A Mission to Ecuador for Pediatric Heart Surgeon

By Meghan Scalea

UMMC Communications Account Leader

Sunjay Kaushal, M.D., Ph.D., associate professor at UM School of Medicine and director of pediatric cardiac surgery at UMMC, recently returned from a medical mission to Ecuador, where he performed life-saving heart surgeries on nearly 20 children who would have died without surgery.

 

Dr. Kaushal, a father of two, is a huge advocate for kids. This medical mission to Guayaquil, Ecuador, was his fifth trip with the International Children’s Heart Foundation (ICHF), a group dedicated to providing supplies, training and surgical resources to care for underprivileged children with heart disease in dozens of countries around the world.

According to the ICHF, 1% of the world’s population is born with heart disease, only about one-third is diagnosed, and even fewer receive life-saving heart surgery. Congenital heart disease is the most common birth defect in the world.

“There is a huge surplus of kids with congenital heart disease,” says Kaushal. “Traveling with this group allows me to provide free health care for children who wouldn’t otherwise be treated.”

Joining him in Ecuadorwas UMMC certified surgical technologist, Nicolette Dupuis, who supports Dr. Kaushal in his pediatric heart surgeries in the OR in Baltimore. This marked Dr. Kaushal and Ms. Dupuis’s third medical mission trip together. During their week inEcuador, they worked with cardiologists and intensivists from hospitals around theU.S. in the sparse operating rooms.

 “Part of our job while we were inEcuadorwas to teach the local medical professionals to do congenital heart surgeries like we do, but on a smaller level,” says Dr. Kaushal. “Our day began at 7:30 am, and we’d operate until 9:00 pm. We staffed the ICU 24/7 during the time we were there to make sure those children had the post-operative care they needed.”

Dr. Kaushal is the only board-certified congenital heart surgeon inMaryland, giving him a unique expertise in performing surgical procedures on babies just a few days old who were born with heart disease, children with congenital and acquired heart disease, and adults living with heart conditions they developed as babies, known as adult congenital heart disease.

Dr. Kaushal performs the most complex pediatric heart surgeries available today, including surgeries for babies with hypoplastic left heart syndrome, Tetralogy of Fallot and ventricular septal defect, and those in need of pulmonary valve replacement. He is also preparing to open a clinical trial that will use a baby’s own stem cells to regenerate the underdeveloped portion of their heart caused by hypoplastic left heart syndrome.

We invite you to learn more about what Dr. Kaushal and the Children’s Heart Program at UMMC are doing for children within the Mid-Atlantic region.

Pediatric Leukemia Patient Raises Funds for Second Year in a Row

Brasen

Brasen VonMoose-Lemin

Editor’s Note: Brasen’s second fundraiser was a success –he raised $2,756 for the University of Maryland Children’s Hospital! See pictures of Brasen presenting the check to UMCH pediatric oncologist Dr. Teresa York.

My name is Brasen VonMoose-Lemin. I am a 7-year old who has won the battle with leukemia. I am planning my second fundraiser for my hospital, the University of Maryland Children’s Hospital on May 19. Last year I raised over $1880 and this year I’d like to raise even more than that (see my story from last year).

I plan to sell lemonade and other sweet treats with the help of my family members.

My plan is to raise money to help children who are fighting cancer. I will continue this journey every year until they find a cure and no child will have to suffer through the pain, hospitalization, chemo, spinal taps and so much more.

My fundraiser and raffle will take place on May 19th 10 a.m. to 2 p.m. at my school parking lot, George T. Cromwell Elementary School at 525 Wellham Ave, Glen Burnie MD. The rain date will be May 20th.

A few local grocery stores will donate baked goods. In addition we will have several raffles including movie basket, Thirty-One basket, Scrapbook Basket, Longaberger, and more. I also plan to have some special characters arriving including balloon characters, and we’ll also offer face painting and glitter tattoos.

