2011, is a date Shauna and her family will never forget. It’s the day they finally received the bittersweet news they had been hoping for. There was a new kidney for Riley!
Riley’s transplant was a big success but the family’s story isn’t over yet. Now a teenager, Riley continues to visit the IWK for regular check-ups, and little Emma is still on home dialysis. She’s on the active kidney transplant list, waiting and hoping for her turn to get better.
“Thanks to donor support, I’m able to stay in the room with my daughters every time they are at the IWK,” says Shauna. “I was by Riley’s side after her transplant and I will be by Emma’s side after she has hers.”
These are just two words Sarah and Charles McGraw from Riverview, New Brunswick, use to describe the night/day their three-week-old daughter, Brooke, was airlifted to the IWK Health Centre.
These words, according to her parents, describe Brooke’s personality today. She loves the movie, Frozen, Dora the Explorer, and just being active – she’s a typical four-year-old little girl.
When Sarah was pregnant with Brooke, she received an ultrasound to explore a suspected heart defect. However, everything seemed to have resolved itself and the rest of the pregnancy there were no further concerns. Shortly after her birth, Brooke was admitted into the NICU in Moncton where further tests were done. They were told she had a hole in her heart. Brooke was stable and was allowed to go home after a week. However Brooke’s pediatrician in Moncton felt she needed further monitoring and requested the family take her back to the hospital. Timing proved to be everything that day, as that advice may have saved Brooke’s life.
Upon arrival, Brooke was admitted to the pediatric ward. That night, her heart rate became dangerously high, and she was airlifted to the IWK Health Centre.
“I will never forget that moment when I stepped inside the airplane,” remembers Sarah. “What would be waiting for us when we landed? We were first time parents with millions of questions.”
Brooke was diagnosed with an Atrial Septal Defect (ASD), a hole in the wall between the two upper collecting chambers; Ventricular Septal Defect (VSD), a hole in the wall that separates the heart’s two lower chambers; Pulmonary Stenosis, a fixed obstruction of flow from the right ventricle of the heart to the pulmonary artery; Parachute Mitral Valve Stenosis, a narrowing of the heart valve; and Supraventricular tachycardia (SVT), a rapid heart rhythm.
In August of 2010, at only three months old, Brooke underwent open-heart surgery. The team wasn’t sure if they were going to have to do a valve replacement until they actually went in and took a look. If they were going to have to replace the valve it was going to be high risk as the smallest valve they make is for a three-year-old.
Brooke’s family sat in anticipation in the Ronald Macdonald room and waited until their daughter was stable enough to be moved up to the Pediatric Medical Unit. It was comforting be in a non hospital setting within the hospital and very reassuring to be just steps away from their baby.
Doctors at the IWK told Sarah and Charles to be prepared to stay for a month, but the three hour surgery went even better than anticipated.
Brooke’s heart was repaired and began to pump normally. Even though she was weak and small, this little champion was thriving and only had to spend two days in the PICU at the IWK following her surgery.
“From the night they first rushed Brooke in, to the surgery and beyond, the IWK has treated us like family. The doctors took the time to explain everything, and kept us calm during an incredibly difficult situation,” says Charles.
Because the family lives in New Brunswick, the IWK actually comes to them for Brooke’s checkups. Her care is part of the IWK’s travelling clinics that cover the entire Maritime region.
“It’s so important to have the IWK there when you need it,” says Charles. “No one expects to need it, but when you do, you’re glad they have the best equipment and the best doctors. That needs to continue. Without the IWK, Brooke would not be here today.”
Halifax, Nova Scotia
On June 16, 2007 Van Bernard was welcomed into the world with all of the hopes and dreams that two loving parents and a three-year-old big sister can have for a new member of the family. Developmentally, Van met all of the goals in his early days only tracking slightly below average on body weight which did not raise any alarming flags to his parents or pediatrician. Although he did not seem to push off on his legs like most babies will do as early as three month, in all other areas he was a healthy and happy baby boy.
