Heart Pillows

Parents for Heart once again purchased therapeutic heart pillows for the heart patient children at the Minneapolis Children’s Hospital. This is the 2^nd time we’ve been able to supply these wonderful aids for our kids. The pillows come in a heart shape with our logo on one side and a pen for the child to get it autographed while recovering from heart surgery. You can learn more about the pillows by going to: www.shumsky.com .

We received this note from Judy Sawyer, the social worker from Minneapolis Children’s that works with our heart kids:

“Thank you so much for your quick response on the heart pillows.
The families are so appreciative of them--one of the PICU nurses paged me the other week saying her 7year old patient had fallen asleep with the pillow in his arms! ...”

The heart pillows are something Parents for Heart would like to continue to donate to the kids but take quite a bit to purchase so we’d like to thank Teresa Sit and her family for contributing a large donation and Kent Gebauer for also contributing to make this purchase possible. If you would like to donate to the Heart pillow fund in care of Parents for Heart just send a check to the Parents for Heart address and mark it for the Heart Pillows.

Parents for Heart T-Shirts are now available for purchase at the monthly meeting. The cost is $10.00 per shirt. Kids and Adult sizes are available.

We Care Kits

©“We Care” Kits in the PICU and NICU©

Parents for Heart has launched a new way to reach out and support our heart families when they most need it: when their child is in the hospital. It is our hope that the families that receive these kits will find them helpful as well as comforting to know there is a support group for them who cares. We have included in the kit: journaling pages, blank calendar pages to fill in with important information, note cards made especially for them from our Kids for Heart group, a recent Parents for Heart newsletter and pen. We are excited about this new program and hope that our members will find ways to donate time and help to keep this program going. If you know of a church, scout, brownie group that would like a service project we need help assembling the kits each month. Please contact Celeste at boardmembers@parentsforheart.org for more information.

Getting Involved

Become a registered member of Parents For Heart.

Print the attached registration form and mail to:

Parents for Heart of MN, Inc.

Attn: 32-P190

2525 Chicago Avenue S.

Minneapolis, MN 55404

2008 Registration Form

-or-

Send an email to boardmembers@parentsforheart.org requesting a registration form and one can be mailed to you.

Let us know if you’re interested in volunteering for any position!!

Newsletter Editor - OPEN

Newsletter Coordinator - OPEN

Photographer – OPEN

HOW DID IT GO

©November, 2007©

Dr. Jamie Lohr from the U of M presented a wonderful evening on genetics of congenital Heart defects. Every parent of a heart child wonders what part if any genetics played in the roll of their child's CHD. Questions such as why does one identical twin have a CHD and the other does not; will my child pass his/her CHD onto their children; are future siblings at greater risk of having a CHD? All these questions seem to be common to many parents. Dr. Lohr has been working extensively in research of some of the genes that may be related to CHDs. She also shared with us a wealth of information that has been garnered so far as well as how far the question of genetics has yet to go. Interestingly, the rate of CHDs has not increased or decreased over the years but has remained fairly constant. What an amazing thing it would be if the study of the genetics of CHD could help reduce the rate of occurrence. Also very interesting was the different ways genetics and DNA is studied and how new ways to further investigate DNA are being refined. Karyotype, FISH probe, Comparative Genomic Hybridization (CGH), and DNA sequencing are some of the types of DNA studies. In summary, Dr. Lohr states that 1. Single gene defects can cause multiple types of heart disease. 2. Multiple genes can cause the same defects. 3. Individuals with the same gene defect can be affected differently.

©July, 2007©

By Gina Werner (Parents for Heart’s new Co-Chair – we look forward to your leadership and talent, Thanks ~ Celeste)

On July 10, 2007 at the Pediatric Cardiology Building on the University of Minnesota Campus, Dr. Shanthi Sivanandam, Dr. Dan Gruenstein, and Dr. Cindy Herrington from the Fairview University Children’s Hospital spoke to the Parents for Heart Group on Hybrid and Minimal Invasive Approaches to Treat Congenital Heart Disease.

The evening began with pizza and refreshments and then the parents went to a conference room to view a presentation given by the above-named doctors. Volunteers from the hospital provided childcare.

