SBH News: Link Up!

With much excitement, Sisters by Heart is proud to announce our ground-breaking resource for families affected by Hypoplastic Left Heart Syndrome.  For details on how we aim to transform the HLHS community, watch the following video and learn how Sisters by Heart can link your family.



We look forward to supporting, strengthening and linking our HLHS community.

Join us at Linked by Heart!

SBH News: Not to Miss!

Sisters by Heart is preparing to announce some exciting news for families affected by Hypoplastic Left Heart Syndrome. 

With a significant increase in the volume of families served, Sisters by Heart brainstormed, re-vamped and created some exciting new tools for our HLHS community.  Since our inception, we've seen our HLHS community grow tighter and stronger.  We've watched life-long friendships form and heart warriors meet for the first time.

We can't wait to share with you what's in store for all HLHS families.   Whether you're expecting, have a newborn, are a veteran parent, HLHS adult or navigating life after the loss of your HLHS child, Sisters by Heart is here for you.  

Stay tuned and know that we remain committed to our community and assisting you in the HLHS journey, no matter what path you're on today or will be led down in the future.

Practitioner's Post: Stem Cell Research for the HLHS Patient

If you've been following us on Facebook or Twitter, you've likely seen our posts and tweets about Dr. Timothy Nelson and the HLHS Research Program at the Mayo Clinic in Rochester, MN. The information Dr. Nelson and his researchers shared with Sisters by Heart is extremely fascinating and provides great hope (and a serious sense of urgency) for all of us affected by Hypoplastic Left Heart Syndrome. Thank you Dr. Nelson and the program's research coordinator, Julia, for sharing the latest developments in regenerative medicine for the HLHS patient.

I’m Timothy Nelson, MD, PhD, program director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic. The goal of our research program is to develop innovative clinical trials that offer the latest advances in cell-based therapy that could be used to treat people with HLHS.

Dr. Timothy Nelson in the lab

Upon completing the three stages of surgery, HLHS is ultimately a disease of the right ventricle that becomes too weak to be able to sustain normal cardiac function. Fortunately, surgical procedures over the last two decades have lead to dramatic improvement in the care of children with HLHS, but many questions remain unanswered.

Through our research, we hope to better understand the causes of HLHS, to develop a system for predicting right ventricle performance, and to determine whether or not the patient’s own stem cells could potentially be an effective treatment. Understanding whether stem cells are dysfunctional in patients with HLHS or whether they are normal will be very important to help determine whether the use of stem cells or regenerative medicine could be an appropriate therapeutic strategy. Who is the right person for regenerative therapies? What are the right types of stem cells? When is the right time for this potential therapy? To answer these questions, we are focusing on research studies that involve families affected by HLHS.

Our program is focused on the next generation of therapies that could be used to improve the function and long-term performance of the right ventricle – one of the potential therapies being regenerative medicine through the use of stem cells. Regenerative medicine is the process of regenerating human tissues with new building blocks to heal or replace damaged or diseased tissue. This would be similar to planting a seed in order to grow a flower. Stem cell therapies aim to transplant “stem cells” into damaged hearts with the goal of growing new heart muscle.

Bioengineered stem cells start with the collection of tissue, such as discarded skin from a surgical procedure, and are then converted into stem cells that can acquire a new ability to grow into heart muscle. These stem cells – and ultimately the bioengineered heart muscle derived from these cells – originate from the patient’s own body. These cells can then be studied in the laboratory to further understand the molecular causes of HLHS, and hopefully provide a powerful tool to better customize innovative solutions for people with HLHS.

To see video regarding the bioengineering of stem cells, watch this fascinating video; the video depicts how Dr. Nelson is creating bioengineered tissue for HLHS research.



Dr. Nelson's team shared with us the video clip of the beating cardiac tissue he's created in the lab.

Regenerative medicine strategies and stem cell-based therapeutics have been applied to heart disease in adult patients over the last 8 years. This experience allows us to consider the possibility of applying similar technology to patients with HLHS and other congenital heart disease. Although this is not yet available, the promising vision of this regenerative approach becoming a reality requires significant scientific and preclinical research studies to be the focus of today. We are fully dependent on the participation of families affected by HLHS in order to generate the data that is required to make the new discoveries and innovations for the clinical practice of tomorrow.

