Perinatal Palliative Care
The H.E.A.R.T.strings Perinatal Palliative Care Program cares for families that have been given a life-limiting diagnosis for their unborn child and have made the decision to continue their pregnancy.
Our Message to You
Parents expecting a new baby have many hopes and dreams of having a perfect pregnancy without complications. However, the news of a life-limiting diagnosis can leave you feeling completely heartbroken and numb and at a loss of what to do. We are so sorry that you have to make these difficult decisions and we want you to know you are not alone. Unfortunately, many bereaved parents have walked a similar path. We would be honored to talk with you about how our Perinatal Palliative Care Program comforts infants who have been given a life-limiting diagnosis and their families, and be a support to you on this journey during your pregnancy and beyond.
What is Palliative Care?
Palliative care is not curative but provides relief and comfort for infants who are not going to get better. Care is child-centered yet also attends to the whole family, with the ultimate goal being an enhanced dignity during the child’s time on Earth.
The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for infants and their families, regardless of the stage of the disease or the need for other therapies. Additionally, palliative care optimizes patient function and helps with decision making. It can be delivered concurrently with life-prolonging care, aggressive comfort therapies or as the main focus of care.
Palliative care is not curative but provides relief and comfort for infants who are not going to get better. Care is child-centered yet also attends to the whole family, with the ultimate goal being an enhanced dignity during the child’s time on Earth.
The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for infants and their families, regardless of the stage of the disease or the need for other therapies. Additionally, palliative care optimizes patient function and helps with decision making. It can be delivered concurrently with life-prolonging care, aggressive comfort therapies or as the main focus of care.
“I know that some people assume that continuing a pregnancy with a baby who will die is all for nothing. But it isn’t all for nothing. Parents can wait with their baby, protect their baby, and love their baby for as long as that baby is able to live. They can give that baby a peaceful life – and a peaceful goodbye."
Amy Kuebelbeck, author, Waiting with Gabriel and A Gift of Time
If you have been given a life-limited diagnosis for your baby and would like to learn more about how the H.E.A.R.T.strings Perinatal Palliative Care Program can help, please contact us. We would be honored to be a support to you on this journey during your pregnancy and beyond.
"When we learned that our child had a life-limiting diagnosis half-way through the pregnancy, we were devastated, but we would go on to spend 17 precious hours with our son, Eli. Everything from my husband getting to announce "it's a boy!", to the birthday party we threw for him at the hospital, to the pictures Now I Lay Me Down to Sleep took for us, made our day with Eli so incredibly special. We look back on our time with him and our beautiful pictures and cherish every memory. We are grateful for the 17 short hours we had. Eli will always be our first-born and forever part of our family." |
Parent TestimonialLIFE LIMITING DIAGNOSIS
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Parent TestimonialTRISOMY 18
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"When I was 14 weeks pregnant, we found out our son, Caleb, had Trisomy 18. We decided to carry Caleb as long as God allowed. I am so glad we made that decision even though he had a life-limiting diagnosis. If we hadn’t, I would never know what he looked like or smelled like. I would have never felt his heartbeat, his hair or skin. I would have never heard him breathing. We wouldn’t have pictures of him around our house and our older son would have never met him. All Caleb felt was love from his family during his short time living. Caleb is an important part of our family, just like our other children." |
H.E.A.R.T.strings
Perinatal Palliative Care Program
Perinatal Palliative Care Program
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perinatal Palliative Care at northside hospital
The H.E.A.R.T.strings Perinatal Palliative Care program supports families through anticipating the possibility of a loss. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred, however the grief may begin at the time of diagnosis rather than at the time of death. Parents who have carried to term report that the experience of the diagnosis is the hardest part of the journey – even if the birth results in loss.
Our program offers an interdisciplinary team approach which involves the baby’s parents, family, physicians, nurses, chaplains, hospice, and others in order to provide comprehensive and compassionate care during the life of your baby. Whether you have weeks, hours, or minutes to spend with your baby, we aim to make every moment meaningful.
Palliative care is also called “comfort care” because the focus is not on treatments that cure or prolong life but on family-centered care that promote quality of life, no matter how short.
Our program offers an interdisciplinary team approach which involves the baby’s parents, family, physicians, nurses, chaplains, hospice, and others in order to provide comprehensive and compassionate care during the life of your baby. Whether you have weeks, hours, or minutes to spend with your baby, we aim to make every moment meaningful.
Palliative care is also called “comfort care” because the focus is not on treatments that cure or prolong life but on family-centered care that promote quality of life, no matter how short.
Diagnoses
We have provided palliative care support to families that have been given diagnoses such as, but not limited to: Acrania, Anencephaly, Congenital Cardiac Defects, Potter's Syndrome, Skeletal Dysplasia, Triploidy, Trisomy 13, and Trisomy 18.
How Can you Be Referred?
Once you have made a decision to continue your pregnancy and have communicated that to your obstetrician and perinatologist, you will need to meet with a neonatologist. Typically, your perinatologist arranges this appointment for you can set this up for you, or you can contact us to initiate that appointment. Following your neonatal consult, we will schedule a time to meet with you and your family in the H.E.A.R.T.strings office to make a plan of care for your delivery and the care of your baby, based on your wishes for your experience. We then work with Labor and Delivery, High Risk Perinatal, and Special Care Nursery staff to implement the family’s plan of care.
Any family who has been given a fatal diagnosis for their unborn baby can contact us directly to learn about resources and services. Please click on the button below to fill out the form for more information.
Any family who has been given a fatal diagnosis for their unborn baby can contact us directly to learn about resources and services. Please click on the button below to fill out the form for more information.
What to Expect at our meeting
Ahead of our meeting, we will send you a list of questions to consider, as well as the book, A Gift of Time by Amy Kuebelbeck and Deborah L. Davis, Ph.D., as a resource. Our meeting will include members of the H.E.A.R.T.strings staff, Special Care Nursery (NICU) and a chaplain. We will take time discussing your concerns and wishes, as well as asking you specific questions about things such as monitoring of the baby during labor, taking care of extended family who may be there, the collection of keepsakes and pictures, and much more. With this information, we will create a plan for your delivery which is communicated throughout the hospital.
Following our meeting, we will stay in touch to check on you and make any updates to your plan as necessary. It is our goal that you may be as prepared as possible, having made decisions ahead of time, so that you can solely focus on your time with your baby. We are here to guide and support you through this special journey.
Following our meeting, we will stay in touch to check on you and make any updates to your plan as necessary. It is our goal that you may be as prepared as possible, having made decisions ahead of time, so that you can solely focus on your time with your baby. We are here to guide and support you through this special journey.