From patient to med student: Shira’s Doernbecher story

Below, Shira Einstein, a third-year medical student at the OHSU School of Medicine, shares her powerful Doernbecher story.

Many of us who decide to go into the medical field do so bearing scars. Mine happens to be about 1-inch-long under my left collarbone, where a port-a-cath was placed nine years ago in order to administer my IV chemotherapy treatments.

I was a freshman in high school when I was diagnosed with Hodgkin’s Lymphoma, stage 2A. After months of frustrating symptoms and an MRI scan, I sat in a meeting room with my parents on either side of me and a team of oncologists on the 10th floor of OHSU Doernbecher Children’s Hospital on March 9, 2007, I was told I had cancer. One of the people in the room was Dr. Linda Stork, who continues to be a blessing in my life.

As many of my friends and family members would attest, I am obnoxiously optimistic and positive. If you want someone to mope with about the deep dark troubles of the world I am not your girl.

That’s how I dealt with cancer. I swept the fear, pain, anxiety and confusion under the rug to deal with at a later time. This was, for the time being, a helpful coping mechanism for 15-year-old bald cancer patient me, who tried to hold onto every piece of sunshine during those dark months. My family, friends, nurses and doctors caught onto this strategy. They also did not take long to realize that I was extremely curious about the science and medicine of my disease. My treatments became lessons about cells and the human body.

Dr. Linda Stork and Shira

I also recognized that I had incredible privilege to have access to excellent medical care, an understanding that is painfully validated each time I travel to impoverished communities locally and globally, witnessing the suffering that others experience under similar circumstances.

There was only one journey for me to embark on, I decided. I was going to become a doctor.

This August I will officially be eight years cancer free! I am finishing up my second year of medical school at OHSU, and celebrate being healthy each day by striving to learn as much as possible and provide compassionate care to each patient I have the privilege of meeting. In the same rooms where I once was the patient, it is now my turn to provide information, strength, and hope when I can. For me, being a cancer survivor comes with a responsibility to love my life and to invest in the health of others. It is a privilege to embark on a career path where I will have that opportunity each day!

LLS Woman of the Year: Shira!

LLS Woman of the Year: Shira!

 

The battle of a lifetime

National Cancer Survivors Day is a celebration for those who have survived, an inspiration for those recently diagnosed, a gathering of support for families and an outreach to the community. Below, Elaine Brockhage shares her Doernbecher story and how her diagnosis at age 12 continues to impact her life today.

Cancer is something you fight. The patient himself fights. The patient’s family fights. The family’s friends fight. Even good Samaritan strangers join in the battle. When I was 12, I got diagnosed with a malignant brain tumor, and out of all the advice I got (both the good and the questionable) one theme rang true: to fight.

“Fight like superwoman.” they told me.

“Fight like a flower, growing out of cement.”

“Fight like a survivor; fight for your life.”

So I fought, and so did those around me. Of course, I must admit that I wasn’t always aware of this raging war. First, I was so drugged out half the time that I didn’t really know what was happening. Second, I was not thinking about the fact that I needed to fight. I was thinking about how I didn’t feel good, and wanted to feel better. I was thinking about returning to my former life, exactly as I had left it.

Treatment lasted a little bit over a year, and then I went into remission, and then survivorship. For my follow up care, I go to Doernbecher Children’s Hospital. I’m 20 now, and enrolled full time at George Fox University. A lot of the time, it feels like I lead sort of a double life. I am a college student, dealing with stress that comes from being in school, meeting (or not meeting) homework deadlines, and learning how to live with roommates. The other part of me goes back to the hospital for check-ups and deals with the post effects of treatment (messed-up balance, decreased brain function from the radiation, and unstable eyes, to name a few).

Half of me is so grateful and blessed to be alive and walking, able to see things with single, 3-D vision. I can learn things formerly deemed impossible for brain cancer survivors to learn, and I have the ability to go places where we couldn’t have gone before.

