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The trouble with toe walking

Monday, May 20th, 2013

Toe walking seems cute, at first.  But if it persists after a child is around 20 months old, it can be a problem.

Toddlers develop a heel-toe walking pattern about 20 weeks after they begin walking alone and should no longer be toe walking, said Nicole Brown, DPT. If left untreated, toe walking can lead to future injury or pain in your child.

“I think with little ones everyone thinks it’s adorable because you don’t know if it’s causing problems,” said Sara McGrane, whose daughter Molly started seeing Brown when she was 5 years old.

At her daughter’s check-up when she was 3, the primary care physician told her parents they needed to encourage her to stop walking on her toes, McGrane said. When she was 4, the parents were told again to keep working with Molly. It was at her visit when she was 5 that her primary care physician noticed she was toe walking and referred her to the Children’s Rehabilitation Clinic in Minnetonka.

“When she was little, it was cute,” she said. “She had always been a toe walker.”

Often, Brown doesn’t see patients until they’re 6 or 7 years old. There’s a misconception that kids will grow out of toe walking, she said.  Those who are seen at 2 or 3 years old have a better prognosis, and treatment time is generally shorter. She has treated patients as young as 18 months and as old as 13.

“We want to get these kids in earlier. By the time they’re 6 or 7, they can have structural damage to their foot,” she said.

Treatment varies and depends on the severity of the condition. If Brown can see a patient before there’s limited range of motion, she can re-train the child to resume a normal walking pattern through physical therapy, which on average lasts six months, she said.

If there’s limited motion in the ankle and the child is consistently toe walking, the child is put in serial casts or carbon fiber braces, she said. The serial casts are like a typical fiberglass cast for a broken leg. They’re taken off every week and put back on to accommodate the new range of motion that was achieved. Once a child’s motion improves, Brown uses ankle braces. Physical therapy is also part of the prescription and on average lasts about a year.

In Molly’s case, her heel cord was tight enough that she required bracing, Sara said. She met with Nicole for physical therapy for about 10 months.

“We were amazed at how quickly the process went,” Sara said. “We are big believers in the program.”

What is toe walking? Toe walking is a diagnosis in which a person walks with bilateral toe-to-toe walking pattern.  There may be a medical cause or it may be idiopathic in nature.

How does Children’s treat patients who toe walk?

  • We offer serial casting, orthotic intervention, and physical therapy treatment for treatment of toe walking.
  • Serial casting has been proven to be an effective intervention for toe walkers in treatment of tight heel cords to increase the range of motion and to also weaken the heel cord muscle to allow us to re-train the child’s walking pattern.
  • Children’s and Orthotic Care Services have designed a new type of solid ankle foot orthotic that mimics serial casts for treatment of toe walking.
  • The orthotic brace is a two-pull carbon fiber solid ankle foot orthotic.  The carbon fiber on the outer shell decreases the amount of multi-planar ankle motion that is available which mimics the effects of serial casting through increasing range of motion through the heel cords as well as weakening the heel cords but allows the child more flexibility in that they can take off the brace to shower or participate in certain activities.
  • After serial casting or carbon fiber bracing intervention has been completed, children are then placed in a two-pull plastic ankle foot orthotic to re-train their gait pattern to allow for a consistent heel-toe walking pattern.

Research in toe walking is underway at Children’s. We’re comparing outcomes in treatment of toe walking gait with carbon fiber orthotic intervention and serial casting.  Children are being enrolled in this study, and results have shown good outcomes.  This research study offers financial assistance as well as a team approach in the treatment of a child’s toe walking pattern.

If you would like more information about your child’s toe walking gait or to see if your child qualifies for this research study, please contact Nicole Brown, DPT at 952-930-8685 or by email at Nicole.Brown@ChildrensMN.org.

 

 

 

Posted in Patient Stories, Rehabilitation Services | No Comments »

How kangaroo care came to the United States: One mom’s journey

Wednesday, May 15th, 2013

Chris Clark was 23 weeks pregnant, on bed rest after her water broke, and had been given little hope of having a viable pregnancy.

A mom of three kids already and a natural protector, she wondered, if her child was born, was there something she could do to enhance his chance of survival? Bed rest gave Clark, who had a background in respiratory therapy, time to research.

She landed on an article in the magazine, Mothering, about kangaroo care in Colombia. Kangaroo care is the practice of holding your newborn baby skin to skin, which provides benefits to both the parents and the child. It helps premature babies develop. At the time – 1989 – kangaroo care wasn’t being practiced in the United States.