The presentation showed our group some very exciting new hybrid techniques to treat congenital heart disease. The University of Minnesota Children’s Hospital is one of the few places in the nation where some of these procedures are being performed. The doctors talked about having new operating rooms that can accommodate the staff needed for both cardiac catheterization and open-heart surgery. They talked about being able to attempt repairs less invasively with cardiac catheterization. If the procedure could not be completed by catheter, they could proceed right to surgery under the same anesthesia and in the same room. This alternative is much better for the patient and the parents. The doctors told us that previously if they could not do the repair in the cardiac cath lab, the patient would be sent home and then be re-scheduled for open-heart surgery. Because the facilities are set up for both catheterization and surgery, the procedure could be scheduled once and be completed that day.

The other part of having both the cardiac catheterization lab and the operating room together is that the cardiologists and surgeons can work together to do a repair. Sometimes in treating congenital heart disease, it helps the surgeon to reach areas of the heart that are difficult if the cardiac catheterization doctor can get into the area of the heart via artery to help the surgeon do the repair.

The other exciting news they gave us is that there are new hybrid and minimally invasive advancements in treating Hypoplastic Left Heart Syndrome if the patient meets certain criteria. The doctors also shared with us that they can close some Atrial Septal Defects in the cardiac catheterization lab. Also, we were told that there upcoming advancements in the possibility of closing ventricular septal defects in the cardiac catheterization lab. A question was asked specifically about being able to put artificial valves in through the cardiac catheterization lab, which the doctors told us is being developed in the cardiac laboratory for future FDA approval.

©April, 2007©

Parents for Heart had its first meeting at the University of MN with a wonderful reception. Dr. Shanthi spoke to PFH on counseling families of children with newly diagnosed CHDs. She was wonderful in explaining the positive effect on the new baby of helping families come to terms with and cope with this new diagnosis. Dr. Shanthi's time, care and concern was evident as she shared her knowledge with us. The parents and families that attended were able to visit and become more acquainted as members of Parents for Heart and members Mending Hearts have been able to come together and consolidate as one family support group in the Twin Cities.

©February, 2007©

We had a great time. Thanks to all that were able to attend and hope to see those who couldn’t next year.

Our entertainment, KidPower with Rachael, was awesome and fun. She would love to come back and perform for us again. Especially great was her KidPower Choir who not only livened up the performance but a special thanks to the choir and their parents who took the time to put together some of our We Care Kits. Thanks!

Since pictures are worth 1000 words ~ here is a bit of the action!

©December, 2006©

Teen Night at Chuck E. Cheese

Teen night at Chuck E. Cheese in Blaine was a lot of fun. I think the pictures can speak for themselves. Even after all the alloted tokens had run out some resourceful young teens managed to find a treasure trove of “lost” tokens under games and such. It was fun to see all the smiling faces.

Please continue to look for other teen activities coming up soon. We are hoping for record-breaking number of teens attending. It is a great way to meet other “heart” teens from the Twin Cities and greater Minnesota.

©November, 2006©

November Educational Meeting

Parents for Heart was very fortunate enough to have as speakers for our November meeting, Dr. Kirsten Dummer, a new member at the Children’s Heart Clinic and Kevin Gordon from the Adult Congenital Heart Association and Parents for Heart “heart child”.

Dr. Dummer had just started with the Heart Clinic the 1st of November. She brings with her a wealth of knowledge and enthusiasm on how to grow the services for our children as they become adults. Dr. Dummer talked about how to bring all of the heart child’s doctors and disciplinary teams together as the child becomes an adult so they can receive the best care possible from their primary care doctor, OB/GYN and other specialists. She is enthusiastic about what can be accomplished here in the Twin Cities for this growing population of adults with congenital heart defects.

There was also an article featuring Dr. Dummer and PFH member, Amy Wynia in the Children’s Hospitals and Clinics newsletter that was informational as well. Go to www.childrensmn.org/Communities/News.asp

And click on Children’s Magazine to view the article or go to our website www.parentsforheart.org for a link.

Kevin Gordon is Marilyn Gordon’s son. Marilyn is one of the founding members of Parents for Heart more than 20 years ago.

Kevin is very involved with the ACHA (Adult Congenital Heart Association) and is on the board. One of Kevin’s goals is to educate us as parents of heart kids so that we can educate our children to take care of themselves and learn to stay in close touch with their doctors as they enter adulthood. Kevin showed us the value of joining the ACHA as parents to get the information needed for our childrens as adults. It is free and does not require a lot of personal information. You can check out their site at www.achaheart.org. Kevin also emphasized the importance of obtaining medical records and keeping pertinent information of your health history on you at all times. The ACHA has a good tool for organizing this information called the Personal Health Passport.