This year’s event is extra special to me since I have been chemo-free since November 2011. We are hoping you will come out and join my cause in the fight in helping children with cancer. Checks will be accepted and can be made payable to the UMMS Foundation.

For information regarding the fundraiser or the University of Maryland Children’s Hospital, please contact Jennifer Summers at 410-328-9546 or jsummers@umm.edu
You can also visit the Children’s Hospital Web site at www.umm.edu/pediatrics.

How to Raise a Veggie-Eating Kid

By Faith Hicks, MS, RD, LD/N, CSP

Senior Clinical Dietitian

Editor’s Note: A version of this article appeared in The Baltimore Sun 03/07/12, in the Taste section and online.

How is it that some kids will eat whatever is put in front of them, while others live on hot dogs and chicken nuggets and have a phobia for vegetables, especially anything green?  As adults, we know that we ourselves probably should be eating more fruits and vegetables, and we would like to raise our kids to have healthier eating habits and a varied diet right from the start.  There are a number of ways parents and other adults can promote good eating habits from early childhood and throughout the teen years.

Make a regular “date night” – a family dinner date night, that is!

One of the best ways of promoting good eating habits in children is to make eating meals together a priority. This is something that often gets lost in the shuffle of soccer practice and scout meetings, but try to identify at least one or two nights a week to have dinner as a family.  Children who are raised having regular family meals generally consume more servings of fruits and vegetables and develop a liking for a wider variety.  They also tend to have a diet lower in fat and are less likely to become overweight than children from families who eat on the run.  From the start, toddlers mimic their parents’ eating habits.  So a parent who includes fruits and vegetables at mealtimes sets the example that these foods are tasty and that consuming them is the norm and is expected.

There are other important benefits of having meals as a family. Children whose families dine together regularly develop better language skills.  During dinner conversation, they are exposed to a larger vocabulary. They become adept at participating in a higher level conversation.  Another benefit of family meals extends into the teen years, teens that regularly have dinner with the family get better grades and are less likely to try drugs, tobacco, and alcohol.  It seems that mealtimes help foster a sense of connectedness within the family and when parents are tuned into their teens, teens are less tempted to dabble in risky behavior. 

Lighten up and don’t turn mealtime into a “pressure cooker”

Another way of fostering a varied diet is to offer new foods several times and without undue pressure.  It may take more than several times trying a new food for a toddler or preschooler to accept it, so don’t give up after the first try! Place a small portion of each food that you are having on your child’s plate.  When they see that you eat it, the expectation is set that they will like it, too.  Beware of trying too hard to persuade a child to eat because this might backfire! It can send the message that the food item is not very appealing.  For example, if a child is rewarded for eating green beans by getting a cookie, the parent sends a message that green beans are yucky.  The child may think “that must not taste very good if I have to be bribed with treat.”  Rather, make a light-hearted request for the child to just to try “just a bite.”

Involve kids in food shopping and preparation.

Children and teens are more interested in foods they have selected, prepared, or even grown at home.  Wander the produce section of the grocery store with your child and let him choose a new vegetable or fruit to try each week.  Buy a colorful, child-oriented cookbook to provide ideas for foods you can prepare together.  Cooking together provides an opportunity to learn other skills, such as fractions.  Even small children can be safely involved in cooking activities such as washing produce or putting toppings on a veggie pizza. Consider planting even a small garden and check out seed displays with your child. Seed companies sell kid-friendly vegetables in packets bearing very appealing pictures. Children who are drawn to miniature things may be fascinated by picking cherry tomatoes or pulling from the ground the baby carrots planted earlier in the spring. Brussels sprouts might be a little more fun to eat once you have seen how they seem to march in lines as they grow from the plant’s stem! 

In summary, the key to raising a “good eater” is having fun with food together, right from the start.

Snowpile: Santa Sets Up a Satellite Workshop at the UM Children’s Hospital

By Shannon Joslin, MS, CCLS

Child Life Manager
University of Maryland Children’s Hospital

Being in the hospital at any time is a challenge, but especially so for young patients during the holidays.  Children miss their family, friends and their traditional holiday activities.