“I read the article through and thought, ‘Oh, my gosh, they’re holding babies skin to skin and the babies are doing better,’” she said. She contacted a researcher listed in the article, shared her condition with her and asked for medical literature supporting kangaroo care. The researcher sent the information overnight – she doubted Clark had much time before delivering.

Hours after getting the literature, Clark was rushed to United Hospital where she gave birth to Danny, who arrived at just 29 weeks on May 7, 1989. He was taken to the neonatal intensive care unit (NICU) at Children’s Hospitals and Clinics of Minnesota in St. Paul.

Danny, born on May 7, 1989

As soon as Danny was born, Clark started asking the neonatologist, Dr. Mark Mammel, if she could try kangaroo care.

“I was interested and also cautious. Maybe it’s growing up in the ’60s, but it seemed like a good idea. Parents holding babies – rocket science? No. But we all worried about the issue of temperature control, monitoring, airway obstruction, and so on,” Mammel said.

Clark persisted. “I asked every day if we could please, please try it,” she said.

Five days after giving birth on Mother’s Day, Clark held Danny for the first time. There were two crash carts and two resuscitation teams nearby – ready in case anything went wrong, she said.

“It was crazy. (Some of the staff) appeared terrified,” she said.

But the minute Clark started holding her son, terror and fear disappeared. She found only comfort and connection.

“It made me feel like his mom,” she said. “It was like I was in my own world with him.”

“Chris was very smart about the process. She initially saw the technique mentioned in a magazine…which I was familiar with as a fringe publication. It was not a great source for me to rely upon. Chris knew this!” Mammel said. “She gathered the actual medical literature – though there wasn’t much – and brought it to me and the group to review. Like all change in a NICU setting, a champion is needed to bring others along. I liked what I read – kangaroo care looked safe and probably beneficial, as well. So I became that champion, working with my partners and the nursing staff to pave the way for Chris to be the first.”

Clark holds Danny skin to skin

Initially, Clark spent about 30 minutes twice a day using kangaroo care.

Danny ultimately spent about nine weeks at Children’s. During that time, he needed nine blood transfusions, experienced numerous spells where he stopped breathing, and early on required a ventilator and 100 percent oxygen.

Prior to leaving, Danny required hernia surgery. Clark held her son for about 24 hours before the operation.  The anesthesiologist visited afterwards to tell her Danny was the “most relaxed baby” he had worked with in his years of surgery.

Danny just turned 24. He’s run a marathon, has no lung or sight problems and is a singer/songwriter, Clark said.

“I believe Danny is who he is because of kangaroo care,” she said.

Kangaroo care is now a standard practice at Children’s and beyond.

“I’m a fairly strong advocate and a fighter for what I think is best for my kids. The fact that it has helped other kids feels like this might be the purpose of my life and, It’s enough,” Clark said. “I was blessed to have enough people that believed in and supported us.”

Today marks International Kangaroo Care Awareness Day – a day we celebrate at Children’s.

“We had always seen ourselves as ‘family-friendly’ – trying kangaroo care was a way for us to really walk the walk. We became recognized around the country for this, though it was never a focus of our research efforts. Others took on that task,” Mammel said. “Today, all our families benefit from this practice, which is as routine as turning on the lights in the morning.”

Posted in NICU, Patient Stories | 5 Comments »

Mason’s story: How to cope when your sibling is the patient

Tuesday, April 16th, 2013

By Mason Stoltz

My brothers and I were not expecting to be without a mom and dad for 99 days. But that’s sort of what it felt like when my sister was born extremely prematurely. Suddenly, our world was turned upside down and we had to take on a lot more responsibility than we were used to. When my parents weren’t at work or asleep, they were at Children’s. So, as you can imagine, it dramatically changed things for the three of us kids who were at home.

Mason holds his sister, Katie, for the first time.