I think one of the most poignant part of hearing Kevin speak was of his childhood and his heart and how he overcame his obstacles and has become successful in life with humor, hope, enthusiasm and courage that I’m sure we all hope our children with carry with them as well.

A BIG THANKS to all the PFH members and new families in attendance that night. We had a great time meeting and reconnecting. It was great to see families with teens or adults able to talk to families with new little ones as they begin their journey with CHDs.

©October, 2006©

Annual Costume Party

Parents for Heart had their annual Costume party in October. In addition to all the fun activities, we had the special treat of enjoying Rachael with Kids performance. She was very engaging and both kids and parents had lots of fun singing and dancing with her. We would very much like to thank our PFH members Dan and Brita and their daughter, Ellianna, and grandmother, Lynda, for donating such a fun activity for our kids.

The costumes were fabulous. Everyone from a hockey player to Pebbles Flintstone was in attendance.

©August, 2006©

Annual Summer Picnic

We had a fabulous summer day at Como Zoo. The weather cooperated on cue as they cloudy misty weather gave way to a sunny day just as the picnic was underway. Our families enjoyed meeting and visiting with each other and relaxing. The food was yummy and thanks to all that attended and brought such great treats and salads.

Como Zoo’s remodel looked great. It was fun to see all the changes the zoo has put into place over the past few years.

We will look forward to seeing even more PFH families attend next year.

©June, 2006©

Madelyn’s PaceMaker 5000

This year proved to be a rainy start that turned lovely, warm and sunny by the end of the fun run. The kids had a great time at the new kids craft station where they made self-designed buttons and to her activities before the race began. There was music and entertainment for the kids to dance and move to and snacks for the hungry runners at the end of the run. The Kid’s Fun Run across the bridge was a highlight for all the little ones as they received a blue ribbon and sand bucket of goodies as they crossed the finish line. Again, another fun event that we look forward to participating in next year. Thanks to the Schmelings and all that helped put the event together.

©May, 2006©

In May we had the pleasure of having Dr. Burton of the Children’s Heart Clinic speak to us on pacemakers and defibrillators.

Dr. Burton was great in presenting all this information to us in uncomplicated terms and with visuals to help us comprehend all the great information he had to share. We were able to pass around a collection of pacemakers, leads and defibrillators as Dr. Burton discussed the differences between all the types of leads and the differences between pacemakers and defibrillators. We were also able to ask as many questions as needed to understand a new concept.

Parents for Heart was able to not only invite their members, but extended the invitation to this meeting to all of the Children’s Heart Clinic pacemaker and defibrillator patients and families. We were also fortunate to have in attendance, Lisa and Tait, our pacemaker/defibrillators techs that help us out for all those pacemaker phone checks, clinic checks and such.

Members and those in attendance ranged from parents to teens with pacemakers to parents with children who have just recently received a pacemaker.

It was nice to meet everyone, learn from our doctors in a relaxed setting and find a common thread to share experiences.

©February, 2006©

February HEART PARTY AND CHD AWARENESS DAY!

The Annual Heart Celebration and CHD Awareness Party was held at Children’s Hospitals and Clinics, Minneapolis Campus on February 11^th from 10:30- Noon. Children of all ages attended and great fun was had by all. Pictures were taken and a poster was made to display at the American Heart Association Twin Cities Heart Walk. There were many games for the kids to play and lots of art activities to do. The favorites were cookie decorating and the piñata! The party ended with a group photo of everyone attending. It was a great time to meet kids, parents, family, and friends of these heart children and to share experiences. A big thanks to Celeste Gebauer for organizing the party and also for all of her time and hard work she devotes to Parents for Heart.

AMERICAN HEART ASSOCIATION MALL OF AMERICA HEART WALK

Parents for Heart had a great time at the Heart Walk with lots of thankful support from the American Heart Association and especially, Joanne Sisco. We had an information table next to the Teddy Bear Band and “the guy making the balloon animals”. Parents for Heart was able to distribute a lot of information about our group, Camp Odayin, and CHD Awareness. After the Heart Walk, our families met by Legoland for snacks and to enjoy the complimentary ride passes for The Park a.k.a. Camp Snoopy. The kids were so excited to get a chance to ride the rides and enjoy each others company. Thanks to all the parents and families that participated in this worthwhile and fun event.