Here at the University of Maryland Children’s Hospital (UMCH), it’s a little easier thanks to some generous people in the community — grateful families of current and former patients, companies, local businesses and other individuals who open their hearts and checkbooks to allow the Child Life Program to host the second annual Snowpile event for children and families in the hospital over the holidays.

The Child Life team sets up a toy workshop from Dec. 21 to Dec. 23 each year and invites parents of children who are in the hospital over the holiday to come shopping (for free) for their child.

In addition to the toys, every parent is able to “stuff a stocking” full of goodies for their child in the hospital as well as stockings for any siblings at home so they don’t feel left out while their brother or sister is hospitalized.

We have volunteer gift wrappers to help with wrapping the gifts and we have coffee, cookies and snacks for parents so they can take a moment for themselves in the midst of their child’s hospitalization.  Last year, we had Girl Scout cookies donated through a troop whose leader works at UMMC. This year, we got donated food and drinks from the Au Bon Pain restaurant in the hospital lobby and The Penn Restaurant nearby onPratt Street.

Parents either take their gifts with them if there’s a chance their child is being discharged before the 25th, or they leave them with our Child Life team for delivery on the 25th.  Parents who have participated have commented on how this was such a help, for two reasons — finances are usually tight and their time to go shopping is limited because they want to stay at the hospital with their child.

If you would like more information about the Child Life Program at UMCH or how to help support children and families in the hospital, please visit our Child Life Web site.

Blue Holiday Service Acknowledges Darkness While Seeking Growth and Hope

By Susan Roy, DMin, BCC
Pastoral Care Director

As hospital chaplains working with patients, families and our fellow staff members, we know that the stream of cheerful holiday messages and images might only make it harder for individuals experiencing grief or loss. Each year, we offer a series of services for people who seek a more reflective way of coping with the holidays.

I am just finishing the program for our Blue Holiday services later today (12:45 p.m.; 5 p.m.; and 6:15 p.m. to 8:15 p.m.) and hope that it will be meaningful for anyone who is feeling a bit blue this holiday season. Around the country, similar services might also be called a Longest Night service because it occurs on the winter solstice — Dec. 22, the day of the year that has the fewest hours of sunlight. Regardless of the name used, these programs acknowledge the darkness that may also be part of our holiday season.

Arranged in four parts, the service is reflective – not depressing – and moves from darkness to light while keeping a balance between the two. The four parts are loneliness, death, growth and hope. Each of the four parts includes lighting a candle, a reading, and a musical selection. During each of the four parts of the service, participants will be invited to come forward to place flowers in a wreath to represent those whom they remember.

For example: during the first music segment – about loneliness — I might place a flower for my frustration at work; during the second, I might place four flowers to remember three people who have died and a friend who is estranged from me; during the third, I might place a flower for the way I am growing in my faith; during the fourth, I might place two flowers, one for world peace and another for hope.

The service acknowledges the darkest night of the year and symbolically allows us to acknowledge the darker parts of the human condition and our own lives. In the midst of darkness, we still experience moments of light and hints of hope.

In addition to the spiritual help needed, here are some practical tips from two physicians at UMMC.

Grateful Father Organizes Concert to Benefit University of Maryland Children’s Hospital

By Daniel Purdie and Cynthia McClain Purdie

Last year, our healthy, vibrant 2-year-old son Adam suddenly began having convulsive seizures. Another emergency facility thought they were caused by a fever or an allergic reaction, but the University of Maryland Medical Center soon ruled that out. They performed thorough exams and Adam spent several nights in the PICU while we wondered, worried, and waited by his side. We knew he was getting the best care possible, because we have trusted the University of Maryland Children’s Hospital with our family’s health care for more than a decade. But that didn’t mean we weren’t afraid and nervous about what was happening with our baby.