Here are some of the ways we learned to cope with our “new normal”:

  • My older brother met with a counselor at school. This gave him someone to talk to at school who really knew what was going on in our family. This person was able to offer suggestions on how to deal with stress and still stay on top of things at school.
  • We read books as a family that helped us all to understand what was going on in the neonatal intensive care unit (NICU) where my sister was and a little bit more about the challenges she was facing.
  • We visited Children’s often and took advantage of the awesome services that are designed for siblings and family members. For example, did you know there is a Sibling Play Area at the Minneapolis location loaded with fun toys and activities for siblings to play with? It is open to siblings of a Children’s hospital or clinic patient, ages 2 years and up.  Siblings can be checked in for up to 1 ½ hours, twice a day. The staff there was super nice and had really great activities and crafts for us to do.
  • We would make things for my sister.  All patients at Children’s have their own private room and it is meant to be their “home away from home.” We had a lot of fun drawing pictures and making get well posters that we could hang in my sister’s room. I hope it cheered her up and let her know we loved her. I think the nurses and doctors were able to get a better insight into our family by personalizing her space a bit.
  • During my sister’s hospitalization, we had a plastic box at our house that we pretended was an isolette (like the one my sister was in at the NICU). My 4-year-old brother liked to pretend he was a doctor and took care of his teddy-bear patient, the way the doctors and nurses were taking care of my sister. If you want more ideas about how to creatively and simply teach kids about the complex issues and procedures that happen at a hospital, talk to a Child Life Specialist. They are a wealth of information and some of the most valuable people at the hospital, in my opinion!
  • I liked having my own picture album of my sister that I could show to my teachers and friends. It almost became a morning ritual in my classroom for me to share the latest developments with my sister. It felt nice to be able to educate my friends about her situation and I felt their support as a result.

I hope these suggestions might come in handy for you if you have a sibling in the hospital. Just remember, even though your sibling might look different in the hospital, they are really the same person.The more you can do to still interact with them the way you would if they were at home, the more comfortable you both will feel. Many times you can still play a game, watch a favorite show, share jokes over the phone, make paper airplanes, do a craft, celebrate a birthday, and make a memory even while they are going through something difficult. You can be a part of their prescription back to health.

Mason, 13, is a member of our Youth Advisory Council. 

Posted in NICU, Patient Stories, Youth Advisory Council | 2 Comments »

Patient to patient: How to manage school work when you’re hospitalized

Tuesday, March 12th, 2013

Olivia, Youth Advisory Council member

By Olivia

I’ve been a patient at Children’s my entire life (17 years). I’m also on the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. This is my eighth year as a part of that. YAC is a group of kids and teens who are either patients at Children’s or family to patients here. Our job is to make the hospital a better place to stay and to heal. Because of our experiences, we all understand that the hospital is not where anyone wants to spend their time, but we try to make it a little better and more comfortable.

I was born early at 29 weeks and suffered from brain bleeds at birth. This caused me to develop a condition called Hydrocephalus, which is also known as water on the brain. Hydrocephalus affects everyone differently. It mainly causes headaches, but the headaches are caused by pressure in the brain, which, if not corrected can lead to brain damage.

Because of this diagnosis, I’ve had to undergo over 70, yes 7-0 brain surgeries (all at Children’s) to attempt to fix or at least help the complications from the condition. There’s currently no known cause for Hydrocephalus, but the primary treatment is the placement of a shunt. A shunt is basically tubing that is placed in the brain, which drains the fluid from the brain to the stomach area, which relieves pressure and makes the headaches less painful. With Hydrocephalus, you’re basically looking for a happy medium of pressure (not too high or too low) all the time. With more than 70 surgeries in just over 17 years, that amounts to a lot of time in the hospital.

As a veteran patient and a member of YAC, my job is to try to help kids who are or have been in the hospital. By writing this blog post, I hope to help with something other than just “getting better” or “enjoying your stay.” I want to address something that is very important and also very difficult: Keeping up with school when you’re absent because of health issues. Whether that’s because you’re an inpatient or just don’t feel good enough to be at school, staying caught up can be so hard. I’m a junior in high school, so I’ll mainly address high school students. But my advice applies to those in elementary and middle school.

Be proactive: If you know you won’t be in school, talk to your teachers ahead of time. ALWAYS keep teachers updated, even if it’s just a quick email about little stuff. They’ll be much more willing to work with you if they’re kept in the loop. Let them know what’s going on, why you can’t be in school, and when you think you’ll be returning to school. Share as much as you’re comfortable with.

Plan ahead – if you can: Depending on how serious your medical situation may be, you may not be able to do homework while in the hospital. If you know that’s the case, make sure to plan for that and make a plan for when you will do the work. Having your teacher help you create a plan may also be helpful – for both of you.

Talk to your classmates: If you know friends are in your classes, they can gather homework for you and even tutor you if needed. That way, when you return you kind of know what’s going on.  This is how I’ve survived 11 years of schooling and 17 years of hospital stays.  Everyone’s situations are different, so do what works for you.

