Offering support for parents
JOANNE LAUCIUS asked Karen Dryden-Kiser and Sonia Baruzzo about their work with the parents of extreme pre-term infants. Dryden-Kiser and Baruzzo are social workers in obstetrics, perinatal and the neonatal intensive care unit at The Ottawa Hospital’s Gen
Having an extremely premature infant must be a shock. Typically, how do parents react to this unexpected turn of events?
Having an extremely premature infant is very difficult for most parents. They are put in a situation which is beyond their control and therefore not ideal. It takes a very emotional toll on them, often experiencing feelings of shock, denial, sadness, guilt, anger, a sense of “failure” or being “cheated” out of a healthy pregnancy and ideal birth.
As social workers, we help parents to work through these emotions and help to provide them with coping strategies, as this proves to be a long journey for them. How much time do the parents have to make a decision on either intensive care or palliative care? How do you lay out the options?
Each case varies, so it is difficult to establish a “time line” for decision making.
In some situations, a woman can be referred to the high-risk pregnancy team who will monitor closely and will keep her informed if she is at high risk for an extreme premature birth. This provides some time for the parents to come to terms with the potential outcomes and take time to consider their decision.
In emergency situations, we often see that there is no time to emotionally prepare for an extremely premature birth and this can create a situation of crisis. Parents need to make an informed decision, and we support in helping the parents get to that place by ensuring they are connected with the multidisciplinary team (the neonatal intensive care unit, including the neonatologist and maternal fetal medicine) so that they can gather as much information on their baby’s health status and possible future outcomes.
We encourage parents to ask questions to assist them in their decision-making process.
Often in these times of crisis, parents may turn to their faith and family for guidance to help make their decision. To provide spiritual support we offer a referral to our spiritual care team, especially in cases of palliation. When considering palliation we make families aware of the support available through Roger’s House. What sorts of questions do parents have about longterm survival? Is there a lot of awareness about the likelihood of impairment?
Parents are ultimately concerned about their infant’s quality of life, happiness and well being This often entails them asking about future outcomes such as their infant’s level of functioning, independence,
developmental challenges and what supports are available to assist them as a family in supporting a child with potentially special needs.
There’s been a lot of ethical debate about “the edge of viability.” Are there any ethics resources that are helpful?
At The Ottawa Hospital, we have an ethics team that is available for consultation with the medical teams and parents. Is there an Ottawa support group for the families of extremely preterm infants?
At this time there is no Ottawa regional support group available.
However the Ottawa Hospital has recently piloted a parents’ education group for families whose infants are admitted to the neonatal intensive care unit or the special care nursery.
These sessions allow the opportunity for parents to gather and discuss their experience, coping strategies while introducing topics specific to premature infants. We hope to run these groups monthly beginning in the fall.