Perinatal Hospice
Palliative Care Program

Cara Kelly

Lesley Sabourin – Perinatal Hospice Coordinator at Roger Neilson Children’s Hospice

Roger Neilson Children’s Hospice’s Perinatal Palliative Care Program is a specialized and comprehensive program for parents and families who learn during pregnancy or soon after birth that their baby has a life-limiting condition, news that leads to a time filled with heartbreak and tough decision-making.

Parents and families in these highly challenging situations during pregnancy face two equally difficult but unavoidable decisions to make: continue the pregnancy or end the pregnancy. When a life-limiting condition becomes known after birth, our care support helps parents and families navigate a difficult journey.

Regardless of the situation, we offer specialized care and support to parents and families. Like so much of what we do at Roger Neilson Children’s Hospice, our Perinatal Palliative Care Program focuses on families, memory-making and creating a legacy for every life, no matter how short.

Symptom Management

Some children’s life-limiting illnesses or side effects from treatments can cause unexpected or distressing symptoms. Our team of nurses and physicians specialized in pediatric symptom management can work with children and their families to help them understand and manage their symptoms.

Perinatal Loss Support Group

This program is available to any parent whose infant died after 20 weeks gestation up to the first 28 days of life, including death due to a life-limiting condition, stillbirth, death while in the Neonatal Intensive Care Unit, pregnancy interruption and induction where a palliative diagnosis existed for the child.

 

Pregnancy After Loss Support Group (P.A.L.S.)

Roger Neilson Children’s Hospice is committed to providing ongoing grief support to families following the death of their infant. Pregnancy after the loss of a baby is a time when families can benefit from increased emotional support by those who understand that it is possible to simultaneously feel anxious, happy, and sad during subsequent pregnancies. This group is open to pregnant families who have previously accessed Roger Neilson Children’s Hospice services.

 

Baby Charlotte

Mom and dad holding baby in pink shirt with their hands placed on babies head

‘Our stay at Roger Neilson Children’s Hospice wasn’t about dying. It was about living

Living life to the fullest, no matter how short

The worst possible news

Baby Charlotte’s parents, Anne-Marie and Tommy Warren received the worst possible news shortly following their daughter’s birth. Doctors determined that Charlotte had sustained a devastating brain injury during her birth, with only a small portion of her brain stem remaining, possibly not enough for her to know how to breathe. Broken-hearted, Anne-Marie and Tommy prepared to let their newborn daughter go.

A focus on making memories

The Warren family chose to have Charlotte’s breathing tube removed and to have family pictures taken so they could remember their time with their daughter. After an hour in the garden, her heart rate and breathing were slowing, but Charlotte was still breathing. When she opened her eyes and even started to hiccup, it was clear Charlotte wasn’t ready to go, so her family came to Roger Neilson Children’s Hospice.

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