Prioritize the work: It totally depends on the situation on whether you can complete homework in the hospital. It depends on how you feel, how hard the curriculum is, how much medication you’re on and how busy you are with treatment while there. When hospitalized I try to prioritize when I feel at least somewhat decent. If there’s homework that I find easier or won’t take long to complete, I try to get that done during my stay (and sometimes even get help from my nurses)! But if there’s homework I need help on, or don’t feel up to doing, I try to schedule a way to do it (and get help on it) once I’m discharged.

Communicate early:  If you’re unexpectedly hospitalized (which has happened to me plenty of times), it can be really frustrating and stressful, just from a medical standpoint plus you have school to worry about, too. At the beginning of each semester or when I get new teachers, I make sure I have their contact information. That way if and when I need it, I have it. If I’m not expecting to be admitted but am, the first thing I do (once I feel good enough) is email my teachers. Most teachers are very willing to help you out. Once your teachers know, you can figure out a plan together and everything will be just fine. Education is very important, obviously, but I’ve learned that the main thing is to always focus on getting better before anything else.

Start early:  If you have a chronic condition and think you might be hospitalized often, my biggest piece of advice would be to figure out a system while you’re young. Especially before high school if you can, as classes get harder, so does staying up with everything.

Good luck with everything, whether it’s educationally, medically or otherwise, and remember you can do anything you put your mind to. Don’t let anything (like being in the hospital) stop you.

Posted in Neurology, NICU, Patient Stories, Youth Advisory Council | 4 Comments »

Double trouble: Twins suffer concussions 24 hours apart

Thursday, March 7th, 2013

Karen Schlossmacher Smith, an RN, was working on the critical care floor at Children’s Hospitals and Clinics of Minnesota when she got a phone call. Her daughter, Adrianna, was in the Emergency Department with a concussion. She had gone in for a lay-up at a basketball tournament when she fell to the ground and a fellow player stepped on her head.

It was 13-year-old Adrianna’s second concussion. She was treated and scheduled for a visit at Children’s Concussion Clinic for follow-up care.

Twenty-four hours later, Schlossmacher Smith got another call while at work. This time, it was for her daughter Michelle, Adrianna’s twin. Michelle had suffered a concussion during the same weekend basketball tournament. She took a block, hit her head and momentarily blacked out.

“It wasn’t even funny. I think I was in a little bit of shock and disbelief after the second call came,” she said.

Adrianna and Michelle

Twin girls. Two concussions. One day apart. Unlikely? One might think so. But, this wasn’t their first experience with back-to-back injuries. They once broke their hands 18 hours apart and ended up with casts on opposite hands, Schlossmacher Smith said.

A concussion is a type of brain injury that changes the way the brain normally works, according to the Centers for Disease Control and Prevention. It can be the result of a bump, blow, jolt to the head, or from a blow to the body that causes the head and brain to move rapidly back and forth.

Concussions can have a more serious effect on a young, developing brain and need to be addressed correctly and quickly.

“It takes a child or teenager three to four times longer to recover than an adult due to the rapid brain growth and development,” said Mary Dentz, a nurse practitioner who helped treat Adrianna and Michelle. “If the brain is not given sufficient time to heal from the injury before a child returns to regular activities, the recovery time becomes even more prolonged. Children and teens also experience more severe symptoms and neurological disturbances compared to adults.”

Symptoms from a concussion include having headaches, being sensitive to light and noise, feeling dazed, and being forgetful – to name a few. Adrianna experienced difficulties with vision and balance; Michelle had sensitivity to light and sound, Schlossmacher Smith said.

At Children’s newly launched Concussion Clinic, where Adrianna and Michelle were treated, patients receive a medical evaluation as soon as possible after the injury, which is usually within a week. The clinic, which has a multidisciplinary team, offers physical therapy, audiology, pediatric neurology, neuropsychology, advanced imaging capabilities and an active research program.

Between their Emergency Department visits and continued care, Adrianna and Michelle were seen a total of 15 times between them at Children’s, Schlossmacher Smith said. Physical therapy played a significant role in their recovery.

Children’s physical therapists see every concussion patient as early as 10 days post injury to help the patient return to sports safely, said Elaine Walin, a physical therapist who worked with the twins. An occupational therapist may see a patient if he or she has challenges more than a month after the injury. Therapy aids patients with their visual acuity, balance and tolerance to exertion, Walin said.