But the other half of me is bereaved and hollow. I struggle with some things that other people never will, and I feel overcome by self-pity. I remember other kids who were in the hospital with me, and guilt sets in. And these feelings are difficult to voice, because they are often perceived as wrong, and met with criticism.

And I’m fighting against this second half of me. I fight against envy and grief, feelings of isolation and paranoia. I fight to find out who the new, post-cancer Elaine is, and I fight to accept her. I feel this fight more than I ever did when I had cancer, and like anyone who is facing a difficulty, it’s important to remember what keeps me going and why I don’t just give up.

I’ve thought about it a lot, and I think there are three main things. One of them is my faith, which gives me direction and a goal. The second is other people, because when I can laugh and have a good time with someone who is close to me, or listen and learn from someone else’s story, then I know that I am living. The last one is my attitude. It’s when I can take steps to help myself, and when I can look past the troubles that I am facing now, and on to something better. And then I know that even though this battle is far from over, it will still be won.

 

 

‘Story Beads’ help tell oncology patients’ stories at Doernbecher

At Doernbecher, every bead has a story. Strung together, these beads take on an even greater meaning: helping oncology patients conceptualize, cope with and share their cancer journeys.

The Story Bead Program began at Doernbecher in 2003 and is supported by the Doernbecher Child Life program.

Every year, there are about 250 newly diagnosed cancer patients treated at Doernbecher. If a child is interested in participating in the Story Bead Program, they are given an opportunity to capture their own medical journey – one bead at a time.

Each “starter string” begins with a bead symbolizing the patient’s unit and letter beads spelling out the patient’s name. From there, they add beads that represent their procedures, their milestones and their emotions along the way. Some examples:

  • A crab bead: Making someone smile
  • A purple heart bead: A transfer to the ICU
  • A blue bead: A sleepover in the hospital
  • A light green bead: A good day
  • A yellow bead: A bad day

Patients can also receive beads for specific procedures, “pokes” and transplants.

The Story Bead Program is intended to record the milestones of the treatment process. It can be a long and difficult journey, and the beads are a tangible way of acknowledging the challenges along the way.

“There is a personal transformation that happens when the joy of creating becomes larger than the pain,” said Peggy Adams, a Child Life specialist who helps oversee the program. “The Story Beads become a badge of patients’ accomplishments.”

Some of the beads were added by request: For example, a patient suggested adding the clock bead to symbolize patience. Another patient asked for a frog bead to celebrate learning to swallow pills.

Another patient suggested replacing the “hair falling out” bead, which used to be small and brown, with a big, bright orange bead with a smiling face to represent something that is a “BIG deal.”

When they go back to school, patients receive an apple bead to commemorate the milestone. Some even bring their story beads with them to show-and-tell to help their friends and classmates understand what their treatment process was like.

Many patients continue to add beads to their story when they come in for visits after therapy has finished.

“Our patients make their stories as they go,” said Kathy Perko, a pediatric nurse practitioner who helped bring the program to Doernbecher. “The beads help tell every individual child’s story.”

Sometimes, it helps grown-ups understand the child’s experience better, too. Kathy remembers a 6-year-old patient who was discussing her “bad day” beads, one of which represented her leukemia recurrence.

“She said, ‘One time I was crabby with my mom. Another time my cancer came back. And another time I just had a rough day.’ Her way of thinking about what a bad day was is pretty humbling – it really puts things back in perspective,” Kathy said.

Meet Dr. Maggie Stoeckel

We sat down with pediatric psychology fellow Maggie Stoeckel, Ph.D., to learn more about her role at OHSU Doernbecher Children’s Hospital and how she and her team work together to help patients and families.

What do you do at OHSU Doernbecher? 

I’m completely embedded in the GI service and am available for all patients who have any kind of psychosocial needs. My primary role is working with kids that have chronic illnesses – the patients I see the most have inflammatory bowel disease (IBD), chronic abdominal pain, liver disease or encopresis.

