Our Community

Supporting and Linking HLHS Families Across the Country

Linked by Heart advances the mission of Sisters by Heart by providing additional regional, local support, and resources to families affected by Hypoplastic Left Heart Syndrome. Linked by Heart aims to foster connections amongst the HLHS community.

With a significant increase in the care package nominations received since our formation in 2010, the Sisters by Heart Board developed the concept of “Linked by Heart” in an effort to provide more assistance for the Hypoplastic Left Heart Syndrome (HLHS) community. Linked by Heart complements our mission of spreading HOPE and support to families walking the path from HLHS diagnosis through surgical interventions and beyond.

Linked by Heart is a collaborative effort between Sisters By Heart and additional HLHS mothers known as “Regional Coordinators”. The Regional Coordinators are moms from across the nation who’ve walked in your shoes and want to help you locate other families in your same situation via Regional Facebook Groups and a searchable database for networking.

With the launch of Linked by Heart, families across the HLHS spectrum can connect, from those prenatally diagnosed to “angel moms” and everyone in between. Any family affected by HLHS is invited to register with the Linked by Heart Network and/or join our Regional Facebook groups.

Brothers By Heart

Dear Fathers,

Your child’s diagnosis was a shock to a normal life. The struggles you will face are real and will present some of life’s greatest challenges. Yet, as a father, you will be presented with some very unique experiences that are often not as obvious or easily recognized by others. Furthermore, the support mechanisms and coping strategies to help you along this journey are not well established, leaving many to figure it out on their own.

Throughout pregnancy all of the attention is focused on the health of the mother and child. After birth, the mother’s instinct takes over to help protect and provide for a fragile child and the medical staff often defers to them as the best source of information. Thus fathers often feel sidelined and underappreciated in the care of their child.

Additionally, the typical fatherly role is to be strong and provide support, even when you are struggling yourself. It is not uncommon to hide your emotions, cover up your need for help, and struggle silently. Luckily, you are not alone, there are many other fathers who blazed this path before you. You are just as valuable in your child’s life as the surgeon who performs their operations. The role you play is unique and irreplaceable.

While this is not an easy road to travel and many find it difficult to express how they are feeling, continue to involve yourself in the process. Talk to your medical providers and ask questions without reservation. Find ways to support the best mom your child could have. Look for triumphs and joys every day, you will be surprised how many there are. Most importantly, take care of yourself to help provide the best care possible.

Those who have come before you can provide valuable resources and support. We have walked in your shoes and come through dark times, only to become better in the end. Loneliness is present early, but the heart community is strong and the connections made within it are unbreakable. We fathers are here and ready to support, please reach out when you are in need of help from someone who understands.

Sincerely,

Brothers By Heart

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 con… — 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.

Hope After Loss

In November of 2011, my unborn son was diagnosed with HLHS. Soon after, I received a care package from Sisters by Heart and it was and still is something I will always remember. I remember the hope that package gave me- in a time I felt so alone- so hopeless and helpless. I remember reading about some of the founders' heart warriors and found hope in knowing that even though these children had open heart surgeries and spent months in the hospital, they were making it and thriving and that gave me so much hope that my child would be ok through this too.

But….what happens when your HLHS’er dies??

Because as unthinkable as it may be, it happens- and it happened to me.

That particular hope is gone. A large piece (if not all) of your life and heart is gone with that child and you are once again left with feeling hopeless that life will ever go on for you and your heartbroken family.

Sisters by Heart wants to continue to provide those grieving families with HOPE and support- not the same hope as before- how could it be- but with a new sense of hope as you and your family try to navigate through this unbearable new journey and life you have been unwillingly thrown into.

My son has been gone since 2012- so please know it took me some time to get where I am- and please take your time- but there is hope that down the road you will survive an entire day without crying, that you will have happy days- not just happy moments. There is hope that you will smile again- really truly smile again. There will come a time when you will see some child that should be the same age as your child and not want to turn the other way sobbing in tears- but instead gaze at them with a half smile on your face imagining that is instead your child running through those sprinklers on a very hot summer day. And then the next time you see a child the same age you may need to walk away in tears- and that’s perfectly ok. But there is hope that someday you will take a deep breath without your chest hurting as you try to inhale. You will drive pass the funeral home without breaking out in tears. You will find an old syringe under the fridge and smile. You will somehow survive this. It will be the hardest form of survival on the planet - and we are all a work in progress- but there is hope that you will somehow survive.

Because though you’ve been dealt life’s greatest tragedy that exists, your warrior left behind with you the greatest gift. Because of what you and your child went through you will never again take one day for granted. You will appreciate every single moment of your own, your other children’s’ or loved ones lives. You know what it is like to go through and experience the most unimaginable pain- and so you love and live harder than anyone you know.

And along with this gift left for you, there is also hope that life will become bearable again someday. It will never be the same - it may never feel full or make sense - and of course will never be what you had planned it out to be - but there is hope that you will one day have more good days than bad- more smiles than tears.

Please know while you try to figure out a way to get to this point, and even once you have reached it, we are here to support one another and are here to provide love and care for your broken heart.

Ady Dorsett, Mom to Hayden