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She works with families and children with congenital heart disease, as well as adults with congenital heart disease to help improve quality of life and establish heart healthy habits with managing congenital heart disease. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625458944262-FHDKPHL8VLAH1SP2HTER/unnamed5.jpeg SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE-PART II - Dr. David Schwartz Dr. Schwartz is a pediatric neuropsychologist at Texas Children’s Hospital and Associate Professor of Pediatrics at Baylor College of Medicine. He has long worked with children, youth, and young adults with congenital heart disease. Dr. Schwartz currently conducts neuropsychological evaluations of patients seen through the Texas Children’s Hospital Cardiac Developmental Outcomes Program and Heart Transplant Program, and he has completed research on cognitive outcomes in adult survivors of CHD. https://www.sistersbyheart.org/sbh-blog/attention-deficit-hyperactivity-disorder-in-children-and-youth-with-congenital-heart-disease monthly 0.5 2025-05-21 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625451741725-LINLHFHK3K6C72NG92R9/Yellow-Tinted+Tourism+Photos+Twitter+Header.png SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE- PART I - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625453547617-TVZJTANFPW9HYNMIZRKR/Doctor+Photo+Quote+Facebook+Post+%288%29.png SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE- PART I - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625455010175-RHF08IP3H6W2BYYYY5DF/Doctor+Photo+Quote+Facebook+Post+%289%29.png SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE- PART I - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625455050382-E9LL6O13BHKC0I8SEQDL/34DEB2C9-59CC-4E97-91D5-7549B1F8E8B5.jpeg SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE- PART I - Dr. Katherine Cutitta Katherine Cutitta, PhD, is an Assistant Professor at Baylor College of Medicine and serves as the dedicated clinical health psychologist for the Heart Center at Texas Children’s Hospital. She works with families and children with congenital heart disease, as well as adults with congenital heart disease to help improve quality of life and establish heart healthy habits with managing congenital heart disease. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1625455141152-O1AQLOFKWIVT0BN0Q6F9/unnamed5.jpeg SBH Blog - ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE- PART I - Dr. David Schwartz Dr. Schwartz is a pediatric neuropsychologist at Texas Children’s Hospital and Associate Professor of Pediatrics at Baylor College of Medicine. He has long worked with children, youth, and young adults with congenital heart disease. Dr. Schwartz currently conducts neuropsychological evaluations of patients seen through the Texas Children’s Hospital Cardiac Developmental Outcomes Program and Heart Transplant Program, and he has completed research on cognitive outcomes in adult survivors of CHD. https://www.sistersbyheart.org/sbh-blog/understanding-the-adhd-diagnosis monthly 0.5 2021-06-28 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1624680987187-X81EEQD4Z2SVDV88NHTS/Yellow-Tinted+Tourism+Photos+Twitter+Header.png SBH Blog - Understanding the ADHD Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1624683156914-MZNCUL08BJHI6E6W808E/Doctor+Photo+Quote+Facebook+Post+%286%29.png SBH Blog - Understanding the ADHD Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1624683333802-TT3RB3SDP902YJVDX1MM/Doctor+Photo+Quote+Facebook+Post+%285%29.png SBH Blog - Understanding the ADHD Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1624683456050-SVVC8U5FONL3RMO4YJOG/CA3F866C-99D4-45AD-9202-B4C2EFCEA916.jpeg SBH Blog - Understanding the ADHD Diagnosis - Dr. Mark Beidelman Dr. Beidelman is a pediatric neuropsychologist at Stanford Children’s Health. 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https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599058779217-7EYFF8Y25PT08YQCY4WZ/VOTE.jpg SBH Blog - Time to Vote! https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599058782185-H8CF8BPBHXIKV1FU7M6E/totebags.jpg SBH Blog - Time to Vote! https://www.sistersbyheart.org/sbh-blog/3p56nznh93vhncmu3b0oi1woz147l1 monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599059152534-K1BQ6YJ8JVFZTIBIMO9F/cathrine.jpg SBH Blog - 2nd Annual Sisters by Heart Avon Fundraiser https://www.sistersbyheart.org/sbh-blog/8tipuzznjk26fmq623anlazv74dxn5 monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/ba451l2la9w3zdz3784sw1ekwg83qc monthly 0.5 2020-09-03 https://www.sistersbyheart.org/sbh-blog/cztay80ofcrd9kuhl4rnchrdxl6q03 monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/jgnv895dcuphwli4soybb11d8jf0vj monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/15aef9zlpj6qnamc5nv40dpj8n5qs2 monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599059655048-4AZ8BEJ81IA6SJSVQC8X/Lily+billboard.jpg SBH Blog - Fontan Series: Lily's Story https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599059690466-RTECB1GLO68YQ0BI1CZO/Lily+Fontan.jpg SBH Blog - Fontan Series: Lily's Story https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599059858637-CVF5OQZNNGMG9Q5UBXHM/Lily+softball.jpg SBH Blog - Fontan Series: Lily's Story https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599059859727-YCTAJHMJT0QKWBOQRK38/Lily+HAM.jpg SBH Blog - Fontan Series: Lily's Story https://www.sistersbyheart.org/sbh-blog/lzx98jhth1nlqfuy8k11o4tny9mw48 monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/3x6rhnkfw7jo2z5qf8g3tfisc1glnk monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599062990141-X1H6CWBUB3QGLLAFRX8S/pre+op.jpg SBH Blog - Fontan Series: Aly's Story In pre-op on the day of her Fontan https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063010547-NSES6YPLDNJTDJZJ9CVJ/post+op.jpg SBH Blog - Fontan Series: Aly's Story A few hours post-op, on only a "whiff" of blow-by oxygen. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063086747-3H4FHFW9GJRHO8F87T51/post+op+day+5.jpg SBH Blog - Fontan Series: Aly's Story Day 6 post op, sitting in our hotel room (in the hospital) having a snack. You can see her drain tubes coming out from under her shirt. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063120377-EXLY1VT8QW68M2T5634F/day+8.jpg SBH Blog - Fontan Series: Aly's Story Day 8 - DISCHARGE DAY! On our way home. :) https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063166686-QMX8QYDSW9JZ3YNZI5TJ/day+10.jpg SBH Blog - Fontan Series: Aly's Story This is one of my favorite pictures of Aly. This was her 10 days after her Fontan. Playing outside like nothing every happened. https://www.sistersbyheart.org/sbh-blog/qaxt71j4l7ezgf6modlxln8jehpdqc monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063268774-H8LFQ01QV9BE0J51F660/Anya+pic+for+blog+use+this.jpg SBH Blog - A Heartfelt Donation: Medical Masks in Anya's Memory Karen's precious daughter, Anya https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063298520-769L32S6IFN7FP7BERB1/Karen+w+mask.jpg SBH Blog - A Heartfelt Donation: Medical Masks in Anya's Memory https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063321699-9N9QQALBTMSE6B6AZ3C7/image-asset.jpeg SBH Blog - A Heartfelt Donation: Medical Masks in Anya's Memory Karen's generous donation in memory of Anya https://www.sistersbyheart.org/sbh-blog/onogq8fmbq4xid6fh4eq3p9jgsmp6l monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063507017-IPLODX6RMP3B61TYRUR8/HospitalPackChecklist.jpg SBH Blog - Parent's Perspective: What to Pack for the Hospital https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063508953-VTMY3VL1PI5YXQV44M7H/HospitalPackChecklist2.jpg SBH Blog - Parent's Perspective: What to Pack for the Hospital https://www.sistersbyheart.org/sbh-blog/55yuuzd0brqo9e4dpn0o9duf2ggivq monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063838699-5GWZ5UF1FSWDWUFT53J6/Teri%2BFinley.jpg SBH Blog - Getting a 2nd Opinion: An Inpatient Perspective (Teri and Finley) https://www.sistersbyheart.org/sbh-blog/nly1yanmc4purip59qfksaecy0cj3n monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599063934289-58Q8QSM5Y556DC2M0ZBC/Jessica+and+Pax.jpg SBH Blog - Getting a 2nd Opinion: An Outpatient Perspective Jessica and Paxton https://www.sistersbyheart.org/sbh-blog/fbpbz78qeqsnif3kkjurppin5twlrh monthly 0.5 2020-09-03 https://www.sistersbyheart.org/sbh-blog/e26ex1cof0upxrxlg5abjigg6czxk0 monthly 0.5 2020-09-03 https://www.sistersbyheart.org/sbh-blog/hb7jo4oo4he5havovn1rv1big0cmxt monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/d91vdstw4p8x9k86aywu4f7r4q6c9y monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/cuqw8e9mj4wsvhrhvfvghjgvdql78x monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/fmebx4ah6li5y00phe8z1ukgbv1kl3 monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/ngxy8r3p3sd71n60ifs6wvczn4v6qz monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/1sn94t6nxa3bw1nm8nu8ugwmcbmjan monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/m7ojivt4sqz3riwowmsxb34h2txq46 monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/r49povniho0kuvi58wi8woptime1vz monthly 0.5 2020-09-02 https://www.sistersbyheart.org/sbh-blog/iq23sc4hjia6sjdfgtse5kx4vw1ddw monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599085316502-U5F38FPON8QVSKKD1RBT/Parenting+photo+-+need+permission.jpg SBH Blog - Practitioner's Perspective: We Can't Make It All Better https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599085323552-SVGAMMI2DNON48GB2DCA/parenting+blog.jpg SBH Blog - Practitioner's Perspective: We Can't Make It All Better https://www.sistersbyheart.org/sbh-blog/mrnwxkk8ov9i5sx5e23wman553hizd monthly 0.5 2020-09-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599064079397-7XHI1A1M4SFJRUBM3Y0C/thomas_vivien.jpg SBH Blog - It's February, Celebrate Black History Month! 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https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1595913257284-LCK2W5ZX761FHX7MOPDW/Supporting_Moms.png Home https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1595913054629-ZOHCWC5T58K0LAC3KSKT/Newly_Diagnosed.png Home https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1595913075722-Y8B7R3HHKTRABCO4J372/Fontan.png Home https://www.sistersbyheart.org/support-the-cause daily 0.75 2020-11-12 https://www.sistersbyheart.org/who-we-are daily 0.75 2025-08-21 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596002256228-U20PVS4NL3M3T5UCEC1T/download-1.jpg Who We Are Lacie joined Sisters by Heart in 2019 and has served as President since 2023. When her son, born with HLHS, developed feeding struggles, Lacie became actively engaged in awareness and advocacy within the pediatric cardiac community. She has been actively involved as a parent partner with the NPC-QIC since 2016. She has served as both a co-lead and executive sponsor of the dynamic group that created the Tube Weaning Toolkit and has been part of the NPC-QIC leadership team since 2018. Lacie has also been active in her local heart communities, serving on hospital patient and family advisory boards and focus groups. Lacie is passionate about empowering single ventricle families throughout their journey by relentlessly spreading a message of hope and by delivering support through education, collaboration and advocacy. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1608262129258-B1CV4OKXP64VGAY0P2QM/fullsizeoutput_ac91.jpeg Who We Are Kristen joined Sisters by Heart in 2020. She is a Bay Area, California mom to two boys, including her single ventricle warrior Bennett. After Bennett's prenatal diagnosis and birth in 2015, Kristen became passionate about advocating for CHD including the importance of support and connection for CHD families. She has been a member of the Single Ventricle Family Advisory Council at Lucile Packard Children's hospital since 2015, a participant in NPC-QIC, and enjoys mentoring new CHD families. Bennett's single ventricle journey has taught Kristen to celebrate both the big and small moments in life, choosing HOPE with each step of the way. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600881790316-R1OHLXFLU29A700J3H8C/Amy+Bennett+pic.png Who We Are A founding member of Sisters by Heart, Amy brings a wealth of financial and nonprofit experience to her role in the organization. Amy holds both her CPA and her JD, and provides financial and accounting expertise to churches, schools and other nonprofit organizations. She is an active member of the heart community, both as a parent partner of the NPC-QIC and a founding member of the Los Angeles Heart Moms support group. Amy now lives in rural north San Diego county, where she splits her time between homeschooling both her heart kiddo and his heart healthy sibling (by choice - most days, at least!), providing accounting advice to her clients and enjoying country life, complete with 2 acres and lots of animals! Amy blogs regularly at www.hopeforbabybennett.com https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1628708564279-H36WXLOGF7LBRVZVP2RV/Meg.jpeg Who We Are Meg joined Sisters by Heart in 2021 as the Director of Fontan Patients, bringing her knowledge and expertise as a patient with HLHS to the organization. Meg is fiercely passionate about empowering patients to take control of their healthcare and live their best quality of life. This passion led her to co-found, Single Ventricle Patient Day: Teens and Adults hosted by the Fontan Outcomes Network. In addition, Meg also serves as the patient lead of the Building Community and Engagement workgroup for the Fontan Outcomes Network as well as a committee member of the Transition/Lifelong Care Committee for Conquering CHD. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603898746627-XS5FKM73QGEU78LAYMTU/image0.jpeg Who We Are Jennie joined Sisters by Heart in 2014 bringing her technological expertise to the organization. Jennie is a parent partner with NPC-QIC, the co-lead of NPC-QIC Neurodevelopmental Learning Lab, and has presented at multiple NPC-QIC Learning Sessions. She is active at Lucile Packard Children’s Hospital at Stanford as the Single Ventricle Heart Center Family Advisory Council lead, and on the Hospital Wide Family Advisory Council. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600881936328-LCLECXYDJ33XHM96X4OA/Christie+Saunders.jpeg Who We Are Christie joined Sisters by Heart 2018 after serving in Linked by Heart for 2 years. She is a Southern California mom of four amazing kids, including her HLHSer, Bennet, who was born in 2012. She jumped head first into advocating for the heart community when Bennet was diagnosed with HLHS 24 hours after he was born and faced many setbacks in his recovery. She continues to be an active mentor to newly diagnosed families in her community and in the greater Los Angeles area. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/7d45948c-f0b4-4211-b094-7acf75a739a0/image3+%283%29.jpeg Who We Are Hannah joined Sisters by Heart in 2022 as Co-Director of Social Media. She’s based out of Florida and is the mom to two awesome kiddos. Hannah became a Heart Mom when her son, Weston, was prenatally diagnosed with HLHS in the winter of 2017. After Wes was born, she realized there was a need for CHD representation that’s not just informative but cute. Hannah advocates for Weston everyday and creates art that help other heart families advocate for and represent their heart warriors as well. She is bringing her artistic creativity to the social media team to help reach even more families! https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1641495599696-HV8HDKPHOSGQZZ46O87W/image0%284%29.jpeg Who We Are Amanda has Tricuspid Atresia, Atrial Septal Defect, Ventricular Septal Defect, Hypoplastic Right Heart Syndrome, and Cardiac Cirrhosis due to her Fontan. She is a Teen and Adult Coordinator for Conquering CHD - Ohio and a committee member of Health Disparities Committee for Conquering CHD. Amanda also helps provide peer to peer support for CHD patients to have safe space to talk https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/65106829-abb3-44d4-8f06-920f538857a4/Allison+McCoy+Headshot+Square%281%29.jpg Who We Are Allison joined Sisters by Heart in 2023. She is an Associate Professor of Biomedical Informatics at Vanderbilt University Medical Center. She received her PhD in Biomedical Informatics in 2010, has published more than 80 peer-reviewed journal articles, delivered more than 100 scientific presentations, and has enabled more than $41 million in extramural funding through her collaborative research, with 3 grants that she led as Principal Investigator. She is a mom to 2 children, including her son Charlie, who was born with a single ventricle in 2016. She is involved with NPC-QIC as a Parent Member of the Scientific Review Committee and with FON as the Parent Representative for Monroe Carell Jr. Children’s Hospital at Vanderbilt. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1614490492865-EW2TWK70O2ELVDE8UIVU/raven.jpg Who We Are Raven Norris joined Sisters by Heart in 2021 and serves as the Director of Content Development. She is a San Francisco, California mom to two girls, including her HLHSer, Isabel, who was born in 2015. Raven has been passionate about the heart community and spreading CHD awareness since Isabel was diagnosed 48 hours after birth. As a former federal prosecutor and in-house litigator for a global company, advocacy is second nature for Raven. She uses these skills to raise much needed awareness for CHD and to help Single Ventricle and other CHD Families gain access to key information so that they can confidently advocate for their child through this complex medical journey. Raven has been a participant at the NPC-QIC conferences and recently served as the featured parent speaker for the 2019 inaugural Pediatric Congenital Heart Association fundraiser in San Francisco. https://www.sistersbyheart.org/our-community-2 daily 0.75 2020-09-03 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598259637717-XT1319R7330G67YBNQXQ/pexels-tatiana-syrikova-3932687.jpg Our Community - An Open Letter To Fathers https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598282719128-YKIXTFPBU77GT7QWLR1G/Screen+Shot+2020-08-24+at+6.14.15+PM.png Our Community Kevin became a Heart Dad in June 2015 when he and his wife Kelsey welcomed their first child Kennedy. Kennedy was diagnosed with HLHS prenatally and has had both the Norwood and Glenn procedures. Interstage was extremely difficult, mostly due to continuous feeding issues, but Kennedy is now doing great - she is bright, energetic, and loves being outside exploring new things. The Mulvaney Family resides in Arizona and sees Dr. John Stock at Pediatric Cardiac Care of Arizona for Kennedy's ongoing care. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598282718417-DEIT5XFS1HM2KUKHE56U/Screen+Shot+2020-08-24+at+6.14.21+PM.png Our Community Trent joined in 2017 to help advocate for and provide resources specific to fathers. He has been actively involved in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) since 2012, serving on the Parent Advisory Council and multiple work groups. Trent is a teacher with background in anatomy and physiology and mental health. Through his involvement the parent group at Nationwide Children’s Hospital, he worked to develop a mentoring program and has assisted with multiple studies relating to parent stress. Trent continues to explore new support mechanisms to help fathers as a way to improve care. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598282721117-23Y0KC7LT1MF6BVJUYTT/Screen+Shot+2020-08-24+at+6.14.29+PM.png Our Community https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598280773482-EH56Y73JJ52J32U2FY6L/Screen+Shot+2020-08-24+at+5.51.12+PM.png Our Community Ady joined the team of Sisters by Heart in 2015 to serve as support for grieving HLHS families. After losing her son Hayden in 2012, Ady, together with her husband, founded Hayden’s Heart INC and has made it her mission and priority to help other heart families and keep her sons memory alive. Through his legacy, Hayden’s Heart INC sends out care packages to recently grieving heart families as well as provides many other supportive initiatives to the heart community. Ady is also behind founding 'Healing of the Heart, a Retreat for Mamas of Heart angels. The first retreat took place in 2015. This unique annual event was created to connect and support grieving heart mamas in ways the outside world cannot. Ady is honored to take on this role and hopes to help grieving families find ways to cope and provide some hope through their tragic loss. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1598280773067-5QLK0IJ9K54EOYIYEP1R/Screen+Shot+2020-08-24+at+5.51.20+PM.png Our Community Alanna lives in Massachusetts with her husband and three daughters. Her son, Benjamin passed away in January of 2016, from complications of Hypoplastic Left Heart Syndrome and Pulmonary Vein Stenosis. She strives to promote awareness for CHDs and help other parents find hope after loss. https://www.sistersbyheart.org/form-fontan daily 0.75 2024-02-05 https://www.sistersbyheart.org/practitioner-posts daily 0.75 2020-09-03 https://www.sistersbyheart.org/hlhs daily 0.75 2025-04-24 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050264120-5ZD10ZE5FMYY0U36S49Z/hypoplastic-left-heart-syndrome-stage1-illustration-773px_0.png HLHS - Stage I: Norwood Procedure Known as the Norwood procedure, this procedure usually occurs within a few days of birth. The video below shows Stage 1 of reconstruction of a heart with hypoplastic left heart syndrome. The shunt that is depicted is called a “Blalock-Taussig” shunt. Alternative types of shunts may be used based upon a child’s individual anatomy. For a small number of children, alternative approaches to the Stage I Norwood procedure may be recommended, such as heart transplantation or a combination of surgery and catheter-based treatment called a "hybrid procedure." Compared to 25 years ago, there are now many different options for treatment of this complex heart condition, and an individualized approach is taken for each and every child. Your doctor will explain each individual option, and why one particular approach might be recommended for your child. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050360232-QV9HU4QZ2P5F9OHKQRNF/hypoplastic-left-heart-syndrome-stage2-illustration-773px_1.png HLHS - Stage II: Glenn Procedure Known as the bidirectional Glenn or the hemiFontan, this operation typically is undertaken within four to six months of birth. The animation below shows Stage 2 of reconstruction of a heart with hypoplastic left heart syndrome. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050929674-RMLN65JUR95WZKQ0WHGB/hypoplastic-left-heart-syndrome-stage3-illustration-773px_2.png HLHS - Stage III: Fontan Procedure Known as the Fontan procedure, this operation typically occurs between 1 1/2 to 4 years of age. The animation below showsStage 3 of reconstruction of a heart with hypoplastic left heart syndrome using a technique called an “extracardiac Fontan.” The small hole intentionally placed to connect the conduit to the right atrium is called a “fenestration." In some children, a different modification, termed a “lateral tunnel fenestrated Fontan” is utilized. Your doctor will explain the differences and why one might be recommended for your child. Frequent surveillance in infancy and early childhood is important to minimize risk factors for the eventual Fontan operation. Your child will also need a customized series of diagnostic tests between the planned stages of surgery, and throughout childhood. Additional surgical or catheter therapies, or in rare cases heart transplantation, may also be recommended. After these operations: The right side of the heart will do what is usually the job of the left side - pumping oxygenated blood to the body. The deoxygenated blood will flow from the veins to the lungs without passing through the heart. https://www.sistersbyheart.org/our-care-packages daily 0.75 2025-12-12 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884279908-BJP36MSIUW3A2P04V41R/Fontan+_+Newly+Diagnosed+Hospital+Gown.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884282410-JN5MVAI6J08AX41OHWL3/Newly+Diagnosed+Bag+Close+Up.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884282470-VFGLJ3BV5IK1AHIM8IMB/Newly+Diagnosed+Care+Package+Basket.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884282528-JY1ZXTZRKFMLXYNKDJDB/Newly+Diagnosed+Care+Package+Closeup.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884282115-X426EMRTD302GA6UF9ZQ/Newly+Diagnosed+Onesie+_+Baby+Legs.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884266778-GKPVDDB3IQ07X8A9BKWG/Newly+Diagnosed+Papers.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884287635-0H5MJH1GO21HU4EBVTG8/Newly+Diagnosed+Tablescape.jpg Our Care Packages https://www.sistersbyheart.org/chd-collaborators daily 0.75 2026-03-30 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1606281504089-MVSQO5J7BIZ1ECIUWBCI/NPCQIC.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1607917743477-4WBRPPM0Z7HV8EPQ9DRZ/NPC%2BNew%2BLogo.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596989741746-LFTHDO2U11ALQ87T0F5V/Untitled-1.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1607913637733-CL65VCO7GZQCLDIMNUT0/hlhs2.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596989894235-TWT8W0YPHNMUYOSMUJ7Y/image-asset.jpeg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596989907136-J9WFJA6Z8LE5MV57HZ9F/6.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599178414726-APLWPHRWN75I95AO3WNA/Transplant+Families.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/59dd0dd4-fb20-4dc8-9cb1-960bbc856fd8/Global+ARCH+Logo_Color.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1599178553401-ZOB7FTN5T20AN84VLCVF/Heart+University.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/0c7ee6d5-0ae9-4ea8-ac00-0b6bc13d261f/Primary+Logo+-+Blue+%26+Sky%404x+%282%29.png https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600277920200-64ZV6MCZASW2WJ995TFJ/Action+Logo.jpg https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/010da306-9d1f-4554-9894-1ff791ba65ed/Primary_Navy.png https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/06c2f1dd-e049-4b4b-b730-8abb81ebd889/heartworks+logo.png https://www.sistersbyheart.org/request-a-care-package daily 0.75 2025-12-12 https://www.sistersbyheart.org/meet-our-kids daily 0.75 2025-08-21 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600882482764-CBMERXBB45G6GVEYVGIG/Benett+Saunders.jpeg Meet Our Kids - Bennet Bennet was postnatally diagnosed with HLHS 24 hours after birth and was airlifted to Mattel Children’s Hospital at UCLA. He underwent his first surgery at 5 days old and had a complicated recovery. He came home 100% tube fed at 8 weeks old. After his Glenn surgery at 4 months old he began to find his personality and strength. When Bennet was 18 months old he weaned from his feeding tube completely and began to make large strides in his development. By 2 years old he was walking, talking and loving life. He is now post Fontan (completed 2016) and doing amazingly well, all while keeping his parents on their toes! https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1608264373002-KTPGO3O87ZGCWASP3RGX/eylers-holiday-2020-0121.jpg Meet Our Kids - Bennett Bennett was prenatally diagnosed with Double Outlet Right Ventricle and Transposition of the Great Arteries. After his birth in 2015, he overcame many complications after multiple heart surgeries, including a stroke at five months old. Despite his rocky start, he enjoyed years of stability and growth between his Glenn and Fontan, living life as an unstoppable toddler. Bennett's Fontan surgery in 2019 brought another complicated recovery, battling chylothorax and fluid issues. However, with his perseverance and great medical team at Lucile Packard Children's Hospital, Bennett is a happy, healthy, energetic kid today. Bennett loves skateboarding, karate, his older brother Hudson, and going to the beach as much as possible. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600881995386-Z6T36HDLZWLWQL3A8RB4/Bodie+pic.jpg Meet Our Kids - Bodie Bodie was prenatally diagnosed with HLHS in 2009. Born with both HLHS and Catecholaminergic Polymorphic Ventricular Tachycardia (genetically induced arrhythmias), Bodie’s journey has had many unexpected bumps along the way. In addition to the three planned surgeries, Bodie has also had a shunt revision, 2 pacemaker surgeries, and a cardiac nerve surgery. Following the nerve surgery at 6 years old, Bodie unexpectedly went into heart failure and has been in heart failure since. Yet despite this, he is managed well with medication, lives life to the fullest and has not yet been listed for a transplant! All of his surgical care has been performed at Children’s Hospital of Los Angeles, and he is also jointly followed by the Heart Failure team at Lucille Packard Children’s Hospital. Although pacemaker dependent, he has boundless energy and keeps his family on their toes. He lives in San Diego with his parents, older sister Sierra, dog, 3 cats and 12 chickens. In his spare time, he loves building Legos and riding horses. He exudes joy, and the Bennett family is so grateful to get to witness his journey. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/dd9f0fe7-d242-4ff9-ab26-73f5bf57faa7/515681833_10110553021676853_4196288609922715510_n.jpg Meet Our Kids - Charlie Charlie was diagnosed prenatally with a double outlet right ventricle, d-transposition of the great arteries, hypoplastic left ventricle, mitral atresia, and pulmonic stenosis. He was born in 2016 and had a BT shunt at Texas Children’s Hospital when his home hospital was between surgeons, he had his Glenn at Ochsner Hospital for Children, and most recently had his Fontan at Monroe Carell Children’s Hospital at Vanderbilt after his family moved to Nashville. Charlie enjoys playing video games, taking ninjastics classes, watching scary movies, and eating sushi or Ramen. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600882407057-4ANTCM3ONDP42D06IQNJ/Dylan+pic.jpg Meet Our Kids - Dylan Dylan was prenatally diagnosed with HLHS and was born in 2012. He had a relatively uncomplicated Norwood with sano shunt and Glenn performed at Ochsner Hospital for Children that same year. After the Glenn, Dylan experienced feeding tube dependence and struggled to eat orally. However, by his first birthday, and through focused therapies, he was able to overcome his dependence and eat everything by mouth. In 2015, as our surgical center was in between surgeons, we travelled to Texas Children’s Hospital for his Fontan (EC, non- fenestrated). Dylan spent two years in physical therapy to overcome a leg clot (post Norwood) associated limb length discrepancy, but he does not let it slow him down. Dylan enjoys reading, writing books, and playing kickball, golf and video games. His favorite roller coaster ride is Thunder Mountain at Disney World. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1617384855482-EKDG3V6ON9SC7ROOFXO1/Izzy.jpg Meet Our Kids - Izzy Isabel (“Izzy”) was born in 2015 and diagnosed with HLHS 48 hours after birth. She was emergency transported to Lucile Packard Children's Hospital where she underwent her first surgery, the Norwood, at 6 days old. All three surgeries were performed by Dr. Frank Hanley at LPCH and although her recoveries have included some bumps, she is now post-Fontan as of April 2019, and a thriving fireball of energy! Isabel loves dance, art, and hiking in the many wonderful Bay Area parks. Most of all, she is a constant inspiration to her family and friends. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603898882379-YXL744K1VBRCQBWRWCEJ/image1.jpeg Meet Our Kids - Tyler Tyler was given a post-natal diagnosis and airlifted to Lucile Packard Children’s Hospital hours after birth in 2011. In addition to HLHS, Tyler had an intact atrial septum, and has subsequently been diagnosed with intractable epilepsy. Tyler had a feeding tube until 6 months old prior to transitioning to oral feeds. Now surpassing everyone’s expectations after a rough beginning, he is an active boy who loves sports - especially hockey. He had a heart transplant in 2024 and is currently doing well. The family’s goal for Tyler is for him to lead as "normal" a life as possible - allowing him to experience as many fun and wonderful things as he can. He is treated at Lucile Packard Children's Hospital at Stanford. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/336f0cf8-9e92-4882-9d29-9da1ea737749/image4+%282%29.jpg Meet Our Kids - Weston Weston was prenatally diagnosed with HLHS and Heterotaxy Syndrome at 22 weeks. Shortly after his birth in April 2018, he underwent his first open heart surgery, as well as an intestinal malrotation surgery. He spent a month in Wolfson Children’s Hospital’s CVICU. At four months old, Weston underwent his third surgery, the Glenn. After this surgery, he was thriving with the assistance of his amazing physical and occupational therapists. In the summer of 2021, Weston had his fourth surgery, the Fontan. He recovered quickly and was home to start school in August. He is on the autism spectrum and attends an ESE preschool program at the local elementary school. He sees his cardiologists twice a year and is continuing to thrive. In between appointments you can find him running at a local park, singing his favorite songs, and building block tower creations with his little sister. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1595999141563-Q29M1KTMGG3E2X4VB44Z/kids-pic.jpg Meet Our Kids https://www.sistersbyheart.org/blognewsletter daily 0.75 2024-02-05 https://www.sistersbyheart.org/scientific-community daily 0.75 2025-07-12 https://www.sistersbyheart.org/guides-toolkits-nd daily 0.75 2025-04-27 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066573004-DRATTILSICPGV6IKGHQB/Informational_Brocuhure.jpg Guides & Toolkits - SBH Brochure (English) https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596070187183-4SAAWICY0M5GLE990C2N/Informational_Brocuhure.jpg Guides & Toolkits - SBH Brochure (Spanish) https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066609546-VCZ4FEZR3G9L8UFXZ5PC/crop-parents-communicating-with-newborn-baby-in-arms-3845341.jpg Guides & Toolkits - Single Ventricle Journey Guide https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066626607-ZYHQLKO4OLG0LNQP424S/Book_of_hope.jpg Guides & Toolkits - HLHS Book of Hope https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066795346-AUN3NI660UVPO0MM1T50/Prenatal_Final_080917.jpg Guides & Toolkits - Confronting diagnosis https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066707774-X5AM019K4XVYV9JVN4UP/Interstage_Final_080917.jpg Guides & Toolkits - Coping Interstage https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066661931-XZ08F17NWMJWLSGLHXQK/PostGlenn_Final_080917.jpg Guides & Toolkits - Adjusting post glenn https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596990631260-8GC2Q5ZTWSJZOD0G1RCK/TUBE_FEEDING.jpg Guides & Toolkits - Tube Feeding Guide https://www.sistersbyheart.org/single-vent-heart-disease daily 0.75 2025-05-21 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600883527147-BC4PF63H26AY1YBE6FM7/3E5C1515-5F1E-4ACB-81DA-29DB6CD34A16.JPG SV Diseases https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603755828304-8XBJ620526X2CTFW7S7R/Tricuspid+Atresia.PNG SV Diseases - Tricuspid Atresia In tricuspid atresia, blood can't flow from the right atrium to the right ventricle because the valve between them is missing. This condition often includes a smaller than normal right ventricle, as well as an atrial septal defect and, in some cases, a ventricular septal defect. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603755975342-B58X0F0O5OFWARMY6BLL/Double+inlet+left+ventricle.jpg SV Diseases - Double Inlet Left Ventricle Normally, the tricuspid valve leads into the right pumping chamber (ventricle), and the mitral valve leads into the left ventricle. These valves act as 1-way doors, allowing blood to flow from the atria to the ventricles without letting blood back into the atria. A wall called the septum separates the ventricles. In babies with this defect, both the tricuspid valve and the mitral valve let blood flow into the left ventricle. Only the left ventricle works. Because the right ventricle is not being used, it is small and not well developed. This is also called a single-ventricle heart defect because children with this defect only have 1 ventricle in their heart that works. Single-ventricle defects are some of the most complex heart-related birth defects. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603756028371-79FNVRLUE9E4WHLIE83E/Double+outlet+right+ventricle.PNG SV Diseases - Double Outlet Right Ventricle In double-outlet right ventricle, the aorta and pulmonary artery connect partially or completely to the right ventricle. A hole also exists between the two ventricles (ventricular septal defect). In a normal heart, as shown on the left, the pulmonary artery connects to the right ventricle and the aorta connects to the left ventricle. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603756226312-40IIJ28YKEPVV6TPZ12U/Atrioventricular+septal+defect.PNG SV Diseases - Atrioventricular Canal Defect Atrioventricular canal defect includes a hole in the wall between the heart's chambers and flaws in the heart's valves. This defect is classified by whether it's partial, involving only the upper two chambers, or complete, in which blood can travel freely among all four chambers. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1603756286486-VGBS1XST0F1E7W9ZQU36/Pulmonary+Atresia.PNG SV Diseases - Pulmonary Atresia with Intact Ventricular Septum In pulmonary atresia, the valve that lets blood flow from the heart to the lungs isn't formed properly. Instead, some blood may reach the lungs via a temporary connection (ductus arteriosus) between a baby's aorta and the pulmonary artery. Some babies born with pulmonary atresia may have a small (hypoplastic) right ventricle. https://www.sistersbyheart.org/guides-toolkits-fontan daily 0.75 2022-01-25 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1606273538126-T4VEJDCAKTY7AQ9F0G9F/FON_Bulletin_RaisingToddler.jpg Guides & Toolkits - Raising A Toddler https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1606273555977-MPS86ZLA4FVJUIX5KB9M/FON_Bulletin_Preparing.jpg Guides & Toolkits - Preparing For Fontan https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1606273575564-8U5OERETZFOGGLO7GNR2/FON_Bulletin_Hospitalization.jpg Guides & Toolkits - Fontan Hospitalization https://www.sistersbyheart.org/donate daily 0.75 2024-02-08 https://www.sistersbyheart.org/our-care-packages-2 daily 0.75 2020-11-18 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884463493-DVHKCL5X7RMHR2SXQCAI/Fontan+_+Newly+Diagnosed+Hospital+Gown.