At six months old Van's parents noticed tremors in both of his hands and that his legs did not seem to be as strong as they should. He wasn’t pushing himself up or sitting particularly well and he didn’t try to stand. At the same time, his pediatrician was also noticing Van’s inability to achieve some of the basic motor development milestones for a typical six-month-old. Van was referred to the neurology department at the IWK Health Centre, and within 20 minutes, the Bernard family’s life would forever be changed. Van was diagnosed with Spinal Muscular Atrophy (SMA), Type II – a degenerative neuromuscular disease that destroys the nerves controlling voluntary muscle movement.
At only 10 months old, the hopes and dreams they had for Van changed. Instead of wondering when Van would walk or talk, take his first swimming lesson or learn to skate, the Bernard’s wondered if Van’s muscular system would even progress at all before beginning to retreat.
“We were devastated. How could this be? SMA is a genetic disorder and there is no history of it in our family. Looking back, we were very blessed that he was diagnosed so quickly and that his Neurologist at the IWK immediately recognized this very rare condition.
Time is a big assumption with SMA patients and there is no cure. The impact this has on Van’s general health is that he simply doesn’t have the muscular development to cough or sneeze and clear his lungs. A common cold can affect his ability to breathe and he is always at risk for respiratory complications.
Even though he has been through so much, Van enjoys coming to the IWK. “I love all of the games that they have,” says Van. “There is no reason to be scared about coming here.”
Van will never walk but he moves around easily in his power wheelchair otherwise known as his “zoom zoom”. He enjoys many activities that a typical six-year-old enjoys. Sledge hockey, swimming, soccer…Van does it all! His charisma, sense of humour and contagious smile leave a lasting impression on everyone he encounters.
Dartmouth, Nova Scotia
Little Julianne Lord is one in a hundred -- one of a hundred babies born with Congenital Heart Disease.
During a routine 20 week ultrasound at the IWK Health Centre, a nurse noticed something might be wrong with baby Julianne’s heart and asked a doctor to follow up with an general echocardiogram just to be sure. Julianne’s parents, Marie-Eve and Ben, were shocked to learn of the results. Their unborn daughter had Critical Aortic Stenosis, a disease of the heart valves in which the opening of the aortic valve is narrowed resulting in Julianne not receiving the proper amount of blood flow. In addition, their daughter was also diagnosed with Endocardial Fibroelastosis, a thickening of the inmost lining of the heart chambers which meant that her little heart was having difficulties pumping blood. Julianne would require surgery after she was born.
“When I learned that our baby was going to need surgery at birth, I immediately saw in my head our son when he was born,” remembers Marie-Eve. “Knowing that our tiny bundle would have to suffer so much right away just made me cry.”
On October 23, 2012, Julianne was welcomed into the world by her parents and older brother Thomas. However, after only an hour of being born, baby Julianne started to show signs of heart failure and distress. While she was only six hours old, Julianne underwent her first procedure where a tiny balloon heart catheter opened her aortic valve to help with blood flow. Julianne began to show signs of improvement and after 30 long days at the IWK, the family finally received good news, they were going home!
A mother knows when something isn’t right with her baby. After only two weeks, Marie-Eve noticed that her daughter was very sleepy and was drinking less fluid. Something was wrong.
Julianne was quickly readmitted to the IWK to repeat the procedure she had done the day she was born. Unfortunately, the Lord family would have to spend the first Christmas with their new daughter at the hospital. It wasn’t long before Julianne again began to show signs of heart failure. Despite being a fighter, a new heart was Julianne’s only chance of survival and she would need to be flown directly to SickKids Hospital in Toronto for transplant assessment.
“We knew nothing about transplant, only that many people die while waiting. We just thought that we were going to lose her.”
Julianne’s care team at the IWK worked diligently with the care team at SickKids to ensure that her transition to SickKids was a seamless as possible. One of the nurses in Toronto said it was the best transfer package they had seen in a long time. In Toronto, Julianne’s health quickly deteriorated, she was in a lot of pain and extremely weak. She could not eat or breathe on her own and required round the clock sedation.
Her New heart
February 9, 2013 is a day that Ben and Marie-Eve will always remember. That is the day they received the call that Julianne was going to get her new heart! “Everything became possible again,” Marie-Eve says. “The future just opened up to us. It was by far, the best day ever!”