As kids are growing up, it’s hard to manage chronic illnesses on top of normal developmental challenges. As a result, our patients can be vulnerable to depression and anxiety and might experience difficulty taking medication or difficult family dynamics. My job is to see the patient and family as a whole and address all of their needs.

What’s unique about this role? 

We have a multidisciplinary team that consists of GI providers (including doctors, nurse practitioners, nurses, medical assistants, a social worker and a dietitian) and we work together on a daily basis in clinic. Our goal is to provide holistic care.

I really enjoy working in a multidisciplinary team; we’re always learning from one another and it makes it exciting to come to work every day. No two days are the same!

What’s your favorite part of your job? 

Just seeing the patients every day – it’s really rewarding to see kids smiling after going through some significant challenges with their health.

What encouragement would you give to patients and families? 

It’s normal to have strong emotions around chronic illness. I also want families to know I’m here as a resource in the good times and the bad times. Prevention is really important – we do so much better with preventing crises (as opposed to intervening when things get really bad). That’s one reason why it’s beneficial to have an integrated model – families meet me from the get-go and know that I’m part of the team.

The force is strong with this one: Justin’s Doernbecher story

Earlier this year, OHSU Doernbecher Children’s Hospital patients, family and employees were treated to a special visit from Star Wars characters from the Cloud City Garrison thanks to the hard work of 14-year-old Doernbecher patient Justin. Below, Justin’s mom, Joanna, shares her son’s story and why this project meant so much to their family.

***

When he was only 3 years old, Justin was diagnosed with Type 1 diabetes. We had been noticing that he was urinating frequently and was thirsty all the time. Coincidently, I had heard about the symptoms of Type 1 diabetes from a co-worker of mine, two weeks prior to Justin’s diagnosis. When Justin began exhibiting those same symptoms (extreme thirst, frequent urination, loss of weight, etc.), I knew we had to get Justin in to see his pediatrician.

They initially did a urine test, and the nurse came back in the room and stated that Justin had sugar in his urine. They then did blood work to confirm the diagnosis of Type 1 diabetes. Because he wasn’t sick, Justin wasn’t really aware of what was going on – but my husband and I cried when we heard the diagnosis. As parents, we were scared. At the time, we lived south of Eugene and Justin’s pediatrician immediately sent us up to OHSU Doernbecher Children’s Hospital.

Doernbecher welcomed Justin and our family with open arms when we arrived. We met with many people at the time of his diagnosis, including his new pediatric endocrinologist, Dr. Bruce Boston. Justin’s child diabetes educator, Joannie Kono, also met with us to go over all of Justin’s insulin needs and talk through what life would look like with Type 1 diabetes.

We were in the hospital and all of the nurses, volunteers and doctors were extremely supportive. Justin remembers having his blood pressure checked because the cuff had dinosaurs on it – every time his blood pressure was taken, Justin said it felt like the dinosaurs were giving his arm a big hug. The nurses thought that was cute!

There were many wonderful volunteers that came in to play with Justin so that my husband and I could take time to learn everything there was to learn about Type 1 diabetes and our new life with this disease.

Everyone involved in Justin’s care was compassionate, and it made our time there much more enjoyable, given the circumstances. He’s been going to OHSU for his diabetes care since his diagnosis and he continues to see Dr. Boston and Joannie Kono.

Doernbecher Children’s Hospital is a wonderful place to be, with a lot of amazing, caring people. I would tell other parents that they’re in the best hands at Doernbecher. The doctors, nurses and volunteers are extremely compassionate, giving individuals and the staff made our time at Doernbecher memorable.

When Justin was planning a community service project, he didn’t even have to think twice about what he was going to do. Doernbecher has been a place he’s remembered since his diagnosis, and he wanted to find a way to give back to the hospital that gave to him and to our family in his time of need.