©November 11, 2005©

Parents for Heart had an AMAZING turn-out for our meeting. So many families were present and the speakers were incredible. Nick Zerwas spoke first and gave an amazing account of his miraculous life; but the best part of Nick’s presence was after the meeting when the heart kids got to meet and talk to him personally! He is such a positive person with a great sense of humor. Personally, our son has a pacemaker (like Nick) and has been anxious to meet someone else “just like himself”. Nick was gracious enough to show Graham his pacemaker (in his abdomen just like Graham’s). They got their photo taken together and Nick signed his book for Graham. I noticed other heart kids doing the same thing.

Dr. Overman came with an exceptionally well-prepared presentation about single ventricle defects and the new techniques being implemented and comparisons with the older techniques. Despite a glitch in the missing hardware for his PowerPoint Dr. Overman was very generous and resourceful as he found some equipment to be able to present that night. I believe that a majority of the parents were of children with the heart defects Dr. Overman focused on this evening. I was impressed with all of their knowledge and the amount of familiarity they had for each other. Dr. Overman also addressed questions from the group after his presentation.

The Kids for Heart group were lucky enough to meet in the newly remodeled Sibling Play area. I know all the kids were very excited to try it out. Our volunteers were wonderful as always and especially so for their ability to take care of it all on their own as the parents and meeting coordinators were busy keeping the educational parent meeting going.

Nick spoke at our November meeting: Here is his book order information if you would like to order his book.

Nick Zerwas speaks around the country for the American Heart Association. Since birth he has survived ten open heart operations. He talks to groups and students of all ages about his remarkable journey and the importance of family, friends, and scientific research.

For more information about The Gift Of An Open Heart contact Nick Zerwas at www.NickZerwas.com.

Books available at www.NickZerwas.com, www.DeForestPress.com, and www.Amazon.com.

The Gift Of An Open Heart by Nick Zerwas, 6” X 9”, ISBN 1930374178, $18.00. Pub date: 9/05

©October 11, 2005©

Annual Costume Party

The kids sure had a good time. Their decorated cookies creations were yummy. Thanks to Marilyn Gordon for sharing her time to supervise the cookie creations. The older kids had fun running the different games and crafts for the little ones.

The kids made spooky ghost wind socks and formed monsters out of colorful packing peanuts. The monstrous twister game netted a grab in the goody bag for bubble rings or Chinese yo-yos. If the little goblins got too tired there was a nice retreat of a Winnie-the-Pooh Halloween video and a blanket to stretch out on.

Of course, the piñata was the highly anticipated event. This year the piñata made it through all the kids – smallest to biggest – and was handmade this year to insure “bustabilty”!

It was great to see the faces of our new members, the Guses and the Roberts. We hope to see you again soon and look forward to getting to know you better.

©August 13, 2005©

Summer Picnic

Our summer picnic was held this year at the Gebauer home. What a nice summer day...come to think of it the whole summer seemed to be fantastic in the weather department.

It was nice to meet outside of our usual hospital setting and relax and enjoy each other’s company. We had a great B-B-Q that everyone enjoyed. There was bocce ball and badminton to play. The kids really had fun hanging out with each other. In fact Tony Kenow’s son, Brian, thought we should get together more often and spent his afternoon wondering who was going to come.

Thanks to all that participated and we’re looking forward to next summer.

©June 25, 2005©

Lots of great Parents for Heart members showed up for another fabulous morning at the scenic Stone Bridge in Minneapolis. Some of us ran and some just “walked briskly”. The event had a great turn-out with lots of teams walking for their company or group. The morning started with a photo of all the kids who had been patients of Children’s Hospitals and ended with a great Kids Fun Run across the Stone Arch Bridge. Parents for Heart members, Sayleen and Paul Schemling were again very involved in the planning and coordinating of the event with the Gilbertson’s who began the event in celebration of their 4 year old daughter, Madelyn, who has a pacemaker. Dr. Singh and Tate Nelson from the Children’s Heart Clinic also attended the event. We can’t wait for next year for another wonderful day in Minneapolis.

