Archive for the ‘Cardiovascular’ Category

Five Question Friday: Elin Hooper

Friday, June 14th, 2013

 

What drew you to Children’s? When my daughter was born with a congenital heart defect, my life changed in numerous ways. I have a degree in communication studies, and I wanted to begin advocating for children. Health care does not start and stop in the patient room, and Children’s is an amazing example of complete patient and family care. We are involved in the community in a variety of ways, and I was drawn to Children’s because of how much I wanted to be involved in our various programs.

Elin Hooper

What do you love most about Children’s? I love how Children’s encourages and provides opportunities to become involved with our families and patients outside of our daily department. Through our Making Safe Simple events, fundraisers like HeartBeat 5000, and various groups that assist with community events, education, advocacy, and policy, I have had the opportunity to be involved with Children’s in an incredibly enriching way. It has been wonderful to work with children and families in fun learning environments, and to receive additional education and training for myself on how we can improve children’s health care.

On June 22, you’ll participate in the HeartBeat 5000. Can you tell us about your team and why you’re participating? My daughter’s team is Seven of Hearts and this will be our second year at HeartBeat, first as a team. I chose that name because her first heart surgery was on July 7. Last year it was just her and I who ran in the event. I decorated the jogging stroller with hearts and pushed her while I ran. It was amazing to see all the teams gathered together, sharing stories about their heart kids, and advocating for congenital heart defect awareness and research. I was also greatly impressed with all the informational booths at HeartBeat,  and I came away with a lot of helpful information and new friends. This year Maija and I will be running with a team of eight people. Every step of the event, each connection made, they are all so important to the heart community. We are advocating for our children and spreading awareness of the most common birth defect.

If you could travel anywhere in the world, where would it be? Since I was a little girl, I have wanted to travel to Norway, Sweden, and Denmark. I grew up celebrating various Scandinavian holidays, enjoying special foods, and surrounded by numerous photos and traditional decorations. The fjords in Norway and the coastline and Nyhavn canal in Denmark are at the top of my list for sites to see.

Is there a staff member you’d like to see featured in Five Question Friday? Send your suggestion to Brady, social media specialist, at Brady.Gervais@ChildrensMN.org.

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.

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

 

 

 

Support Children’s and Congenital Heart Defect Awareness Week

Wednesday, February 8th, 2012

Congenital Heart Defect Awareness Week is Feb. 7-14. The purpose of the week is to increase public awareness of childhood heart disease and congenital heart defects (CHD), the latter being one of the most common birth defects, affecting one in every one hundred children.

One of the most difficult aspects of CHD for parents is that often, their children don’t appear sick on the outside, which can be deceiving. This week brings hope to those parents, children and families that suffer from CHD.

At Children’s, we perform the most pediatric cardiac procedures in Minnesota. With more than 10,000 cardiac surgeries performed since the inception of our program, we are the largest cardiovascular program in the Upper Midwest.

Some CHD’s may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last twenty five years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHD’s to survive into adulthood.

This Valentine’s Day, do your part and have a heart. Here’s how you can help:

  • Make a gift to Children’s Hospitals and Clinics of Minnesota’s Cardiovascular Program. Give now.
  • Participate in the HeartBeat 5000 walk/run supporting cardiac care at Children’s. Register or donate now.

Julia throws the first pitch at a Twins game

Wednesday, July 20th, 2011

Julia Olejar, 4, one of our cardiovascular patients, got to throw the first pitch at a Twins game Monday night.

One of our cardiovascular patients, 4-year-old Julia Olejar, got to throw out the first pitch at Monday night’s Twins game! Julia’s parents, Kelly and Tim, and little brother, Anthony, watched proudly as she threw the ball to T.C. Bear, the Twins’ mascot.

Julia’s time in the spotlight was part of a check presentation for the HeartBeat 5000, an annual 5K run/walk that has raised nearly $1.5 million for cardiovascular services at Children’s over the last nine years. Before the game, Children’s received a check for $75,000 from the three presenting sponsors of HeartBeat 5000: Boston Scientific, St. Jude Medical Inc. and Medtronic.

Julia talks to T.C. Bear before she throws the first pitch of the game to him.

Julia with her family before the game.