Justin wanted to bring joy to the patients and families at Doernbecher – and he LOVES Star Wars – so he emailed the Cloud City Garrison (a chapter of the 501st Legion of Stormtroopers) to see if they’d be willing to volunteer their time to help out. Justin explained his service project and requested support from Target and Lowe’s, which both donated toys to hand out to Doernbecher patients and families. It was a great success!

On the big day, Justin got great satisfaction in seeing the looks on people’s faces – children, families and employees – when they saw that the Star Wars characters were coming in to bring joy to patients and families. He says “it was a joy to my heart” and wants to do this community service project every year.

Learn more about Justin’s community service project here.

Let’s talk about gender

This article was written by Katie Vaughan and illustrated by Sol Linero. It originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine. 

When kids are bombarded with messages about how girls and boys should act, families can help cut through the noise with a conversation.

With gender in the headlines – toy aisles ditching their pink and blue labels, the shocking pay gap for our Women’s World Cup champions, the evolution of Caitlyn Jenner – the complicated topic can feel like a news trend of the day. Of course, ideas about gender and its role in our lives, and in children’s development, are not trends at all. We’ve been carrying them around since we were born.

“The perception of gender impacts everyone throughout their lives, because of what gets imposed on us about gender roles, gender norms and societal expectations,” says Amy Penkin, program coordinator of the OHSU Transgender Health Program.

What’s new – and healthy – about today is the dialogue.

The definition of gender is still fluctuating in the medical community, but here’s the general idea: Sex is anatomical and chromosomal. Gender is how you identify psychologically or emotionally.

“Gender identity is about the inner sense of self. It’s about how we perceive ourselves,” says Dr. Kara Connelly, a pediatric endocrinologist at OHSU Doernbecher Children’s Hospital. Gender can be reflected in the way we think, feel, behave and present ourselves.

Children absorb ideas about gender from all directions. As a parent, it’s easy to be intimidated by the lingo or overwhelmed that everything children see and hear about gender could impact their development. So we asked child and family health care professionals how parents can tackle gender issues and raise healthy kids – who aren’t burdened by unhealthy stereotypes.

 

Finding their way

Children start to identify gender at a very early age. In most cases, a child will start to develop their own gender identity as young as 3. As they grow, children want to understand how they fit into the world, and their gender identity is an important part of that development.

Sometimes, what a child determines to be their inner identity conflicts with how society expects them to behave, which can be damaging to their sense of self.

“It creates a lot of internal conflict if a child’s beliefs about who are they are differ from the outside world’s acknowledgment of that identity,” says Dr. Naomi Fishman, a child and adolescent psychiatry fellow at OHSU.

It can be as simple as a girl feeling bad because the toys she wants to play with are considered “boy” toys or as complex as a child being ashamed and confused because their inner gender identity doesn’t match their outer appearance.

Kids can take in a lot of ideas just by observing what their parents say and do, but constantly worrying about whether you might be passing on judgments or reinforcing stereotypes will drive parents crazy. Fortunately, the solution is simple.

Dr. Fishman says it starts with taking time to listen: “If you want to support your kids in exploring their gender, be genuinely curious and spend time with them.”

If you’re worried about using the most PC terms and asking all the right questions, don’t be.

“You don’t need to interrogate them,” says Dr. Fishman. “Just be open, available and supportive. Allow kids to be honest about exploring their gender identity.”

 

Pink footballs, blue dolls

A lot of the messages children receive about gender come in the form of societal stereotypes, and it starts before we’re even born. Picture a standard baby shower, with everything from decorations to gifts to the cake in either pink or blue.

Kids start to notice these stereotypes right away. If your child repeats some conventional idea they’ve picked up somewhere (“girls play with dolls and boys play with trucks,” “pink is a girl color,” “boys are better at science”), Dr. Fishman advises taking it as an opportunity to talk openly: Ask your child if they believe it’s true. Encourage kids to talk about how they feel about a certain color or toy, instead of focusing on what someone else told them. You don’t need to be laser-focused on the minutiae of gender stereotypes and how you (or your friends or teachers or coaches or movies or…) might be passing them on. If you have an open mind and keep the conversation flowing, you’re on the right path.

