HLHS Comfort Care

Our Story

Our sweet little Indy Rayena Thurm was born June 12, 2016 and lived a beautiful 21 hours and 36 minutes. She was born with HLHS, and nothing else; no chromosome or other genetic problems. We made the confident decision to parent her by letting her live her life naturally, without surgical intervention; we chose comfort care for her upon her birth. Her entire life was filled with so much love and All She Knew Was Love! To this date, we have absolutely no regrets in how we chose to parent her! To find out a little more of our story click on Meet Indy.

My hope for this website to provide hope to other families who are faced with a HLHS diagnosis for their unborn baby. There is no right or wrong decision, and each family must make the choice they feel is best for them. The one thing we all have in common is that we love our babies with the utmost love a parent can have; and our decisions are made out of the purest love for our child. My hope is to spread awareness that comfort care is an option and should be an option for HLHS babies.

Our community of choosing comfort care for our HLHS babies isn’t big in size, but our hearts are passionate about our decisions to parent them. To hear the stories of a few other families who chose comfort care for their HLHS baby, click on the names below.

Meet Leif

Meet Silas

Featured Pages

Please click below to view my featured pages.

A Letter to HLHS Moms

Dear mother who received a HLHS diagnosis for your sweet baby, You are strong. You are courageous. You are brave. You are a beautiful mama who is just trying to mother your child the best way you know possible with the utmost love you can have for your child. There is nothing you could have done to prepare yourself for what was to follow receiving […]

Honoring Our Babies

Listed are the names of babies whose parents chose comfort care upon learning of their HLHS diagnosis. Please email me your babies name and I will add him/her to the list. We will always remember our sweet babies and the beautiful life we gave them! Indy Rayena Thurm ~ 6/12/16 – 6/13/16 ~ 21 hours Silas Ragon Connelly ~ 5/28/14 – 5/30/14 ~ 56 hours Leif […]

Latest Posts

A letter to HLHS Moms

Dear mother who received a HLHS diagnosis for your sweet baby, You are strong. You are courageous. You are brave. You are a beautiful mama who is just trying to mother your child the best way you know possible with the utmost love you can have for your child. There is nothing you could have done to prepare yourself for what was to follow receiving […]

Posted: November 12, 2016
Under: Getting the diagnosis, Indy

Videos of Indy

We are blessed to have two videos of our sweet Indy, which you can watch by clicking below. Video One Video Two

Posted: November 12, 2016
Under: Indy

Meet Indy

In February 2016 our world changed forever. We went in for our routine 20 week ultrasound and expected to hear nothing but good news. We had 2 other normal pregnancies and healthy children, so our minds were far from ever thinking this time would be any different. At the end of the ultrasound our OBGYN told us that there was a problem. We went numb and […]

Posted: October 25, 2016
Under: Indy

What is HLHS:

HLHS is a congenital (present at birth) defect in which the left side of the heart does not form correctly. The left side of the heart is responsible for pumping oxygen-rich blood to the entire body except for the lungs Babies do well in the womb, but once they’re born it becomes a problem. There are 2 openings in the heart (PDA and PFO) that naturally close a few days after a baby is born, and when these close in a HLHS baby, oxygen-rich blood can no longer get to the body.

Occurrence:

About 960 babies in the US are diagnosed with HLHS per year, which is about 1:4300 babies. About 2/3 are boys, and 1/3 affect girls.

Causes:

Causes are unknown, however, some causes can be from genes, chromosomes, or environmental factors. However, most of the time the cause is unknown.

Treatment:

Without intervention, HLHS is fatal. Parents are often given 3 options: termination, palliative surgeries/transplant, and comfort care. It is important for parents to understand that surgery does not cure the baby. There is no cure in current medicine for HLHS. Surgeries prolong life until a transplant would be needed, which often (not always) occurs in the teen to college years. Babies who have surgeries will have lifelong complications, however, the severity of those complications can vary from child to child. Complications can include but are not limited to: chronic GI complications, chronic liver problems, chronic kidney problems, chronic lung problems, heart failure, chronic fluid retention in the lungs, abdomen, and lungs, arrhythmias, strokes, developmental delays, psychological problems, and death.

Cardiol, P. (August 27, 2016). Hypoplastic Left Heart Syndrome: Exploring a Paradigm Shift in Favor of Surgery. Pediatric Cardiology. DOI: 10.1007/s00246-016-1455-y. Retrieved from

Centers for Disease Control and Prevention. (2016). Facts About Hypoplastic Left Heart Syndrome. Retrieved from www.cdc.gov/ncbddd/heartdefects/HLHS.html

University of Iowa Health Care. (2016). Hypo plastic Left Heart Syndrome. Retrieved from

Books for HLHS Families

A Gift of Time is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby’s life will be brief. When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience―from the infant’s life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death. A Gift of Time also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive. Their moving experiences are stories of grief―and of hope. Their anguish over the prenatal diagnosis turns to joy and love during the birth of their child and to gratitude and peace when reflecting on their baby’s short life. Full of practical suggestions for parents and for caregivers, A Gift of Time also features the innovative concept of perinatal hospice and palliative care. Caring and thoughtful, the book helps parents embrace the extraordinary time they will have with their child.

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https://www.amazon.com/Gift-Time-Continuing-Pregnancy-Expected/dp/0801897629

Waiting with Gabriel is a memoir of the true story of parents who were told that their unborn baby had an incurable heart condition, confronting them with an impossible decision: to attempt risky surgeries to give their baby a chance at a longer life, or to continue the pregnancy and embrace their baby’s life as it would unfold, from conception to natural death. The unforgettable journey that ensued would change not only their lives, but also the lives of everyone who came in contact with them. The book also addresses larger issues including questions about heroic medicine; attitudes and practices regarding pregnancy and infant loss; and new dilemmas created by advances in prenatal testing, including what to do if a test reveals a fatal problem. Waiting with Gabriel has become a premier resource for families in this situation as well as families who have lost a baby under other circumstances, and it is now being used by hospitals and clinics across the U.S. and Canada. Also available as an e-book in Italian, titled “Aspettando Gabriel.”

waitingwithgabriel