Drs. Kathleen Currey, Jack Gladstein and the entire team at the Pediatric Epilepsy Center were attentive and addressed all our concerns when they diagnosed Adam with epilepsy (seizure disorder).  At first, we were disappointed about the extent of his treatment — our healthy 2-year-old would suddenly need to take medications twice a day for at least a year.  We thought there was a cure! But we were relieved that he had not suffered any brain damage or injuries, which could have happened over time had we not caught the problem.  Now, our son is 3 and we are happy he is responding well to treatment and has not had a seizure in a long time.

We wanted to thank the team at UMMC for the special kind of care they give to children and families, and to raise awareness about epilepsy in our community. Daniel is a performer and the second closest thing to his heart after family is music. He decided a benefit concert was in order and called it ‘AFAC: Applause for a Cause, Baltimore.’  He put the plans in motion and gathered support from fellow regional and national artists who donated performances.

The concert was held on campus at the Community Colleges of Baltimore County, Catonsville on October 14, 2011 and we had a great time. We were able to raise some money and share information about the great team at the Children’s Hospital. Plans are underway for an AFAC Baltimore Web site and a spring fundraiser. We want to continue to support the UMCH Pediatric Epilepsy Program.

Passion for Kids Leads Children’s Heart Director to Keep on Running!

By Dr. Geoffrey Rosenthal, Director, Children’s Heart Program


Running is my passion.  I haven’t skipped a day of running in four years and have been known to run even while injured, powering through a stress fracture or more recently, cracked ribs.  On most weekends, it’s not uncommon to find me running.  Ideally, I’m participating in a marathon or half marathon.

People always ask me what motivates me to run each day.  I do it for the children.  I run because I know we can do more to make life better for those touched by childhood heart disease.

When you’re running for 26 miles, you have a lot time on your hands.  There’s time to reflect and time to talk to other runners.  It’s also a great time to promote my other passion – the University of Maryland Children’s Heart Program.

I always wear my Children’s Heart Program t-shirt on race day, whether I’m at the Baltimore Marathon or the Boston Marathon.  Some of the best conversations begin with a comment about my shirt.  People share stories about how congenital heart disease has touched their lives.  It is a powerful reminder of how many people are impacted.  Congenital heart defects are the most common birth defect, affecting 1 in 110 infants born each year.  Congenital heart disease is also the most common cause of infant mortality from birth defects.

On October 15, 2011, I will run in the Baltimore Running Festival and proudly wear my Children’s Heart Program shirt.  But on this day, I won’t be alone.  140 runners will also be wearing the shirt to help raise awareness and funds for our program.  Our running team has members, ages 4 to 57, participating in a wide range of events, from the Kids Fun Run to the Baltimore Marathon.  They come from not only Maryland, but Virginia, Pennsylvania, Delaware, New Jersey, and New York.

Since last year, the University of Maryland Children’s Heart Program has grown to include a total of seven pediatric cardiologists, a cardiologist who specializes in adult congenital heart disease, and a pediatric heart surgeon.  Together, the team specializes in fetal diagnosis, management of heart rhythm problems, interventional cardiology, management of congenital heart disease in adults, pediatric cardiovascular thoracic surgery, and neonatal heart surgery.  We’re joined by specialists in nursing, quality improvement, nutrition, social work and other fields.  We’re building an expert team whose talents will help children with congenital heart disease live longer and lead more active lives.  We have set out with the goal to ensure that no child will need to leave the state of Maryland to receive needed care for heart problems.

To support the University of Maryland Children’s Heart Program Running Team, visit: www.ummsfoundation.org/pedsteam

The Child Life Department Hosts a Back to School Carnival

By Megan Kikola, M.S., CCLS
Child Life Assistant

If you happened to take the rotunda elevators to the Children’s Hospital on Friday, August 12, you would have been greeted by a wonderland of music, characters, and bright colors. A world where the pediatric patients were not focused on pokes, IV pumps and tears; but on games, prizes and laughter.  This event was the “Back to School Carnival” hosted by the Child Life Department at the University of Maryland Children’s Hospital.