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884468756-RMMPKSS325SGMH3C3UOE/Fontan+Backpack.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884467494-NGZFHVVPQX6QBVA0R23N/Fontan+Cape+_+Mask.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884463444-BAIRS7OPEL0VQAQHDII2/Fontan+Coloring+Book+Close+Up.jpg Our Care Packages https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1600884438208-IJNNDEPGV1ALALBM5FV5/Fontan+Superhero.jpg Our Care Packages https://www.sistersbyheart.org/blog daily 0.75 2020-08-12 https://www.sistersbyheart.org/guides-toolkits-2 daily 0.75 2025-05-02 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066573004-DRATTILSICPGV6IKGHQB/Informational_Brocuhure.jpg Guides & Toolkits - SBH Brochure (English) https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596070187183-4SAAWICY0M5GLE990C2N/Informational_Brocuhure.jpg Guides & Toolkits - SBH Brochure (Spanish) https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066609546-VCZ4FEZR3G9L8UFXZ5PC/crop-parents-communicating-with-newborn-baby-in-arms-3845341.jpg Guides & Toolkits - Single Ventricle Journey Guide https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066626607-ZYHQLKO4OLG0LNQP424S/Book_of_hope.jpg Guides & Toolkits - HLHS Book of Hope https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066795346-AUN3NI660UVPO0MM1T50/Prenatal_Final_080917.jpg Guides & Toolkits - Confronting diagnosis https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066707774-X5AM019K4XVYV9JVN4UP/Interstage_Final_080917.jpg Guides & Toolkits - Coping Interstage https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596066661931-XZ08F17NWMJWLSGLHXQK/PostGlenn_Final_080917.jpg Guides & Toolkits - Adjusting post glenn https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596990631260-8GC2Q5ZTWSJZOD0G1RCK/TUBE_FEEDING.jpg Guides & Toolkits - Tube Feeding Guide https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1607574497101-P4T0XMFQXFPEJ4NY7418/FON_Bulletin_RaisingToddler.jpg Guides & Toolkits - Raising A Toddler https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1607574540259-VZ9D93OK4IME5ITS2I58/FON_Bulletin_Preparing.jpg Guides & Toolkits - Preparing For Fontan https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1607574610771-RFFX0O46BIF827EWM7UK/FON_Bulletin_Hospitalization.jpg Guides & Toolkits - Fontan Hospitalization https://www.sistersbyheart.org/form-test daily 0.75 2020-11-09 https://www.sistersbyheart.org/all-about-hlhs-1 daily 0.75 2021-09-20 https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050264120-5ZD10ZE5FMYY0U36S49Z/hypoplastic-left-heart-syndrome-stage1-illustration-773px_0.png All About HLHS (Copy) - Stage I: Norwood Procedure Known as the Norwood procedure, this procedure usually occurs within a few days of birth. The video below shows Stage 1 of reconstruction of a heart with hypoplastic left heart syndrome. The shunt that is depicted is called a “Blalock-Taussig” shunt. Alternative types of shunts may be used based upon a child’s individual anatomy. For a small number of children, alternative approaches to the Stage I Norwood procedure may be recommended, such as heart transplantation or a combination of surgery and catheter-based treatment called a "hybrid procedure." Compared to 25 years ago, there are now many different options for treatment of this complex heart condition, and an individualized approach is taken for each and every child. Your doctor will explain each individual option, and why one particular approach might be recommended for your child. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050360232-QV9HU4QZ2P5F9OHKQRNF/hypoplastic-left-heart-syndrome-stage2-illustration-773px_1.png All About HLHS (Copy) - Stage II: Glenn Procedure Known as the bidirectional Glenn or the hemiFontan, this operation typically is undertaken within four to six months of birth. The animation below shows Stage 2 of reconstruction of a heart with hypoplastic left heart syndrome. https://images.squarespace-cdn.com/content/v1/5f1b4f611f2eee5a5d06154b/1596050929674-RMLN65JUR95WZKQ0WHGB/hypoplastic-left-heart-syndrome-stage3-illustration-773px_2.png All About HLHS (Copy) - Stage III: Fontan Procedure Known as the Fontan procedure, this operation typically occurs between 1 1/2 to 4 years of age. The animation below showsStage 3 of reconstruction of a heart with hypoplastic left heart syndrome using a technique called an “extracardiac Fontan.” The small hole intentionally placed to connect the conduit to the right atrium is called a “fenestration." In some children, a different modification, termed a “lateral tunnel fenestrated Fontan” is utilized. Your doctor will explain the differences and why one might be recommended for your child. Frequent surveillance in infancy and early childhood is important to minimize risk factors for the eventual Fontan operation. Your child will also need a customized series of diagnostic tests between the planned stages of surgery, and throughout childhood. Additional surgical or catheter therapies, or in rare cases heart transplantation, may also be recommended. After these operations: The right side of the heart will do what is usually the job of the left side - pumping oxygenated blood to the body. 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