Patients return to school and regular activity only when they get an all-clear from a trained health provider. In Minnesota, young athletes who show signs of a concussion must be sidelined until they get a medical all-clear.

That law is important, Dentz said.  “Doing too much too quickly after a concussion can make the concussion symptoms worse and prolong recovery time,” she said.

Contact activities place a child or teen with active concussion symptoms at risk for a second concussion, she said. Having a second concussion before fully recovering from the first one is dangerous and can result in prolonged recovery time, lifelong problems with thinking, memory, processing or balance, and, while rare, death from second-impact syndrome (SIS).

Sports and recreation-related activities account for a majority of concussions. At Children’s clinic, 43 percent of the patients seen suffered concussions while playing hockey.

Sports play a big role in Adrianna and Michelle’s lives. With Adrianna so young and having already suffered two concussions, Smith worries about what will happen if she receives a third concussion.

“I think we will need to call it quits for contact sports,” Schlossmacher Smith said.

There’s not a lot of data on outcomes for children and teens after multiple concussions, but this is currently being studied, Dentz said.  Prolonged recovery time and more severe symptoms occur with each subsequent concussion, but the long-term effects aren’t clear yet.

Adrianna and Michelle continued going to school, but they took a break from physical education classes, music and testing, Schlossmacher Smith said. They took naps in the nurse’s office during gym and music classes, which was what allowed them to continue going to school. At home, screen time, such as watching TV and texting friends, was limited.

“The goal is to allow the brains to rest,” Schlossmacher Smith said. “They look fine on the outside, but definitely felt the effects in different ways.”

Adrianna and Michelle, who are also varsity divers and swimmers, only returned to play in their final state basketball game this past weekend.

The family appreciates the care they received from Dentz and Walin, who kept the girls positive and accountable for their own recovery, Schlossmacher Smith said. The girls’ Roseville coaches, teammates and other families supported them, knowing the importance of a slow recovery even when it impacted the team and resulted in having to pull out of games.

“They understand the long-term consequences,” Schlossmacher Smith said.

Posted in Neurology, Patient Stories | No Comments »

Yesica’s story: Living with diabetes

Tuesday, February 26th, 2013

Yesica

When Yesica started having to go to the bathroom frequently and was always drinking water, her family didn’t think anything was wrong.

Then, Yesica’s jeans stopped fitting.

“When I tried on some jeans, they fell right off,” said Yesica. “That’s something that’s not normal for my age. I should be gaining [weight], not losing.”

That’s when her mom took her to a doctor, and Yesica was ultimately referred to Children’s Hospitals and Clinics of Minnesota. Her symptoms were early signs of Type 1 Diabetes — a chronic disease in which there are high levels of sugar in the blood. While it’s often diagnosed in young children, it can be found at any life stage. One in 400 people under 20 years of age has diabetes, according to the American Diabetes Association.

“I had many questions. I was kind of nervous because I didn’t know what was going on and what I was supposed to do,” Yesica said. “It was a tough experience.”

The diagnosis has changed her life, and, most noticeably, her daily routine.

She injects insulin, which helps keep her blood sugar at a normal level, six times a day every day, said 11-year-old Yesica. She leaves class twice a day to see the school nurse and have her blood sugar checked. On days she’s not feeling well, she sees the nurse more often.

“It’s hard,” she said.

“Diabetes needs constant attention,” said Dr. Angela Tridgell, an endocrinologist at Children’s McNeely Pediatric Diabetes Center. “It’s something you can never take a vacation from.”

Those with Type 1 Diabetes often have to check blood sugar levels four to six times a day and take insulin four to six times a day, Tridgell said.

Children’s takes an aggressive and comprehensive approach to treating its patients, she said. They come in for at least four visits annually. The visit involves seeing a physician or nurse practitioner for a physical exam and analyzing blood sugar results to determine whether a change in insulin dosage is needed. A patient may also meet with a diabetes nurse educator, dietitian, psychologist or social worker – depending on needs.

“Our goal is to help a child be as normal as possible and be as healthy as possible,” Tridgell said.

Though the experience has been challenging for Yesica, she said she has found support by joining Children’s Youth Advisory Council where she can connect with other patients.

“I’ve learned that I should appreciate life and that I should stay strong no matter what,” Yesica said.

Posted in Diabetes/Endocrinology, Patient Stories | No Comments »

Where the heart is

Friday, February 15th, 2013

Mindy, several months pregnant with her second child, wore a used, silver bangle bracelet a stranger had given her: “With God all things are possible – Matthew 19:26.” Even though she instinctively knew something was terribly wrong with her pregnancy, she was sure her unborn child would be okay. She would have bet her life on it, she said.