Although we don't yet know that stem cells will be used in the care of patients with HLHS, this type of research will be paramount for the scientific community to be able to make an informed decision as to the safety and efficacy of such hopeful therapeutic strategies. Ultimately, we hope our research will result in the ability to delay, or prevent, the need for heart transplants in people with this congenital heart condition. More information about the ongoing research for HLHS can be found at:
http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/

If you have specific questions regarding Dr. Nelson and his team's research, feel free to contact them at: hlhs@mayo.edu

Creative Donors: a whole lot of SBH love

We have been SO blessed with not just one, but five separate fundraisers held in our honor! We are seriously grateful! The best part of these fundraisers - they were very pleasant surprises from our supporters.  Each of these donors contacted us and asked if they could raise funds on our behalf! We are so fortunate to have such amazingly creative donors who want to continue and advance our mission. THANK YOU from the bottom of our hearts!!! It is due to your generosity that we are able to continue supporting families.

Sustainable Babyish / Sloomb
One of our recipient moms, Jennifer (see more about her sweet daughter, Zoe, below) contacted us to let us know that Sustainable Babyish planned to create a special cloth diaper in Zoe's honor - and wanted the proceeds to benefit Sisters by Heart! We were thrilled, not just for the funds received, but for the CHD awareness that resulted. The diaper was BEYOND cute and sold out in seconds.

Can you blame cloth-diapering mamas for hopping on these? How adorable, right?!? Thanks to the generosity of Erin at Sustainable Babyish, we received not just the $360 she would have made from the special diaper, but also several other generous donations from donors who read about us on Erin's website.

To check out her other adorable products and show her some love for her support of Sisters by Heart, check out Erin's website at www.sustainablebabyish.com. 

Thank you Erin and Sustainable Babyish for your heart and raising awareness for CHDs and Sisters by Heart!  

Kelrik Productions
Another of our recipient moms, Melissa (whose sweet HLHSer Ella, is 7 months old, post-Glenn and doing awesome!) approached us to let us know that a close friend of hers operates a nonprofit theatre group in San Luis Obispo. The group, Kelrik Productions, selects a nonprofit each spring to suppport via their annual fundraiser. When asked, Melissa selected Sisters by Heart! So, at every run of Once Upon A Mattress from February 25 to March 11, someone spoke about Sisters by Heart and collected donations on our behalf! What a wonderful way to raise awareness about CHDs and what our families face on a daily basis! Thanks to the generosity of Kelrik's co-founder Erik, his team and their supporters, Kelrik Productions raised over $600 for Sisters by Heart!

To support Kelrik Productions (and see some amazingly talented entertainers while you're at it) check them out at kelrikproductions.com.


Jennifer and Brian Fultz
When it came time to start thinking about Zoe's (of "Zoe Diaper" fame, above) upcoming Glenn surgery, Zoe's parents, Jennifer and Brian, had adorable bracelets made in her honor,  to remind others to support and pray for Zoe.

Seriously, is she precious or what, showing off her cute bracelets?!? (and clearly the bracelets helped, because Zoe rocked her Glenn and, after a few complications a bit further down the road is now home and doing great!)

Zoe's parents donated the proceeds from the bracelets to Sisters by Heart!!! We're so blessed for the Fultz family and their continued dedication to Sisters by Heart. Thank you Jennifer, Brian and Zoe!

Joyce and Julie Dermody
Joyce is a distant cousin to one of our SBH warriors, Bodie. 

Joyce is a wonderfully kind young lady who just celebrated her 18th birthday. In honor of her birthday, her mom Julie wanted to do something really special. So she threw Joyce the biggest, most amazing surprise birthday party. Julie contacted Sisters by Heart to ask if, in lieu of gifts, guests could make donations to Sisters by Heart. We of course said "yes!"  They successfully surprised Joyce, had an awesome evening, complete with a Silent Auction, and donated all proceeds to Sisters by Heart. The Dermody's raised over $325 for Sisters by Heart - and they tell us they're planning on making it an annual event and raising even more money next year. To which we say "YES! YES! YES!" Thank you so much for thinking of us, Joyce and Julie.

Art 4 Heart
Another of our recipient moms, Beckey (whose HLHSer Kennedy Mae was formerly on the transplant list and is now defying the odds, thriving with her Glenn physiology at 14 months!) approached Sisters by Heart and let us know that she was putting together a soon-to-be annual blood drive and art auction called Art 4 Heart. The event would be in honor of Kennedy, with the proceeds to be split between 2 different CHD organizations. We were so flattered that she chose Sisters by Heart to be one of those organizations! 