©May 2005 Meeting©

Tour of the New 3^rd Floor

What a great show of members and tour of the new facilities. A big Thank-you to all the members who attended and brought photos and updates of their kids!

We learned from our tour that the 3^rd Floor Step-Down unit is not in the new tower but a remodel of the original 3^rd floor. Everything was carefully thought out and geared for the whole family. Our tour guide the charge nurse for the night said they have been dubbed the “Hilton”. The colors are calm and kid friendly in yellows, greens and blues. This step-down unit is about 50% open and is made for our heart kids to get out of the PICU quicker with about a 2:1 patient/nurse ratio. All the rooms are private and space for parents to room in with their child. We were all very impressed with the new floor and excited to have a new place for our kids to go to after their PICU stay.

KIDS FOR HEART was a great group of kids. Since our meeting was close to Mother’s Day the kids painted pots for their moms and brought home flowers to plant in the pots. They had a great time and even got a little messy! The kids also created some new artwork for our note cards that are included in the We Care Kits passed out in the PICU.

©April 2005 Meeting©

CPR Review Class

Mr. Paul Mitchell from Respiratory Care Services instructed the
class from 7:00-8:30 PM in the 2nd Floor Education Center at Minneapolis
Children's Hospital. He was so informative and interesting to hear. We learned that the recommendations for the Red Cross CPR will change again soon and are usually updated about every 5 years. Paul spent some time discussing the new AED’s that are now in almost every public place and how to use one. He also explained the differences for their use for adults and pediatrics. Paul Mitchell, when asked what he’d like us most to remember, told us that over a million people have been helped by CPR and if you figure how that has affected those individual’s families and friends the impact of knowing and saving lives with CPR is profound!

Our Kids for Heart group had a PJ party and watched the movie The Incredibles. They enjoyed our wonderful hospital volunteers and snacks in their comfy jammies!

Twin Cities American Heart Walk - February 26^th, 2005

American Heart Walk at Mall of America

Parents for Heart walked Saturday, Feb. 26^th , at Mall of America for the American Heart Association. We also had a booth set up to hand out Parents for Heart Brochures and CHD Awareness information. We had a great time getting together and getting the awareness of CHD’s out there. Look in our next newsletter for our awesome photos from the event and a recap of our morning.

February CHD Awareness and Heart Celebration

What a fun day we all had!

The turn-out was great with new members coming for their 1^st time and members who have been a part of Parents for Heart for 20+ years! Kathy McDonald had an awesome display set up for CHD Awareness. She had a drawing for a huge teddy bear and other fun items. Kathy made sure we all went home with stickers to wear on February 14^th – CHD Awareness Day. The kids and adults a like had fun with all the crafts and games. Of course there was a piñata, which is always the kids favorite-now if they would just make those piñatas easier to bust open! Thank-you Danielle for finally cracking it! We would also like to give a big Thank-You to our volunteers-Margie Alexander, her family and friends that came to help us out and brought a fabulous Jeopardy Game that was a big hit. And Kirsten Gebauer and her friends for helping us run the games.

We ordered Pizza Hut pizzas and invited the PICU parents to join us. It was great to meet and support the moms of new heart babies

that joined us for dinner. It reminded us of where we were a few years back-tired, in shock, just coping and hoping for the best. I think it was helpful for them to see and hear about the older heart kids who are doing so well. With lots of extra pizza left we donated it to the wonderful PICU nurses and staff. We also brainstormed ideas for upcoming meetings and events.

Parents for Heart is going to have a great year!

Dr David Gremmel from the Childrens Heart Clinic enlightened us with a slide show about fetal information on kids with complex heart disease. He is speaking to many Obstetricians to increase the odds when looking at ultrasounds in detecting fetal heart disease. 90% of major congenital heart disease could be detected on the ultrasound. Currently Obstetricians can pick up 1:5 kids for major heart abnormalities. Cardiologists need to get a fetal echogram around 18-20 weeks into the pregnancy as this is before the fetal bone structure develops and it is easier to look directly at the fetus' heart.

