Parents of babies in the NICU may have to make difficult decisions for their child's treatment. These decisions often must be made quickly. Parents may have a limited understanding of the total situation and are often under emotional, financial, and physical duress. Although in many ways final decisions are ultimately left to the parents, decisions and recommendations are based on information that come from medical staff. Understanding why medical staff might hold certain beliefs and make certain recommendations is important for parents when making decisions.
The doctor’s perspective
All the staff at the NICU do their utmost to make every baby well. It is their desire to see babies get healthy, be discharged from the hospital, and grow to be thriving children. The entire facility is designed to make this happen as much as possible.
At the same time, not all babies in the NICU will survive. Some who do may have severely disabling conditions. Doctors and nurses at the NICU therefore must balance the hope that the baby will get better with the possibility that the baby may not get better or may have a severely compromised outcome.
Initial reactions
Very few parents expect their baby to be born prematurely or with a health condition.
Initial reactions to a premature birth or an unexpected health condition vary, but are often highly charged and emotional. Some parents react with anger: they have done everything “right” during the pregnancy but they still find themselves in a difficult position, with their baby facing grave disabilities or even death. These emotions should be acknowledged. Some parents direct their anger at the obstetric or NICU staff and, while this may be understandable given the circumstances, it is often not very productive.
Almost every NICU will have a staff member trained to help parents get over their initial shock and help them direct their energies appropriately. Having a baby in the NICU is not easy and no one expects parents to breeze through the experience. The staff of the NICU are sympathetic to a parent’s distress, have seen it before, and have helped many parents before. Don’t wait to get support. Directing your efforts in a positive way will help everyone involved: your baby, you, and the professionals charged with taking care of your baby.
One certain thing: uncertainty
Following the parents’ initial reaction, the realities and the facts of their baby’s condition need to be explained. Parents should become as informed and knowledgeable about the situation as possible. Expectations about the course of events should be discussed with NICU staff as should the limits of what is medically and biologically possible.
Health-care professionals almost never speak in absolutes, which is usually what a parent wants to hear. Will my baby get over this and thrive? Will my baby live? Will my baby be disabled in some way? Although it would be reassuring to know the answer to these questions with absolute certainty, even if the answer is negative in some way, the doctors familiar with your baby’s case will likely only be able to answer at best with probabilities.
While statistics address premature babies of a certain age or babies with a certain condition as a whole, they do not address any specific baby in particular. In other words, a doctor at the NICU cannot look at a premature baby born at 26 weeks and know what the long-term outcome will be for that particular baby. At the same time, the statistics cannot be ignored, and well-trained staff who have seen and treated many babies are sometimes capable of getting a sense of the course of a baby’s condition.
Because this is the way in which doctors think and communicate, parents who are looking for absolute answers may get frustrated during what is already a difficult time.
Unfortunately, there is not really a way around this. As much as they would like to answer questions and predict outcomes with certainty, doctors and other health-care professionals in general understand that there are no absolutes. Sometimes a baby who appears to be well and progressing will suddenly and unexpectedly have a turn for the worse. Conversely, a baby who is not expected to do well can have a full recovery. While treatment in general will improve outcomes, the way in which outcomes are determined can go beyond the best efforts of the NICU and parents.
Probability and hope
When some parents are faced with a difficult situation in the NICU, understandably they hang on to the smallest hope. If doctors estimate a very low probability of a positive outcome for a baby in their care, parents often hold on to that low probability. While the staff in the NICU do not want to eliminate hope, they will encourage parents to have their hope framed within reality. There are several reasons parents may be encouraged in this manner. First, hope framed within reality helps parents prepare for the worst and may possibly encourage them to immediately make the best of a bad situation. Second, unrealistic hope can motivate parents to feel that they must do everything medically possible regardless of the situation. Again, this is understandable but not necessarily helpful to anyone, including their baby. For some parents, a desire to do something no matter what is an expression of love for their baby and a guard against future guilt: they fear that if all possible measures have not been taken and their baby has a bad outcome, they will not be able to live with themselves.
As one can imagine, decision making within this context can be very difficult indeed. The challenge is to consider what is in the baby’s best interest and to get an understanding of what the long-term implications are for the baby, the parents, and the rest of the family. Decisions, whether large or small, are best made without the influence of guilt or an unrealistic evaluation of the baby’s condition and probable outcome.
Getting to this point may not be easy and again, there are trained staff in the NICU to help parents understand the medical situation and the wider implications that situation is likely to have.