A primary goal of child life professionals is to normalize the hospital environment, while providing psychosocial support to patients and families. Most importantly, child life professionals promote self expression and play. Creating a world where kids can be kids is always a priority, which is how the carnival idea came to be.

The creative vision was that of Sandra Dean, one of the child life assistants. “It’s all for the kids,” Dean said of the event, “…anything to make their stay memorable.” Her imagination, coupled with the support of wonderful donors brought the carnival to life. Once the plan was in place, the child life team got to work creatively, rallied volunteers, and gained the support of the medical teams.

Some highlights of the event included a bounce house, water balloon pop, a DJ, snow cones, games and prizes. Book bags filled with school supplies were donated and distributed to patients. The happiness and excitement of the patients made all of the hard work worthwhile. When told the event was underway, a young patient stated “Yay! I’m so happy!” as she ran toward the festivities. A parent shared, “It was so fun, my kids could have stayed in the bounce house all day.”

The child life team is very grateful for the continued support of the hospital community and volunteers and looks forward to hosting more of these events.

Parents of Former Patient Host Charity Remote Control Airplane Event to Benefit UMMC’s Neonatal Intensive Care Unit (NICU)

By Joanna and Andrew
Parents of Former NICU Patient

Andrew, Joanna and Michael present UMMC’s NICU with a check for $1,179.

Editor’s Note: Joanna and Andrew welcomed their son Michael into the world on July 21, 2009, after only 25 weeks gestation. He was 12 inches long and weighed only one pound, 10 ounces. At three weeks old, Michael was diagnosed with necrotizing enterocolitis (NEC), a condition primarily seen in premature infants that causes parts of the bowel tissue to die. After having two children born full-term and having not experienced any problems during this pregnancy, Joanna and Andrew were not prepared for the roller coaster ride they were about to embark on. Read their story below.

Michael was born at a community hospital in Baltimore on July 21, 2009. Despite being born after only 25 weeks gestation, he was progressing very well and even breathing on his own during the first few weeks of his life. However, when we got the call early in the morning that Michael had been diagnosed with necrotizing enterocolitis (NEC) and was very sick after doing so well the first few weeks, we were devastated. When we got to his isolet, there were so many machines and IVs hooked to him. He was no longer a healthy pink; he was grey.

The doctors at the community hospital started to treat him for NEC as best as they could, but he wasn’t improving as well as they thought he should. He would improve for a few hours then begin regressing again. His body started to shut down; his urine output was down to almost nothing.

Drs. Roger Voight and James Moore were called from the University of Maryland Medical Center. They came to the community hospital and examined him and started to treat him. After several days of undergoing treatment from Drs. Voigt and Moore, Michael was stable enough to be transferred to the NICU at UMMC.

Many emotions were going through our minds as the UMMC transportation team transported Michael from the community hospital to UMMC. Shortly after Michael arrived in the NICU at UMMC, he was taken into surgery. Dr. Moore performed the surgery that removed part of Michael’s intestines and colon.

Michael spent a total of 115 days in the NICU, with about 95 of those days being spent at UMMC. Dr. Moore and his staff, along with the many other doctors and nurses in the NICU, were very attentive to Michael and comforted us during this difficult time. The nurses gave us regular updates on his condition and were always available to answer any questions that we had. Thankfully, Michael recovered from NEC, as well as several other obstacles he ran into along the way. He is now a healthy, active almost 2-year-old.

Michael may not have lived if it wasn’t for the doctors, nurses, staff and technology at the University of Maryland Medical Center. Although we never dreamed of needing this type of care for one of our children, we were very grateful that it was available when we needed it most.

Two remote controlled planes flying during the fundraiser.