She would soon learn that she was right – about everything. Something was wrong. Charlie had a complex congenital heart defect. Specifically, he had transposition of the great arteries. Dr. Amarjit Singh, a now retired pediatric cardiologist at The Children’s Heart Clinic at Children’s Hospitals and Clinics of Minnesota, diagnosed Charlie after a series of ultrasounds and wrong answers from other doctors. Mindy was right about something else, too. In the end, everything would turn out okay with her son.

Baby Charlie, hospitalized at Children's, with mom, Mindy, looking on

Charlie was born in 2005 at Abbott Northwestern Hospital. Immediately after entering this world, he was rushed through a quarter-mile underground tunnel to Children’s. His oxygen levels were dangerously low. Once at Children’s he immediately had an emergency surgical procedure known as a septostomy. A septostomy creates a hole between the heart’s chambers and allows for oxygen rich blood to mix within the heart, thus allowing oxygen to reach the body.

Following the septostomy, it was discovered that Charlie had a stroke. It’s unclear when it occurred – either during resuscitation following his birth, or during the septostomy, Mindy said. In the following days, he worked to recover from the traumatic events on the day of his birth. Eventually he became stable enough to undergo a complex lifesaving open-heart surgery.

Mindy has recorded this story for a book, “Embracing Charlie.” It’s a story about love, strength and faith. The love she and her husband shared as they built a family. The strength they showed when they learned their son had a heart defect. But mostly, the story is about Mindy’s faith despite the challenges she faced.

She is honest, giving outsiders a peek into her world as she and her husband, Paul, searched for answers and, when they got them, how they prepared for a son with a heart defect.

Mindy, who spent three years off and on writing, said she was inspired by a connection she made with a Boston family whose son also had transposition of the great arteries. As she prepared for Charlie’s birth, the family sent Mindy a photo of the boy. That photo gave her more reassurance than any doctor could, she said.

“When I first started thinking about writing, I wanted to be that to somebody else,” she said. “[The photo] gave me a sense of hope, to see what our life could still look like.”

Paul, Mindy, Charlie and Sophie

After several weeks in the hospital recovering from open-heart surgery, Charlie went home. Developmental milestones were delayed. He received speech, occupational, and physical therapies to address his challenges from the stroke and made great progress, Mindy said. For a long time, he favored his right side. Today, he’s right-hand dominant, and you would be hard pressed to notice that anything had ever happened to him.

He continues to have follow-up visits with a neurologist. He also goes to the Heart Clinic for regular check-ups. Future surgeries are possible. “He may need something, but in the scheme of heart surgeries, he’s been through the worst of it,” she said.

Mindy has “absurd gratitude” for her son’s care team, which included surgeons Dr. Francis Moga and Dr. David Overman. And she’s grateful for Dr. Singh for his incredible commitment to his patients and for giving her answers when others couldn’t.

“As a pediatric cardiologist, one of the joys of our job is that we get to see the babies with very complex health issues grow up into wonderful young people who still love us in spite of the pain and discomfort that we may have put them through,” said Dr. Singh. “The other is that we meet some incredible families. Charlie and his parents are one such family. I was very fortunate to care for Charlie and to know his parents. They are extraordinary people. It was my privilege to see him grow up to be happy loving child.”

Dr. Singh and Charlie

Charlie, 7, is delightful, Mindy said. He is an extrovert in an “oddly mature way.” He’s obsessed with artists Claude Monet and Vincent van Gogh.

“It’s like there’s an old man trapped in there,” she said.

Mindy often thinks back on the day she received the bracelet from a stranger and the faith that came with it. That day, she had prayed for a sign that everything would be okay.

She was working at a dental clinic when a colleague approached her with the bracelet. A patient had given it to Mindy’s colleague after she asked where she had gotten it because she wanted to get something similar for Mindy. The patient removed the bracelet and urged the colleague to give it to Mindy.

“I asked Jesus to show himself to me, and he responded, with jewelry,” she said.

She no longer wears the bracelet. She gave it to another mother of a newborn cardiac patient while Charlie was at Children’s.

Charlie

The experience of her son’s heart defect has taught Mindy to “embrace the darkness and troubles.” There’s growth in that, she said.