Internalizing gender stereotypes can affect more than just the toys children play with; they can be especially damaging when it comes to body image.

“Kids today are inundated with images of what is supposed to be beauty and strength and power and desirability,” says Dr. Craigan Usher, program director of Child and Adolescent Psychiatry at OHSU Doernbecher. “We’re seeing the impact of that in a lot of ways, like the increased rate of disordered eating in the last 20 years or so.”

The best thing parents can do to help children deal with body issues and other negative effects of stereotypes is to make space for the multitude of ways in which someone can be a man or a woman.

“Expose kids to the different ways that people can dress and think, feel and look,” says Dr. Usher, adding that Doernbecher also offers a variety of psychiatric and therapeutic resources for adolescents who are struggling with gender identity or body image.

So while the repercussions of stereotypes and how they play into gender identity can seem limitless, the overall advice from health professionals is this: Don’t worry too much! Stay open-minded. Listen. Encourage kids to express themselves honestly and show interest in what truly makes them happy. And, hey, maybe start a family petition to address the pay gap for those Women’s World Cup athletes.

 

On gender’s spectrum, let kids settle where they’re comfortable

If children start to determine their gender identity as young as 3 years of age, that means that some children might realize early on that their gender identity doesn’t match their external appearance. Children easily pick up on gender stereotypes, and our society is constantly reinforcing ideas about how a certain gender should look, think and behave. That can lead to a lot of confusion and shame for children who feel pressured to look or act in a way that doesn’t line up with how they feel.

Every person is unique, and every person’s gender expression is unique. That also means each path to a comfortable gender identity is different. In their quest, some people may choose to change their name, style their hair a certain way, or be called by a different pronoun. Others might choose to undergo full surgical transitions. No matter the path, the earlier a person can start this process, the easier it will be in the long run.

“If kids are supported in their quest to explore their gender identity and expression from an early age, they can often be saved from years of emotional and psychological distress,” says Dr. Connelly.

As with most other issues families face, the path to raising a healthy and happy transgender child starts with an open mind.

“When you accept your child’s expression early on and allow them to live that role, your child can live a much more anxiety-free life,” Dr. Connelly says.

Still, parents don’t need to jump to conclusions: “A boy who wants to wear dresses for a while is very different from a boy who says with certainty, ‘I am a girl,'” she notes. “All children should be allowed to express their identity in a way that makes them feel comfortable.”

Gender transition may be in the public eye more these days, but it’s certainly not new. “We’ve been helping patients transition for decades,” Dr. Connelly says. “The hormones and surgical processes are not new.”

But with more public awareness comes, hopefully, more acceptance and more connections. Transgender youth have higher rates of anxiety and depression and a higher risk of suicide than cisgender children (those whose internal gender matches their sex at birth). They are also more likely to face bullying and abuse.

“Transgender kids really benefit from support and meeting other gender-diverse kids and families who are going through the same thing,” says Dr. Usher. “It helps to know that there are other people out there confronting the same issues and that there is a path for them.”

In 2014, OHSU created a work group devoted to improving transgender health services. The group hopes to better support children and families who may be struggling with gender identity considerations. Their aim is to improve access and links to a variety of resources, including mental health consultations, ongoing individual or family therapy support, hormone treatment, physical transitions and more.

Dr. Usher believes the increasing health resources for transgender youth and their families mean we’re moving in the right direction, but the psychology of gender transition is still a changing field, with still more steps to take in our growing understanding. Much of the study done on the topic in previous decades was heavily influenced by societal constructs.

“Even the term ‘gender dysphoria,’ which is now included in the latest psychiatric diagnosis manual, is problematic,” says Dr. Usher. “It implies that a child or teen needs to be sad because their internal gender doesn’t match their external sex; it doesn’t leave room for someone to be happy or proud.”