Julianne’s surgery went incredibly smoothly and doctors were able to close her chest right away, which is frequently not the case. At discharge, she was on 10 different medications that were spread throughout the day and night. On May 24th, the family got the okay to go home to Nova Scotia.
Today, Julianne is a beautiful, happy and bright little girl. To look at her, you’d never suspect that she has had to fight her entire life. Because of her transplant, she will forever need to be treated with immunosuppressants. The risk of rejection, infections, kidney failure and post-transplant cancer are always present, however her parents take comfort in knowing that the IWK will be there to take care of their daughter every step of the way. Julianne’s beautiful smile and sunny disposition makes it hard to believe that this strong and confident young girl has ever faced adversity.
“Organ donation saved our family. It made us better people who are able to show a greater appreciation for the smallest things in life.” ~ Ben and Marie-Eve Lord
Mira gut, cape Breton
Most babies get their first tooth when they are around six months old, but for Joshua Côté, this was not the case. Joshua’s first tooth didn’t appear until he was 11-months old and when the tooth came in, it was peg-shaped and sharp. Joshua’s parents, Jill and Marcel, took a photo to their local dentist and they were referred to the IWK Dentistry team.
When Joshua arrived at the IWK, a genetic test was done and he was diagnosed with Hypohidrotic Ectodermal Dysplasia; a gene mutation of the 23rd chromosome that affects structures of the skin. Joshua’s condition is very rare – he is only 1 of 7000 kids in the world to receive this diagnosis. As a result, he suffers from severe eczema, his hair and nails grow in thin, his teeth will all grow in peg-shaped and he has no sweat-glands, so he is unable to perspire. Because of Joshua’s inability to sweat, he is often at risk for over-heating, which could result in him not being able to breathe. He must avoid any activity where sweating is common. Joshua’s family must always be prepared to cool him down at a moment’s notice as he was once taken by ambulance to his local hospital due to overheating.
As Joshua’s teeth continued to grow in, he became more aware that they were different than those of most people he knew. He eventually started to smile less and it was getting him down. One night while Joshua and his dad were lying in bed, he touched his teeth then touched his father’s teeth and said, “Dad, I just want to be a normal boy like you and have normal teeth.” That comment led the family to their current treatment plan with the IWK’s Dentistry team.
“Thank you doesn’t begin to express how grateful we are for what the IWK has done for our family. The team has been there for us every step of the way and educated us about Joshua’s condition and how to care for him.” says Jill and Marcel. “Dr. Anderson and Dr. Taylor Farland gave Joshua his smile back. The IWK made an amazing change and difference to our lives, all for the better.”
Joshua now has a set of dentures that he calls “magic teeth” that fit over his natural teeth. These teeth have changed Joshua’s personality and he has become more confident. He smiles a lot more and says that people tell him that he is cute. He says that now when people meet him, they don’t know that he has Hypohidrotic Ectodermal Dysplasia.
For the next several years, Joshua will visit the IWK every two to three months to have his dentures re-adjusted to fit his growing jaw.
Charlottetown, Prince Edward Island
Alcide Costard and his family travelled from Charlottetown, Prince Edward Island, to receive life saving treatment at the IWK.
In 2009, Alcide’s mom and dad, Lana and Gene, were delighted to discover that they would be welcoming a new baby into their home. At their initial 12 week ultrasound, everything seemed normal. However, Lana’s doctors soon began to have some concerns and referred her to the IWK. At around 16 weeks, and ultrasound performed at the IWK indicated that little Alcide wasn’t growing as fast as he should have. A follow-up ultrasound and amnio test confirmed that their son had an intrauterine growth restriction - baby Alcide wasn’t getting the proper nutrition that he required.
Lana was carefully followed throughout the duration of her pregnancy and after careful consultation with doctors at home and the IWK, Lana and Gene decided to deliver their son via c-section at 37 weeks. Tiny Alcide weighed only 3lbs 10 oz.
At birth, Alcide’s care team at the IWK discovered that he had Vacterl Association, a genetic disorder that affects many body systems. The doctors told Lana and Gene that the first 24 hours were going to be longest and hardest because they weren’t sure if Alcide was going to make it throughout the night. Thankfully, Alcide proved them wrong, and at two days old he underwent his first two major surgeries – one to repair his esophagus, and the second to repair an imperforate anus.