“It changed our lives for better. I couldn’t have seen that at the beginning,” Mindy said. “It gave the gift of perspective.”

To read the first chapter of Mindy’s book, check out her blog.

Posted in Cardiovascular, NICU, Patient Stories | 10 Comments »

A heart mom is born

Thursday, February 7th, 2013

By Elin Hooper

Elin and Maija

Maija Jean was born on July 2, 2009, after an induction at 40 weeks and 3 days. She weighed 8 pounds, 4 ounces and scored an eight and nine on the Apgar test. It felt like a textbook pregnancy, labor, and delivery with a little Pitocin thrown in. After Maija’s birth I was filled with immense joy and love. Maija made me a mom. From that point forward, I would be a protector, a teacher and a friend.

A nurse took her measurements, weighed her and stamped her feet. I hear a murmur. Usually it is nothing. Don’t worry.

Our first night went smoothly. Bright and early the next morning, her pediatrician checked on her. I hear a murmur. Usually it is nothing, don’t worry. I’m going to schedule a heart ECHO just to make sure.

When the pediatric cardiologist came knocking on the door, I became concerned. This was no longer a textbook birth. I hear a murmur. Usually it is nothing, don’t worry. I am going to have your daughter admitted to the Neonatal Intensive Care Unit (NICU) just to be sure. We’ll run another ECHO in the morning.

After the cardiologist left, I was discharged and my daughter was taken to the NICU. My saving grace was the graciousness the staff blessed upon me by letting me stay one more night as an “invisible patient.” The next morning after the ECHO we were sent home, together. Her discharge included strict instructions to come into the cardiologist’s office first thing in the morning for another ECHO. But I didn’t worry at the time. These things were usually nothing.

I could never have imagined experiencing the kind of emotional pain I felt just four days after giving birth. Numb from the waist down, bursting with love from the waist up. I had just given birth to my daughter. It was the most beautiful and intense moment of my life. I held her close and whispered my love and admiration for her. What I did not know upon the doctor placing her in my arms was that I also became a heart mom.

The murmur was pulmonary valve stenosis. Her lungs weren’t getting enough blood, and she needed surgery. That is when my whole world shifted.

Before Maija’s birth I had no idea she had a Congenital Heart Defect (CHD). Ultrasounds didn’t detect pulmonary valve stenosis, atrial septal defect or right ventricular hypertrophy.

I had skipped the chapters in pregnancy and baby books that covered any type of special need. After her diagnosis, my life changed. I became a stay-at-home mom armed with anti-bacterial lotion, wipes and sprays. Maija sat in a plush cart cover at the store. The job as protector took on a much greater meaning than I was expecting. I quickly became one of those helicopter moms.

Maija

Now, three-and-a-half years later, I am a proud heart mom. And the leash is a little bit looser. Maija is in preschool while I work outside the home, and she enjoys ballet classes throughout the week. We no longer use a cart cover.

Though her surgery at 5 days old to fix the restricted valve was a success, she now has significant pulmonary valve regurgitation. The flow of blood through her valve leaks back into her heart. A similar flow takes place in the hole between her atria. The right ventricular hypertrophy is still a concern. She will need surgery again someday, and even though I will hopefully know in advance, I’m still scared. The idea of your baby, no matter their age, going under anesthesia and having heart surgery is terrifying.

Congenital heart defects affect tens of thousands of babies every year. They are the most common birth defect. As a heart mom, I have a responsibility to share my story – my daughter’s story – with others. She participates in fundraising and awareness events with me, and I am endlessly reading and sharing news with my family and friends. As we enter Congenital Heart Defect Awareness Week, I encourage others to share their stories as well. We can all help our heart babies, young and old, together.

On July 7, 2009, I handed over my baby to the surgeons. It was the single most terrifying moment I have experienced. Her life, and my heart, were in their hands.  We now celebrate our Heart Day every year on July 7. We celebrate her life and her heart. A beautiful beating heart with a special extra whoosh to it.

Maija, 3, takes ballet lessons

Elin

 

Elin Hooper is a heart mom to 3-year-old Maija Jean. Elin works at Children’s Hospitals and Clinics of Minnesota as a Health Unit Coordinator and is actively engaged with the community on Twitter. Follow her here. 

 

 

 

Posted in Cardiovascular, Guest Post, Patient Stories | 9 Comments »

Ally’s journey: How pet therapy helped me heal

Thursday, January 17th, 2013

By Ally Gillen

I’ve had a very eventful 14 years. My life has been full of happy, exciting and life-changing events that have made me who I am today. One event stands out that has changed my life the most.

