Ali Martens is a juggler of sorts. She has three jobs: chef, personal assistant, and coordinator of life for her son. Her third job is unpaid and takes at least 20 hours per week. She is the mother of eight-year-old Jacob, who was born as a “micro-preemie” at 24 weeks, leaving him with a host of complications that continue to impact his life significantly. Ali has been there for Jacob every step of the way, and the bond between them is breathtaking. The role of mother and advocate for a child with complex needs is one that she embraces with fierce determination and conviction. And Ali looks beyond herself: her hope to help others on similar roads began with the seed of one day realizing her dream of getting laundry facilities into the Stollery. That initial goal has exploded into other areas of involvement that Ali could not have anticipated, but she uses her experiences and understanding of the medical world to make things happen. Ali lives in Grande Prairie. She is trained as a chef and is passionate about dog-sledding

– both fascinating interests, but nothing that would prepare her for the world of medical needs that her son introduced her to when he entered the world in 2008. When Ali started showing signs of premature labour, she was flown to Edmonton for his birth, as the local Queen Elizabeth II Hospital was not equipped to sustain a baby born at 24 weeks gestation. Ali explains that such an early birth presents the possibility of complications in four vital areas: brain, bowels, lungs and heart. Jacob’s early arrival resulted in impairment in all four. Additionally, he had significant PDA, or patent ductus arteriosus – the shunting of blood through the heart

Alison Martens

Family

Patient

Engagement

Communication

Patient Centred

Care

Family Centred

Care

Families as partners: - at the bedside - in the operation of the hospital

Respect and

Dignity

Participation

Collaboration

Training of Staff

Child Life

Social Work

Written by Karen Klak

PFCC Story Series

away from the lungs. Usually, this problem resolves itself fairly quickly for the prematurely born baby; with Jacob, it took months. He spent 187 days in the NICU at the Stollery’s Royal Alexandra site, staying long past his September 7

th due date, and

giving Ali time to approach the unit manager to request a primary care team for her son which she was able to implement. Jacob then spent 115 days in the Stollery Children’s Hospital ICE unit, where care is one nurse for every two patients. By the age of one, Jacob was well enough to finally go home to Grande Prairie. Ali was initially told she’d have to relocate to Edmonton, but she refused to leave home and the support system of family and friends that were established there. Jacob was in an out of hospital multiple times over the next two years, culminating with three strokes that occurred only two weeks after his third birthday. On that day, June 2

nd 2011, Ali says pointedly,

“He went from being my special guy to being my very special guy.” Jacob’s life was hanging by a thread after the strokes, and Ali was told by a compassionate ER physician that she had reached a moment – a burden that no parent is equipped to handle. Ali chose to try to save Jacob’s

life, and she clearly remembers the belt the Neurosurgeon was wearing when he came to talk to her at 4 am in ER – it had golf clubs on it, a detail that is etched in her mind from that pivotal time. Jacob was taken to the operating room, and there was no guarantee that he would return. When she next saw him, a surprisingly short few hours later, Ali noticed a very odd look on his face and was terrified that she’d made the wrong decision for her child. Jacob’s pediatrician, came, explaining to Ali that Jacob was exhibiting an instinctual response to pain. He began to cry and scream, not stopping for three full weeks other than when his worn out little body would sleep. It was a wise Child Life Specialist who pointed out that Jacob was

Alison Martens

Patient and Family Centred Care Story Series

angry, like all kids with brain injuries, and this was his way of expressing his anger. The strokes had caused complete loss of vision and movement for Jacob, and Ali struggled with how to explain to her son why he suddenly couldn’t see or move. Following surgery, Jacob had to have blood drawn every 12 to 72 hours. It became so difficult to draw blood from him that even Jacob’s doctor, the master of needle pokes, wasn’t successful. Ali was terrified when she noticed that Jacob began to “go away” – and she feared that he might not come back. She remembers curling up in a ball on the floor of his room, not wanting that life for her son.

Alison Martens

Alison Martens

Patient and Family Centred Care Story Series

Alison Martens

Alison Martens

CAPHC (Canadian Association of Pediatric Health Centres) conference in Toronto, presenting with a Neonatologist and a fellow parent on their involvement with Pediatric Fellowship training. Ali and fellow PFCC Network Members “act” as parents in training sessions in lieu of paid actors. The scope of conversations that they have is huge, and for Ali, the acting comes naturally as she’s lived that role, over and over again. She has had real end of life conversations with Jake’s doctors 13 times, as well as many other conversations that the Fellows need to practice. Ali is involved in the training sessions on an ongoing basis, and feels a level of validation in doing so in that what she and Jake have lived can help other families in the future – an example of something Ali calls “Jacob’s Legacy.” A Neo-natal Nurse Practitioner sought out Ali’s help for another project – she is one of two parents involved with the 2030 hospital plan, helping by

suggesting ways to make spaces as functional as possible for parents. Ali already has experience in the realm of space planning, as she was a vocal contributing member of the design committee for the new Grande Prairie Regional Hospital and

proudly relays that each patient room in pediatrics and NICU has a parent bed, chair, light source, storage with a refrigerator, and a bathroom: half with wheelchair accessible showers and

the other half with bathtubs, as parents like Ali enjoy giving their kids baths when possible. And therein lies the benefit of having a parent on board – many of these items may seem unnecessary to onlookers, but become obviously important when one lives with their child in a hospital. Because of the advocacy efforts of Ali and others like her, the Alberta’s Best Practice for the Physical Footprint of a Pediatric Space has increased the standard capacity of an inpatient room from 18.3 to 23.6 square

Ali has found her niche with the

Patient & Family Centred Care

Council and the very real impact

she’s having.