At 11 months old, Alcide was scheduled to undergo his third major surgery, a Tethered Spinal Cord Repair at the IWK. However, on the day of the surgery, a blood test discovered that his kidneys were functioning at less than 18 per cent, which meant he was almost in complete renal failure. Alcide was rushed to the Nephrology unit at the IWK and immediately started treatment.
“The care that our little boy reveived was second to none,” says Gene. “The nurses in the NICU are the most loving and caring people you’ll ever meet.”
Nearly a year later, the spinal surgery was set again and this time it was done successfully.
“Without the IWK, the nurses, the doctors, the equipment and the technology that they have, Alcide wouldn’t be here,” says Lana. “The IWK isn’t a hospital, it’s like a home to us. We owe them everything.”
Today, Alcide is followed by his IWK care team every three months. He is currently doing amazingly well, and is an active, normal, and happy three-year-old boy.
Shediac, New Brunswisk
Young Danika LeBlanc is a miracle in the making. Born December 3, 2012 to Ken, Caroline, and her big sister Mia welcomed Danika into the world, little did they know that their lives were about to change. Soon after birth, baby Danika came down with a fever and was placed in the NICU at the Moncton Hospital for four days. During that time, it was also discovered that she had a heart murmur. Upon release from the hospital, the family was given information about congenital heart diseases and what symptoms to expect for the various conditions. Things took a drastic turn for the worse.
On Friday, December 14, 2012, baby Danika was rushed to the trauma room at the Moncton Hospital where the pediatric on call said that Danika’s liver was shutting down and her heart was in failure. After working on her throughout the night with minimal results, the decision was made to airlift her to the IWK.
Against all odds, the health care team at the IWK was able to stabilize her and administered several medications to her little body in an attempt to reverse damage done to her vital organs. Dr. Warren and the cardiology team determined that Danika would require surgery for her coarctation of the aorta - a narrowing of the main artery that leads out of the heart. To help the family prepare for their daughter’s surgery, the PICU care team took the time to answer any of the Leblanc’s questions and made them feel a part of the care that Danika was receiving.
Luckily, her surgery healed nicely and they were released on December 24th, the best Christmas present this family could ask for.
Today, Danika is closely monitored by a team of doctors at both the Moncton Hospital and the IWK in an effort to increase Danika’s weight gain.
“The IWK has the ability to save lives and it is the funding from generous people that truly makes a difference,” explains the LeBlanc Family. “From the bottom of our hearts and from Danika, thank you for everything that you’ve done for us.”
Simone has been a patient of the IWK Health Centre since before she was even born. At 20 weeks pregnant, her mom, Anna, began to experience complications and was referred to the IWK for a detailed ultrasound.
It was determined that her baby Simone had an enlarged ventricle of the left brain, a heart defect, seven markers for Downs Syndrome, and an issue with her left leg. Anna was shocked – a parent is never really prepared to receive difficult news.
Anna made the decision to have an amniocentesis performed, in which a small amount of amniotic fluid is drawn to help diagnosis chromosomal differences. This would help paint a clearer picture of what exactly her child would be facing.
Right away, Anna met with the Genetics and Palliative Care team at the IWK who were able to review the results of her tests as well as go over her options for her unborn child – including if she lost the baby or if she delivered a stillborn child.
Baby Simone was born on November 9, 2010. At only nine days old, she underwent surgery to repair four holes in her tiny heart. Interestingly, each hole was located directly next to each other, right in a row. Using a type of mesh, shaped like a butterfly, doctors were able to close all four holes at once instead of having to close each one individually.
The following November, Simone underwent another surgery to repair a cleft palate. Since then, she has been cared for in a number of departments at the IWK including dentistry, orthopedics, and neurology.
Looking back, even during this tumultuous time, Anna describes her experience at the IWK as caring and comforting. Even with lots of individuals coming and going from her hospital room, she was able to form relationships with her care providers. Grace MacConnell and Dr. Marie-Claude Gregoire, from the pediatric palliative care team, became familiar and friendly faces. “They knew us and we knew them, it was very comforting,” recalls Anna. “Simone had a number of fantastic doctors and nurses, but I really felt like they were there for me.”