A new type of doctor is being trained with both, pediatrician/adult cardiology knowledge. This is good as many of our children are entering/have entered adulthood. Studies are being developed on congenital heart disease adults and their offspring

Facts:

A. Survival rates for Transposition of the Great Arteries

1949-59 20%

1960-79 65%

1980-89 85%

1990-99 95%

B. A large (over 2.5mm) neck fold on back of baby's neck may indicate heart disease

C. 95% of baby heart murmurs are OK

D. 50% of major heart abnormalities do not have murmurs

E. A book came out with studies of moms and dads that had congenital heart disease of what may happen to their offspring. 94% of babies are OK with the mom having had a VSD (Ventricular Septal Defect).

Sorry...I forgot to get the name of the book from Dr. Gremmel.

That's all my notes! This is the first time I met Dr Gremmel and he was very informative and respectfully answered our specific questions. Great speaker and terrific slide show! If you weren't there, ya missed a good meeting!

ANNUAL Costume Party

Sponsored by the Tricuspid Atresia Committee

Parents for Heart had their annual costume party October 9^th. There were lots of games, crafts and treats to have by all. The kids looked forward to wearing their costumes BEFORE Halloween. We had lots of helpers to supervise the Mummy Wrap Game, Catch the Ghost, and great pumpkin and vampire crafts. As the parents got to visit with each other the “goblins” got their photo taken in their costume and decorated cupcakes. The highlight of the morning was the costume parade and piñata (a witch that proved bewitching to break!). The parents had to finally help out to get the candy and goodies to the kids!

Thanks so much to Margie Alexander and family for bringing the fun snacks and haunting “brew”; to Sayleen and Paul Schmeling who donated Timberwolves Beanie Babies; and Suzy Palen for helping out!

We can’t wait to see all the goblins next year!

Our September meeting was titled, “Heart Kids: Support at School”. Our presenter, Beth Ann Bloom, from the PACER Center educated us on what we can do to help our heart kids and other special needs kids at school. Beth Ann has not only been involved in the PACER Center for a long time but has raised a special needs child with Brittle Bone Disease. She was able to give us insight on being a parent and working with the schools to get the help your child needs. Beth Ann gave us a great overview of how to initiate help from the school, how an IEP plan works and how the PACER Center can help educate parents working with the school. Those of us that attended received a lot of information and left feeling more in control of how our child is educated.

Thanks Beth Ann Bloom from the PACER Center and all the parents that attended.

The Kids for Heart group enjoyed their time with the great Children’s Hospital volunteers and made personalized bulletin boards they could hang up at home or in their locker at school.

We had a small member turnout for this meeting (probably all the summer vacations) The plan was to have a Respiratory Therapist from the hospital come talk about CPR in infants and children. They were not able to speak but will reschedule in our 2005 year. They did loan us a couple of videos on Infant/Child CPR that were very informative. The Kids for Heart program had a great time with their Summer Camp crafts and especially look forward to playing with their favorite volunteers from the hospital.

The PaceMaker5000 was a great experience again this year. The weather was perfect and the scenery of the Minneapolis Riverfront spectacular. We saw lots of Parents for Heart members participating and Sayleen & Paul Schmeling did a big part of helping organize the walk. This year Madelyn's PaceMaker5000 made $143,000 for Children's Hospitals.

Tetralogy of Fallot committee

The May 10th meeting was attended by a dozen parents who were lucky to hear a presentation by Dr. Gleason from the Minneapolis Children's Heart Clinic. Dr. Gleason shared her knowledge on cardiac MRI 's and introduced fetal echocardiography. Her presentation explained the how's and why's so many of us wonder about. She also used detailed visuals that were incredible. Dr. Gleason answered everyone's questions and left us all with a deeper understanding of these testing procedures.

The Gilbertson's were also in attendance and presented the Pacemaker 5000 event. They explained how to sign up and gave a brief summary of how this event was started. It has grown into a huge fundraising opportunity and shares with so many organizations.

The Kids for Heart were kept busy creating Mother's Day gifts and playing with the fabulous volunteers from the Minneapolis Children's Hospital.

The Tetralogy of Fallot committee did a terrific job coordinating this event. Special thanks to Steve Wetrosky and Tony Kenow.

Truncus Arteriosis & L-Transposition & Total AV Canal Defect Committee

April's meeting was great. We got to meet some new members. One couple even drove in from Mankato. We got to use to Family Resource Center and Kendall, from the Resource Center, pulled all the heart books for us to review and use. Kendall also had some great websites listed for us. Some of the books had been dona