When I was 10, I was sent to Children’s Hospitals and Clinics of Minnesota with mysterious symptoms that my pediatrician could not figure out.  At Children’s I saw many doctors including an infectious disease specialist and a rheumatologist. After many tests and procedures, the rheumatologist determined I had juvenile dermatomyositis. It’s a rare auto immune disease that affects the muscles and tissues of your body. My case was one of the worst my doctor had ever seen and from that point on, I started my 49-day stay at Children’s in St. Paul.

Karlos, the pet therapy dog, visits Ally.

It was no fun lying there in the hospital bed 24 hours a day, seven days a week.  I could not move (my muscles were so inflamed) and that made it even less fun because all I could do was watch TV. By the second day, I felt like I had pretty much watched everything.  Luckily, many people came to visit me including therapy dog teams, volunteers, and my family. Just seeing their faces made my days easier.

I loved visits from pet therapy dogs the most. I looked forward to their visits every day.  I missed my own dog from home so much and their visits helped me to miss her a little less. A special occupational therapist (OT) at Children’s learned how much I loved seeing the dogs and started to use them in her therapy sessions with me. At first all I could do was pet the dogs, but as my muscles got stronger, I would brush them, dress them, paint their toe nails and play tic-tac-toe on their backs. It was so much fun; I hardly knew I was working on just the things the OT wanted me to learn. The dogs helped me to get better, and I loved working with them.

We were so inspired by how much the therapy dogs aided my recovery that my family began training our family dog, and we now have a therapy dog of our very own!  In March 2011, our dog Angel passed her Pet Partners certification and now visits Children’s each week with my mom. This summer I got a new puppy of my own that I’m training to hopefully be our next therapy dog. After I finally left the hospital, I still got to work with a therapy dog in my OT sessions as an outpatient. I had fun doing obstacle courses and many other activities with the dogs.  It was so much fun that I looked forward to my OT sessions, and never once told my mom that I did not want to go.

Ally, Angel and Mickey

Throughout my life, there have been joys and challenges. During the rough times, I have always found a way to make the best of them.  I know that with the support of my family and friends I can get through anything.  As I get older I will carry the lessons I have learned throughout my life with me and share them with all the people I meet along the way.  I am hopeful that I can become an OT myself someday and work with therapy dogs and their owners to help other kids just like me!

Ally, 14, is a Youth Advisory Council member at Children’s. You can hear her talk more about pet therapy here. Learn about our Pets Assisting with Healing (PAWH) Volunteer Program here.

Posted in About Children's, Patient Stories, Youth Advisory Council | 2 Comments »

Mark’s story: Making my voice heard

Wednesday, January 2nd, 2013

By Mark Olson

Mark, middle, cuts the ribbon at the opening of the new teen lounge.

I was born with transposition of the arteries in my heart and had surgery to repair them when I was four days old. In fifth grade, I had another surgery to repair a narrowing of my aorta. And in November 2010, I got a pacemaker. It’s possible I’ll have another surgery in a few years to make my aortic valve stronger because it’s expanding and beginning to tear.

I’m only 18.

Given the number of medical issues I’ve faced during my short life and still face, I’ve learned how important it is to advocate for yourself in the hospital. It’s important for a few reasons. First, your doctors and nurses then know what’s going on with you and can help you. Second, you can help the hospital itself improve.

One of the ways I advocate is by participating in the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. I’ve served on YAC for three years. I love Children’s, but I joined YAC because I thought I could make the hospital even better.

I believe I’ve made a difference in the lives of patients at Children’s. One way I’ve done that is by helping with the creation of the new teen lounge on the Minneapolis campus.

At meetings, I’m not one to be shy. I’m always asking questions. When I know a friend is going to the hospital, I ask him or her to give me feedback. How was the visit? Could Children’s have given better care? How? I bring the answers back to YAC.

Someday, I see myself advocating for others. And it’ll be at the bedside. I’m interested in going to medical school and specializing in cardiology. After my years of experience being a patient and a YAC member, I think I’d bring a unique perspective to the medical field.

I often tell people, “If you want something done, the only way people can know you want something done is to tell them. You’re the only person stopping something from happening.”

Mark Olson, 18, is a Youth Advisory Council Member at Children’s Hospitals and Clinics of Minnesota and a patient.

Posted in Advocacy, Patient Stories, Youth Advisory Council | 2 Comments »

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