Today, Simone can only be described as the happiest little girl on the planet – she is always smiling. At two-and-a-half, Simone loves to swim, listen to music, dance, and has recently taken up drawing. Thanks to the exceptional care that Anna and her daughter received at the IWK, Simone is doing great, and they know that no matter what challenges they may face in the future – the IWK will be right there with them, every step of the way.
Cole Harbour, Nova Scotia
Quentin is a 14-year-old survivor, fighter and patient of the IWK. Diagnosed with Superior Mesenteric Artery Syndrome (S.M.A. Syndrome), he spent approximately 20 weeks at the IWK being treated for his incredibly rare and painful disorder - so rare in fact that there are only 500 reported cases of it…ever!
S.M.A, also known as Wilkie’s Syndrome, causes a section in your small intestine to be constricted within your abdomen, making it agonizing to eat, and resulted in three separate hospitalizations for this brave young man.
In addition, Quentin is also a patient at the IWK because he has experienced problems with bullying. Over time, it led to a lot of stress, depression and anxiety. Because of his experiences, Quentin struggles with Major Depressive Disorder (MDD), anxiety, and a form of Post-Traumatic Stress Disorder (PTSD). But, he manages to get through it all.
"I spent a total of 20 weeks at the IWK and while I was there I couldn’t have asked for a nicer group of nurses,” says Quentin. “Because of the care that I received at the IWK, I am able to enjoy what I love most – sports, music, animals and acting.”
Read Quentin’s full story in our winter 2013 newsletter.
Moncton, New Brunswick
When you speak to Frédérique, affectionately known as “Freddy”, she is a bright, smiley, confident and happy 10-year-old girl. She loves helping around the house and looks forward to the day when she’s a veterinarian and can help animals.
At the young age of two, Freddy began to experience small breakouts on her body. A medical assessment at her home hospital in Gaspésie, where she was living at the time, resulted in a diagnosis of neurofibromatosis - a condition that causes the growth of tumours along nerves and under skin. This genetically-inherited and life-long condition may be harmless, or may cause serious damage by compressing nerves and other tissues. Because of her condition, Freddy has two benign tumours in her brain.
Thankfully, these tumours are not causing her any discomfort and she is able to do everything that other 10-year-old children can do.
“At the IWK they are specialized to help kids. They are very nice they always know what to say,” says Freddy. “They are very patient. Even if it takes time, they don’t ask you to hurry up.”
Today, her treatment requires visiting the IWK two to three times a year for an MRI, a visit to her neurologist or a trip to the ophthalmologist. She doesn’t mind visiting the hospital though; her parents turn it into a fun trip. Usually they get to stop at Bigg’s and Littles gift shop for a treat. This is Freddy’s story.
Dartmouth, Nova scotia
Rebecca Saunders started receiving care from the IWK before she was born. Due to complications during pregnancy, her mother was monitored closely by the team in the Fetal Assessment Unit to ensure she was born healthy. When she was two weeks old a small red mark was visible on her forehead. Her doctor confirmed that it was a Strawberry Hemangioma and Rebecca was referred to the IWK for follow up care.
Due to the location of the Hemangioma a CAT scan was ordered to ensure her breathing wasn’t being obstructed. As it continued to grow she visited the Ophthalmology department to ensure her eyesight was developing properly. Rebecca also began making regular trips to the Plastic Surgery clinic where the growth of the Hemangioma was monitored. Doctors explained to Rebecca’s parents that it would continue to grow during her first year and then start to shrink. By the time she was 5 the growth faded and just before she started school surgeons removed the extra skin that remained. She was left with a 2 inch scar that is barely noticeable. Rebecca also has several allergies and visits the lab every 2 years for blood work.
Rebecca is now a busy 11-year-old in Grade 6, who along with her sister Rachel, participates in dance, figure skating and plays piano. She also loves drawing and submitted her picture to be considered for the IWK Foundation’s holiday card contest. She was delighted to find out her version of “Penguins in the Snow” was selected as the winning entry.