It is very important to support the NICU at UMMC to ensure that infants like Michael, who otherwise might not have a chance at life, can grow up to lead healthy, happy lives. It is because of the care that Michael received at the NICU that we hosted a charity remote control airplane event — the Maryland Electric Day Spectacular — to benefit the NICU at UMMC. The event was held on June 4, 2011 at the Konterra Model Air Park in Laurel, MD. It was a great event — the first of what we hope will become an annual event — and lasted late into the evening with 32 pilots from five different states and the District of Columbia attending. We raised $1,179, and all proceeds benefitted the NICU at the UMMC.

UMMC Nurse, Son, Use Post Traumatic Stress Disorder Experience to Help Others

By Deborah Yohn
Registered Nurse, UMMC’s Shock Trauma Center

I will never forget the day I received the call. The person on the other end of the line said, “I am calling with an alert call. I need you to get your husband and let him know there is a possibility he will be going to Iraq. He needs to give me a call for orders and the location of where to report.” From that moment on, my family’s life was turned upside down as we tried to get our affairs in order for a long separation.

My husband’s unit returned one year later to Fort Bragg in North Carolina. The days and nights of wondering if we would ever see him once again were at an end, but the difficult journey for my family wasn’t over. Although we survived what was thought to be the most difficult part of the deployment, we soon came to understand that things can be even more difficult once our soldier returned home. Evidence of the post traumatic stress disorder (PTSD) my husband was struggling with soon began to show.

PTSD Became a “Four-Letter Bad Word”

For my family, PTSD became a “four-letter bad word.” My son Isaac (pictured above with his mom), who was under 10 years old at the time, had no idea what PTSD was, but he knew that it was difficult, bad and scary. It was because of the support I received from fellow nurses at the University of Maryland Medical Center that I was able to get the assistance I needed to begin the process of learning and healing.

My husband’s physical injury was easy to define and treat. The prognosis was clear, and there were no unpredictable factors in his care. He had surgery at UMMC, and though his recovery and physical therapy were difficult, it was expected. Recovering from PTSD, however, proved to be the exact opposite. This disorder had become something that held my husband hostage, and was destroying my family. At first, I thought things would just work out by themselves. After all, no one talked about PTSD, so it couldn’t be that difficult to recover from, right?

It was difficult trying to hold all the pieces together and keep things at home “normal, quiet and predictable.” Actually, it was impossible. Children are not quiet, nor are they predictable, so PTSD became my new best friend. I also learned about another condition known as “Secondary PTSD.” The effects of my husband’s PTSD trickled down to the whole family, making life very difficult, stressful and, at times, even made us feel hopeless.

Journal of Healing Turns into Book to Help Others

In my search for a book to explain what was happening in our family to my son, I found nothing that was helpful. We all started working with a therapist who suggested I write a journal with my son, so each night my son and I would snuggle up and take about ten minutes to write about PTSD. It became our quiet time together, and a time of healing. Together, we wrote a story about our journey.

When my son was finished with our little project, the therapist wanted to read the book. At the time, I was not at all happy with the thought of sharing something so personal. I had struggled with the title my son gave the book, Never Lose Your Hope. In all my years as a nurse, wife and mother of three, hope was always alive. The glass was always half-full, so to speak, and I could smile through just about anything. I had no idea that my son had begun to lose hope that things would ever be normal again. I was aware of the changes in myself and in the family, but thought I hid them well. I had no clue that my hope of recovering from this seemed to have disappeared and my son had noticed.

After giving the book to the therapist, she suggested that we publish it because she felt it was a resource that could help many other children and families dealing with the same situation. Our story is a story about PTSD as told through the eyes of a child. This little book is our attempt to normalize PTSD and provide a tool for other children who have a family member who has returned home after serving his or her country different than when he or she left. It is a quick read — only 40 pages — but there are no pictures because my son thought pictures would make the book pretty, and to him, there is nothing pretty about PTSD.

If you would like to order Never Lose Your Hope, please visit www.PublishAmerica.com or www.amazon.com.