A Nurse Practitioner from Neurosurgery lay on the floor with her and wrapped her arms around Ali, soothing her and just being with her in her agony, and promising to do something for Jacob. Ali is still in awe of this moment of true family centred care – a professional allowing herself to join a parent in a time of great distress and despair. The same Nurse Practitioner came up with the suggestion of an IVAD, a central line that could be used to draw blood, and a turning point was reached. Jacob’s anger subsided, his will to live returned, and his hospitalizations slowed down a little. This left Ali with a bit of time to breathe and really think – she pondered the thought that Jacob might live, and if so, who was she? She had become “Jacob’s mom” with no identity of her own, and she knew she needed to make a change. As a result, Ali stepped into the world of family centred care four years ago by joining the Stollery’s Family Centred Care Council. When asked how she became involved, she rattles off a list of names of medical professionals who suggested that she could effect change through the Council. One of her earliest opportunities was at a

Alison Martens

Alison Martens

Alison Martens

meters. “That’s almost one-third!” Ali points out excitedly. For Jacob, no one can predict what’s around the next corner. Breathing issues are huge, he has kidney problems, and he is currently on his 22

nd shunt. When

the next one will be needed is a mystery, as Ali says, “The only one who knows how long a shunt will last is God, and he doesn’t do flyers.” He has spent time in four of the five main inpatient units at the Stollery – PICU, Cardiology, Surgery and Medicine. He has not spent time in Oncology, which is fine with Ali. Jacob has been flown to Edmonton 14 times, and Ali insists on going with him each time, knowing that if Jacob is going to die enroute, his mom will be at his side. Jacob requires constant care: Ali manages a team of eight caregivers funded by both Homecare and Family Support for Children with Disabilities. On this day, he and Ali are at Ronald McDonald House, their home away from home. Actually, being here, just like being at the Stollery, is where life feels most “normal,” where strangers don’t stare or turn away from Jacob just because he looks different, and where Ali doesn’t have a staff to manage. Ali’s best friend Gail has travelled with them – as Jacob can never be left on his own. His needs are many, but upon meeting Jacob, one is struck by his peaceful and captivating essence that keeps you in the moment. He will grasp your finger with his small, soft hand, and your heart melts. Jacob is non-verbal, but communicates through subtle facial movements – eyebrow up means yes, and other subtle

movements mean no. Ali is currently working with Speech Language Pathologists on augmented communication plans. “They have plenty of ideas,” says Ali, “but limited experience with what works.” Ali is undaunted, and continues to work with many professionals to find what is best for her son.

His customized wheelchair has space to carry his suction machine, oxygen tank, oxygen monitor and feed pump. It was initially difficult to get a wheelchair for him, as Ali was told he’d be fine in a stroller. She pushed for

the more supportive wheelchair which has recently had a plexiglass tray added for Jacob’s toys and augmentative communication devices, created by Ali’s good friend Shel. While services in Grande Prairie are available to Jacob, his needs are most often just a little beyond their scope. And so Ali continues to advocate – for home care, education and medical needs.

“There’s a fine line,” she explains when talking about her efforts to work with various organizations. “We need these things, but in a different way, so how can we work together to make this work?” Looking back, Ali

remembers her first encounter with a social worker, fearing that something in her file would result in Jacob being taken away from her. Instead, social workers have turned out to be one of her best supports, and Ali has even toyed with the idea of becoming a social worker herself to help others. For the meantime, Ali has

Patient and Family Centred Care Story Series

Stollery Children’s Hospital Family Centred Care Vision Statement

Alison Martens Alison Martens

Alison Martens

found her niche with the Family Centred Care Council and the very real impact she’s having. She has witnessed firsthand what family centred care is throughout Jacob’s life, and she realizes that as his mom, she is absolutely the expert when it comes to ensuring success for her son. One thing she hopes to change is the message that is often sent to new parents. When Jacob was born, Ali and Jacob’s dad, Jim, were told that it was far more important for her to be with the baby than for his dad to be there. Ali is exasperated when she talks about this, “What kind of message does that send?” She feels that the message needs to be that both parents are important. And the further frustrating message that parents should drop everything and focus on their child, instead of reminding parents of the critical importance of caring for themselves so that they then have the strength to care effectively for their child. Ali believes that through counselling, parents can develop the tools they need to cope thereby hopefully avoiding the need for crisis intervention. And finally, Ali hopes one day both parents will equally considered vital members of a child’s care team. For now, Ali continues to fight for Jacob and to advocate for changes that will benefit other families. She has found herself again.

The Stollery Children’s Hospital strives to be a leader in family centred care by placing children and youth at the centre of how we provide care.

We always recognize the family as valued members of their child’s care team and in the operations of the hospital.

We aspire to practice family centred care in a collaborative, consistent and continuous way.