Additional resources

  • OHSU Transgender Health Program: People have come from around the world to access OHSU’s staff and facilities.For more on its Transgender Health Program, email transhealth@ohsu.edu or call 503-494-7970.
  • TransActive Gender Center: Community-centered local network that supports transgender and gender diverse young people and their families.
  • Outside In: A Portland non-profit dedicated to homeless youth, Outside In also offers LGBTQ-focused services.

Under pressure: For kids with hypertension, the time to make changes is now

This article was written by Megan Haverman and originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine.

While in the past high blood pressure in children has usually been considered a secondary symptom of something else, like kidney or heart disease, today children, like adults, are increasingly experiencing issues associated with being overweight.

According to Jennifer Huang, M.D., a pediatric cardiologist at OHSU Doernbecher Children’s Hospital, “It’s becoming more and more common for kids to have hypertension or high blood pressure even without the primary causes.” And every year this number goes up.

Hyperlipidemia, a condition defined as a high presence of fats circulating in the blood, frequently accompanies high blood pressure and is associated with obesity. “Some children have the disease because it’s familial,” explains Dr. Huang, “but most of the kids coming in are significantly obese.”

The good news is that children with hypertension aren’t condemned to a life of high blood pressure. When lifestyle is modified before adulthood, blood pressure can be “cured” in kids – as long as those changes are maintained.

“Change is easier with kids than adults,” Dr. Huang says, “but if you look at the kids with hypertension and hyperlipidemia, their parents have hypertension and hyperlipidemia because they already have that lifestyle.”

Dr. Huang says she and her colleagues – such as Laurie Armsby, M.D., also a pediatric cardiologist – can work to assist parents trying to alter their children’s lifestyle through a more holistic program, including children’s gym activity and consultation with a dietician.

Medication can also be helpful for controlling blood pressure, though the diuretics used as a primary line for adults aren’t the go-to for children. Pediatricians often prefer ACE inhibitors, which target the kidneys as they adjust blood pressure through many different hormones and markers.

“It’s a feedback loop. When you have high blood pressure a long time, your kidneys become intolerant to that, and they react the same way as someone with normal blood pressure,” Dr. Huang clarifies. ACE inhibitors work by blocking one of these kidney hormones to help lower blood pressure, stabilizing the feedback loop. Younger children have lower blood pressure targets than older children, and the scale varies based on age and height percentile.

But just like high blood pressure in adults, hypertension in children often displays no symptoms and is found during routine screenings. “In a cardiology clinic we check blood pressure with every visit,” Dr. Huang says, noting the contrast with a standard wellness checkup: “Especially with younger children, they’re not getting their blood pressure checked on their primary care visit.”

Parents who suspect hypertension – or simply want reassurance that their child doesn’t have a problem that needs addressing now – should ask their pediatrician to break out the blood pressure cuff.

If you’re concerned about your child’s blood pressure, talk to your pediatrician or call (503) 346-0640 to reach the pediatric cardiology program at OHSU Doernbecher.

Is rice cereal safe for your child?

A study conducted by researchers at Dartmouth published in JAMA Pediatrics found that infants who consume increased amounts of rice cereals and foods containing rice have higher levels of urinary arsenic. Arsenic exposure is associated with an increased risk of neurocognitive problems in children.

In light of these recent findings, what are parents to think?

The FDA has just proposed new guidelines on the allowable amounts of arsenic in rice cereal that is parallel to the level set by the European Commission (EC) for rice intended for the production of food for infants and young children. (The EC standard concerns the rice itself; the FDA’s proposed guidance sets a draft level for inorganic arsenic in infant rice cereal.) FDA testing found that the majority of infant rice cereal currently on the market either meets, or is close to, the proposed action level.

Why is rice higher in arsenic than other grains?

Arsenic is present naturally in soil and water, and fertilizers and pesticides contribute additional amounts. As rice plants grow, they take up arsenic more readily than other crops. A rice labeled as organic does not guarantee a low level of arsenic due to these natural sources.