“Our family has been cared for by a variety of health care professionals at the IWK and they all worked together to address our concerns and the friendly, kind, and extremely competent staff ensured Rebecca felt comfortable each time she visited the hospital.” – Janet Saunders
Hammonds Plains, Nova scotia
Last Labour Day weekend started out as a normal weekend like any other for the Rhyno family. However, it became a weekend they would never forget – it was the weekend that their two-year-old daughter Sadie had her first seizure.
Sadie was immediately rushed to the IWK Health Centre and experienced two more seizures that evening. After undergoing tests, she was diagnosed with Epilepsy. Her parents, Lori and Blair, felt scared, mad and frustrated for Sadie when they received the diagnosis, but they were relieved to know what they were dealing with.
Sadie began visiting the IWK’s Neurology team – a team she continues to see regularly. Over the last year, Sadie has been on five different medications to try to find the combination that will help control her Epilepsy. She spent eight months feeling very tired and dizzy during the trial and error period, but thankfully, she has found a combination of two medicines that are working well for her.
Since last September, Sadie has made six visits to the IWK’s emergency department and five trips to the IWK by ambulance for seizures her parents weren’t able to control at home. She was also admitted to the IWK twice for inpatient care and has undergone many tests including an MRI, a CT scan and five EEG’s – a test that measures the electrical activity of the brain using sensors that attach to the head.
Through all the ups and downs in Sadie’s journey, her parents say they are extremely thankful that the IWK has been there to support them. They know the team is committed to helping Sadie get better and feel comfortable, and they can call Sadie’s doctor and clinic nurse whenever they have questions or concerns. The Rhyno’s know that the IWK will continue to be there for them as Sadie continues to live with Epilepsy as she gets older.
Halifax, Nova scotia
Olivia Burke’s mother Shauna McKay-Burke, a licensed practical nurse, has worked in the mental health field for nearly ten years. She never imagined her own daughter would require mental health care from the IWK in the same unit where Shauna currently works. But it quickly became apparent 16-year-old Olivia Burke had an acute mental illness when she began experiencing symptoms of psychosis.
Shauna cared for Olivia at home for several weeks before she realized she couldn’t do it alone. It was difficult to open that part of her personal life to her colleagues, but she knew she was putting Olivia’s care in the best hands.
Olivia spent three months at the IWK in room 445 – a room that will forever be Olivia’s in Shauna’s eyes. Olivia is feeling better and is slowly getting her life back through regular follow-up care at the IWK. She recently returned to playing soccer and is hopeful she’ll be able to go back to her job as a lifeguard very soon.
“I am grateful to this hospital. They will do anything for these kids. They went above and beyond any expectations I had, and as an employee, my expectations were very high. As a care professional myself, I will never look at the kids and families I’m caring for the same way again. I’ll truly understand what they are going through.” – Shauna McKay-Burke
A recent gift of $10 million will support patients like Olivia through the creation of the new acute mental health inpatient unit as well as an enhanced centre for women's health care and a state-of-the-art neonatal intensive care unit at the IWK. Learn more about this incredible gift.
bedford, Nova scotia
Rebecca Boyd is an incredibly charming and charismatic young woman, whose personality and outlook on life is inspirational. In May 2012, she began to experience agonizing pains in her back and stomach. After being admitted to the IWK, Rebecca was diagnosed with a serious type of Nephritis, resulting in a severe inflammation of her kidneys. Most young adults would be upset about having to spend so much time in a hospital. But Rebecca’s contagious positive attitude is what gets her through. This is Rebecca’s Story.
michael rumsby, cole harbour, NS
Michael Rumbsy’s passion is playing hockey. But life as a hockey player took a drastic turn in 2010 when he was diagnosed with a brain tumour and had to have chemotherapy, surgery and radiation. A year later, Michael was diagnosed with a second tumour and required a stem cell transplant. Thanks to the support of his family, friends and teammates, Michael is living proof that there is strength in numbers. This is Michael’s story.
Mary & Emma, Bloomfield, PEI
Mary Clements of Bloomfield, Prince Edward Island, can barely speak when asked what might have happened to her and her unborn baby without the specialized intensive care provided by the IWK Health Centre. "Neither of us would be here today," she says, wiping away a tear. "I can't even think about it."