This is just a sample of the amazing art available at the event! 

The event was a lot of fun for everyone who attended - and raised awareness about CHD's - and over $500 for Sisters by Heart! We're so grateful to Beckey and the entire community who came together to support this wonderful event and Sisters by Heart!

Thank you to all of our special donors for your generous love and support.  With your help, we've provided HOPE to over 200 families!

If you'd like to raise money for Sisters by Heart, please contact us at info@sisters-by-heart.org. We welcome new fundraising ideas and love hearing from supporters on how they're spreading the word about Sisters by Heart and HLHS.

Top Ten HLHS Baby Products

With the 2012 Cribsie Awards recently announced, Sisters by Heart took a poll to discover the “best products” our HLHS families found useful in their journeys.  We received several responses via our Facebook page and emails.  After reviewing all of the entries, including some new fantastic products we’d never heard of before, we found the Top Ten HLHS Baby Products to be (in no particular order):

1.  The Boppy Seat / Nap Nanny

Our families found the Nap Nanny and Boppy pillow helpful in similar ways.  The Nap Nanny is great for reflux management after feeds and is very comfy.  Many HLHSers practically live in their Nap Nannys interstage and post-Glenn (to help with the infamous "Glenn head").  The Boppy also assists with feeding, tummy time (when cleared post-operatively) and assisting your little warrior in strengthening muscle tone.

2.  Rescue Facts

Rescue Facts manufactures a red safety wrap that velcros onto your child's carseat straps for emergency services or the good samaritan.  A medical information insert is held with a clear cover on the backside of the wrap.  If you're in a car accident or without your child, rescue personnel will have instant access to information (medical conditions, medications, etc.) regarding your special heart baby.

3. Moby Wrap/New Native Baby Sling

Many new moms promote "babywearing" and studies have shown significant advantages of doing so.  Our CHD babes need as much calming and tenderness possible, so we love the idea of babywearing.  Two products our heart parents endorse are the Moby Wrap and New Native Baby Sling.  If you're expecting and don't own a sling/wrap, you might want to add one to your wish list! 

4. Zaky Hand

The Zaky Hand is ergonomically designed and supported by clinical evidence to significantly improve self-regulation and significantly decrease life threatening apnea and bradycardia.  The Zaky also gives parents peace of mind by providing developmental care and leaving a parent's scent when they cannot be cribside.  If you like the Zaky, but cannot afford it outright, the Zaky site reminds parents that you may ask your hospital staff to purchase The Zaky for your baby and add it to your baby's medical account. 

5. Boon Grass

Boon Grass is not only cute, but extremely useful to heart parents.  The flexible grass blades are perfect for drying oral syringes - or holding your breast pump accessories while they dry.

6. ZoLi Buzz B

With our heart babies on aspirin or even stronger anti-coagulants, we've all cringed when attempting to cut our infant's nails. We've heard a few stories of heart kids being knicked with clippers and bleeding quite a bit due to anti-coagulation therapy. Good news:  with the Buzz B it is impossible to injure your infant. It is battery operated and comes with cushioned nail pads to file your newborn/infant's nails down without the added stress of blood!

7. Wabbanubs

What's a WabbaNub you ask?  A hospital grade pacifier and a plush toy in one!  These little guys are adorable!  Wubanubs come in a variety of styles, so pick your favorite animal/color and double your infants comfort and security AND assist in a little extra shut-eye during hospitalizations.  We've heard many heart families rave about the WabbaNub and the large role they play interstage.

8. Baby ESP App

The Baby ESP App (which costs $4.99) has the ability to remind parents of medication schedules and tracks everything your baby does (i.e. bottles, sleep, nurse, diaper, growth, spit up, etc.)  Baby Esp can also track pumping schedules.  One of our moms informed us that "it really helps me out when the cardio or pediatrician asks me questions about feeds, diapers or spitting up over a week's-time."

9. Press in Adapters

These press-in adapters are lifesavers for our oral medication needs.  No more tilting the bottles or spilling meds.  The adapter fits snug into the medication bottle and allows you to tip the bottle upside-down for easy filling - something you don't think about while in the hospital receiving pre-filled syringes from the hospital pharmacy.  Many compounding pharmacies have them in stock; just ask them to hook you up!