What should parents feed their infants and children?

The American Academy of Pediatrics recommends that infants be exclusively breastfed for about six months, followed by continued breastfeeding as complementary foods are introduced. When a child is around six months, infant cereals can be gradually introduced. Rice cereal fortified with iron is a good source of nutrients, but it shouldn’t be the only source, and does not need to be the first source. Oat, barley and multigrain cereals are other options.

The FDA is also advising pregnant women to consume a variety of grains, in order to limit potential arsenic exposure to the developing fetus. Washing the rice prior to cooking also helps decrease the levels of arsenic, although this may also decrease the amounts of nutrients.

 

Natasha Polensek, M.D.
Director, Doernbecher Healthy Lifestyles Clinic
Clinical Associate Professor of Pediatrics
OHSU Doernbecher Children’s Hospital

 

Swimming in the NICU

The moment your child is admitted to the NICU, your life changes. Below, Megan explains how she stayed afloat in the NICU and shares some tips for other families who aren’t sure who or how to ask for help.

***

The birth of our youngest son on June 20, 2014, marked the beginning of a 3-month stay at OHSU Doernbecher Children’s Hospital. Although a prenatal diagnosis meant we were expecting a stay in the NICU, our family felt like we were thrown into the deep end of the proverbial pool.

As the mom, I felt like I was drowning in new medical terminologies, environments, demands, rhythms and uncertainties. It was sink or swim for the sake of our son. One fact I knew for certain: I needed help.

I slowly learned to ask for help, though it took longer in some areas than it did in others. At first, my voice was weak and sputtering, but with time, it became more clear and confident. No pamphlet or book could have prepared us for life in the NICU, but I hope my experiences will be helpful for other families learning to “swim” in the NICU.

Getting clarity from your care team

After experiencing my first set of “rounds” in the pod, I felt like I had more questions than answers – the medical staff seemed to be speaking a foreign language in an alternate universe and there were multiple unfamiliar monitors and equipment attached to my son.

On day 3, I realized my son’s nurse had been his nurse the day before. She was my first lifeline. I was discharged and able to spend some more time at his bedside. Nurse Mary slowly explained the equipment I was curious about, she talked through the different types of care she was providing and offered the postpartum practical tips for where to find pumping supplies and how to order lunch.

The next day when the doctors discussed my son’s case and post-surgery treatments, my mind was full of even more questions. Nurse Mary answered a lot of them and encouraged me to talk to the doctors for further clarification. I remember being surprised by the fact that we could actively participate in these conversations instead of letting them talk among themselves. My husband requested to talk to a doctor at the convenience of their schedule.

These initial conversations with the doctors laid a foundation for a mutual trust and respect with the end goal of improving our son’s health. The attending doctors were very knowledgeable with regard to diagnoses and treatments and the residents continually made time to answer our questions, even if it meant doing additional research or consulting their colleagues. They were eager to provide the help that we, as parents, needed.

Building your hospital team

While the doctors and nurses coordinated the care of my son, I soon realized that there were other hospital staff members who were available to care for patients’ family members. There is a social worker dedicated to the NICU patients and their families. The social worker can help with lodging, with postpartum care and with many other individualized need-based services.

In addition, a newly-formed hospital committee, which includes hospital staff and “graduate” parents, is dedicated to supporting NICU families at OHSU Doernbecher. The committee hosts activities near the unit and is also available to meet upon request. The committee is a great resource for those seeking conversation with and support from parents who have found themselves in similar circumstances. They understand what you’re going through, because they’ve been there.

Reaching out to volunteers

Weeks passed before I even considered leaving my son’s bedside vacant for an extended period of time during the day. I was “that mom” – the one who would have slept there if she could. Volunteers are often available to help on the unit – they provide an extra set of arms to hold your child if you need an afternoon away. Others serve families by taking pictures of the babies on unit and delivering printed copies back to the bedside. These volunteers delight in caring for the smallest lives at OHSU. Never hesitate to approach a volunteer and ask for help – that’s why they’re there!

