Awareness and decision-making

Due to the advance in medicine, premature children can be saved and develop as healthy ones. Parents are rarely ready for the shock and stress they experience at the birth of the premature child and his/her prolonged stay in the neonatal intensive care unit. This may change dramatically the transition to parenthood and lead to long-term effects for both the child and the parents. In these circumstances, it is extremely important to have timely and adequate information.

What does the first information about your baby contain?

The doctor informs you about the time your baby was born, his/her sex, birth weight and height. Then an evaluation of his/her condition at birth follows (if the baby cried out, can he/she breathes independently, is he/she rosy etc.); what resuscitative actions have been performed in the delivery room; where was he/she placed after leaving the delivery room; what procedural actions have been performed; the child’s condition at the moment. The doctor reports the results of the tests made, informs about the tests that are to be made and the treatment given to the baby. Short-term perspectives of the baby’s condition are outlined at the first opportunity, as well as the expected problems with the child. If you have questions or have failed to understand some part of this, the doctor will answer and clarify things. The mother/father has the right to see their child, touch him/her and have contact with him/her for as long as the doctor in charge decides for each individual case. Preparation is needed to accept the child’s appearance and the specifics of the unit (incubators, monitors, ventilation apparatuses, alarms), as well as the medical staff’s actions.

How can I receive regular information about the child?

Ask your doctor and he/she will let you know. Information is provided daily at a time specified in the neonatal unit’s internal regulations. There is also a practise of putting a sign at an accessible and visible place, which should contain at least the following information: the time range for providing information and a valid telephone number of the unit. Information about the child’s condition can also be received on the phone at designated times. The parents have the right to receive information on the phone. Information can be given to another person only with the parents’ consent. Only the doctor in charge or on duty gives information about the child’s condition. The nurse can give information only to the amount determined by the Head of the NICU.

Information you will receive before your baby’s discharge

• How often to feed your baby and what amount of food he/she needs.
• Condition of the child upon discharge. Organising follow-up checks of the child’s psychomotor development, eyesight and hearing – where, when and with what medical specialists.
• Follow-up treatment – for example, prevention of rachitis, late anaemia in infants etc.
• Terms for conducting immunisations and need for additional immunisation.

Upon the child’s discharge, the parents receive an epicrises containing the above information. In most neonatal units, it is a practice for a mother to be hospitalised before her baby’s discharge. She participates in the care for her child – bathing, breastfeeding techniques, ways of holding the baby during and after breastfeeding, techniques of feeding with a nursing bottle, etc. This makes her useful and more confident and prepared for parenting her baby at home. It is useful for parents to receive information about the existing services and mutual assistance groups, as well as about national parents’ organisations. If you do not receive such information, do not hesitate to ask for it.

Decision-making

The most important part of being a parent is to seek to do the best for your baby. In the situation you are in, the best thing for your baby is your being well informed about what you are faced with and your being able to make a choice about medical care, if necessary. The doctors and nurses want the best for your baby, too. During your baby’s stay in the hospital, doctors and parents should be a team because their aim is the same – ensure the best possible care to the child.

The doctor provides the necessary amount of accurate information that is acceptable for the parents, which includes their child’s health status, methods of treatment, including alternative ones.

Doctors are professionally responsible to:

• explain everything that happens to your baby;
• to make sure that you understand the different situations;
• to make joint decisions about the care for the baby.

Following these steps and your approval are called ‘informed consent’. As parent representing the patient (your baby), you have the right to participate in the decision-making about the performance of diagnostic procedures, therapeutic manipulations, consultations, transporting the baby to another hospital and others. It is your right to refuse or want changes in your child’s treatment without being afraid of negative attitude and negative effect on the childcare quality.

Many routine procedures like blood tests carry a low risk for the baby. They do not require consent. In case of newborn children who are in condition threatening directly the child’s health and life, the doctor has the right to perform resuscitative actions without the parents’ consent. In this situation, doctors have to explain what has happened at the first opportunity.

Questions you can ask when the doctor informs you about the need for a certain kind of treatment, manipulation, operation or medicine:

The decision-making shared between doctors, medical staff and parents is the best thing for your baby. Do not hesitate to ask about everything related to your child’s treatment – tests, procedures, medicines, etc. If you feel uncertain or if a difficult decision should be made, seek a second opinion.

After the birth, the doctor or the nurse will present you a document: ‘Informed consent of the newborn child’s parent/guardian for intensive treatment or special care’. Read it carefully, get yourself familiar with the information concerning your baby and if you have questions, call on the neonatologist for explanation.