10. Avagard Hand Sanitizer with Moisturizer

Avagard hand antiseptic is often found in the Cardiac Intensive Care Units, and sometimes in surgical scrub rooms.  It's a scrubless, waterless way to sanitize and it provides proven, persistent antimicrobial protection for up to six hours killing more than 99% of harmful bacteria within 15 seconds and is effective against MRSA and VRE antibiotic-resistant bacteria.  As a bonus, Avagard includes moisturizer which leaves less redness and less skin breakdown.  Heart moms love it!

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All of the above products were recommended by veteran HLHS parents. Feel free to check out the products above by clicking on their links which will take you to their respective product pages.

We hope you find a product, or two, or three that you find useful in your journey. Happy shopping for your new heart warrior!

A Heartfelt Donation: EZ Axcess

One of our signature care package items has always been our adorable infant hospital gowns, provided through the generosity of EZ Axcess.

Besides being super cute (who doesn't love cute smiley faces???), the specialized gowns are perfectly sized for infants and completely MRI and EKG compatible. Some of the hospitals our children receive treatment at provide infant hospital gowns, but many do not - and if they do, they certainly aren't this cute! Many hospitals simply leave newborn babies in diapers for most of their Norwood recovery, or put them in an ill fitting, way too big, children's hospital gown. Oftentimes, gowns have to be pulled over the infant's head, presenting a whole new challenge if the baby is on oxygen. Or they contain snaps, so have to be removed for MRI's or other scans.  In our search for infant gowns to include in our care packages, we were thrilled to stumble upon the adorable gowns made by EZ Axcess. When we discovered them, we contacted the company to find out whether they might be able to provide a discount to include the gowns in our packages.

To our utter astonishment, when owner Kathy replied to our inquiry, we learned that she and her husband started EZ Axcess, Inc. in their son David's memory, who passed away a few years prior.  David had Hypoplastic Left Heart Syndrome.  (Yes, we all got goosebumps when we learned it, too!)

Kathy and her sweet David.

Kathy and her husband immediately made a really generous donation of the adorable gowns - and haven't stopped since. We are beyond grateful to Kathy and the whole team at EZ Axcess, who began sending us gowns long before we even had our tax exempt status; and who, to date, has sent us almost 200 gowns! All of us at Sisters by Heart, and all of the families we serve, are so grateful for the generosity of EZ Axcess! Here are just a few of our heart warriors in their favorite gowns...

Thank you EZ Axcess for supporting our mission, from inception.  We feel blessed to have partnered with an amazing company and their compassionate and loving founders. 

If you love the EZ Axcess gowns, please let your children's hospital know that you'd like to see them carry this product.  Give them their web address - http://www.ezaxcess.com/ - and ask them to place an order so that all babies in the NICU/CICU can look as adorable as our little heart warriors.

SBH in the News: Life Without Limits

Here at Sisters by Heart, we are always thrilled to see our members in the spotlight, particularly when their time in the spotlight is spent spreading awareness for our special CHD children. One of our very own (our President, in fact!), Stacey Lihn, had just such an opportunity recently. Stacey, her husband Caleb, her sweet HLHSer Zoe, and her heart-healthy big sister Emmy were recently profiled in a video supporting President Obama's Affordable Care Act.

How cute is this HLHSer - and how wonderful is this family? What an incredible opportunity the Lihn family had, to let all of America in on what it looks like to raise a child with a life-threatening heart defect, to put a face to the 1 in 100 children born in America every year with a congenital heart defect, children relying on a healthcare system that can provide access to cutting edge health care. Whatever that system looks like, thanks to the openness of the Lihn family, millions of Americans will now think of our precious CHDers when they think about the healthcare crisis. Thank you, Zoe, for putting a beautiful face to CHDs.


The most amazing thing about this video is how it has gone viral - including being posted to both the President's and the First Lady's Facebook pages and being tweeted by the President! What wonderful coverage for CHDs!  A very special thank-you to the Lihn family for using this opportunity to thrust CHDs into the spotlight, and for allowing us to share their incredible video here.

Click here to learn more about Zoe's journey with HLHS.

*Please note that although members of Sisters by Heart might support President Obama and/or the Affordable Care Act, Sisters by Heart neither formally supports nor endorses the Affordable Care Act or President Obama.