Asking family and friends for help    

This last category of caregivers seemed to be the easiest to ask, but in the early days it’s hard to know what to ask! The moment your child is admitted to the NICU, your life seems to shift into crisis mode. Many friends and family generously offered to help – I’ll do anything I can, just name it! – but I wasn’t sure what I needed initially.

I found that offers to do very practical, simple tasks (bringing food, providing childcare for our older children, visiting to hold the baby at his bedside) were most helpful for us. Friends and family who were able to visit us on the unit were given a unique perspective on what life was really like with an infant in the hospital. Our visitors seemed to have an immediate compassion for our situation and they carried that into interactions after our child was discharged.

Simply being present by visiting was so helpful for us. We asked family to take our older children into their home for extended stays so we could focus our care on the hospitalized child. We asked those that were providing extended childcare for us to bring our kids to the hospital for a fun visit. We would take the kids to the playground at Doernbecher, go for a walk or ride the tram down for a treat at a nearby cafe. We asked other friends to come sit with our son so we could take a break away from the NICU and care for our older children for a day.

I quickly developed friendships with other NICU mamas who spent extended time on the unit. Sometimes, we would order meal trays at the same time so we could “have lunch” together or we’d escape the hospital for an hour or so to grab coffee or appetizers.

Our time spent together off of the unit were unforgettable. We could relate. We didn’t have to ask each other what it was like to have an infant in the NICU, because we already knew what it felt like. These “on unit” friendships provided a big help, because much like the pods in which we lived our lives, we didn’t feel isolated. We knew we weren’t alone. Often times, I found that family and friends helped buoy me up when I found myself sinking.

Every year, more than 5,000 babies in Oregon and Southwest Washington are born too soon. OHSU Doernbecher has joined thousands of teams across the country that support the March of Dimes‘ March for Babies. Interested in participating? Join Team OHSU/Doernbecher Tiny Feet!

Related reading
It’s a roller coast ride: One mom’s NICU experience
Once upon a time: Mae Lin’s Doernbecher story
A note of thanks from 8-year-old former NICU patient Elle

 

 

 

 

Preventing window falls: Tips to keep kids safe

Pediatricians often think of springtime as the beginning of “falling season.” Every year, 3,300 children younger than 6 fall from windows, according to the United States Consumer Product Safety Commission. Approximately eight of these falls will result in death.

In support of National Window Safety Week — April 3 to 9 — the Tom Sargent Safety Center at OHSU Doernbecher Children’s Hospital is sharing tips to prevent window falls:

  • Install it. Screens are not strong enough to prevent a child from falling. Installing window guards or stops is the best way to prevent window falls. Experts recommend leaving the guards and stops in place until children are 11 years old.
  • Move it. Prevent children from getting to windows by moving items they can climb on – including beds, dressers and shelves – away from windows.
  • Lock it. Keep windows locked. Only open the windows that children can’t reach. If you have double-hung windows, only open them from the top.
  • Teach it. Create a no-play zone by moving all toys and decorations away from windows. Teach children not to play in this area.

If a fall does occur: Don’t try to move your child; call 911 immediately.

“Sadly, we often think of spring as ‘falling season’ because the weather gets warmer, and people begin to open their windows. Children are curious by nature and can easily and quickly fall through an open window,” said Ben Hoffman, M.D., director of our Tom Sargent Safety Center. “Unfortunately, falls are the leading cause of injury hospitalization for children in the U.S. Parents and care providers should consider this and take necessary precautions to prevent potential falls. Using window stops and guards are an easy, cheap and very effective way to decrease the risk of serious injury.”

Ask about window safety toolkits at our Tom Sargent Safety Center (located just inside the OHSU Doernbecher lobby). For additional information about National Window Safety Week events and resources, visit ohsu.edu/childsafety or stopat4.com.

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