Resources for Bereaved Parents
It can be difficult to accept with advanced medical knowledge and modern technology that sometimes babies don’t do well or have conditions which cannot be cured. The medical team endeavor to speak with both parents in private as soon as they realise that there are problems with the infant’s health and they do their utmost to provide the family with the support they need at this difficult time. The loss of a child is one of life’s most traumatic events. For those left behind, whether it be a single parent, a married couple, siblings, grandparents or friends of the family, the grieving process is a difficult, unanticipated journey. Grief does not discriminate and it does not follow a set pattern for each person.
While leading causes of infant death in the first year include birth defects, premature birth/low birth weight and sudden infant death syndrome (SIDS), knowing the reason for a child’s death rarely provides a grieving family with the comprehensive comfort they need.
We know that bereaved families long for others to acknowledge the importance and life of their child no matter how old the baby was at birth and regardless of how long the baby lived. Having a strong support network where feelings can be shared in a safe and open manner is paramount to the grief process. Sharing memories, hopes, dreams and disappointments is an important part of the grieving and healing process.
The following is a list of some of the more common physical and emotional responses that a grieving parent may experience:
- A need to tell and retell and remember things about the child and the details of the child’s death.
- Loss of appetite or increased appetite leading to overeating.
- You feed as if a part of you has died.
- Restlessness, difficulty concentrating, poor memory.
- Difficulty with decision making.
- Searching for or expecting the child who died to walk in the door or call on the phone; hearing the child’s voice; seeing the child’s face; dreaming about the child.
- Wondering if you are losing your mind.
- Going through the “motions” of every day living.
- Physical exhaustion, insomnia, lack of desire/motivation to get out of bed.
- Feeling fragile and vulnerable.
- Avoiding social interactions.
- Feelings of guilt and an awareness of aspects of the relationship that were less than perfect.
- Tightness in the throat, heaviness in the chest, a “lump” in the stomach.
- Respiratory reactions – excessive yawning, gasping, sighing, hyperventilating.
- Constantly feeling cold.
- Difficulty going on holidays or away without missing the child.
- Difficulty coming home without missing the child.
- Everything reminds you of the child.
- Finding it hard to cope with the changing seasons.
- A feeling of numbness or an empty feeling that seems indefinable.
- Crying at unexpected times and experiencing mood changes for minor reasons.
- Continually searching for answers.
- Questioning or challenging your faith.
- On going difficulty with birthdays, anniversaries, weddings, holidays.
- Feeling unable to cope all the time.
- Sleeping all the time.
- Depression and grief symptoms are very similar, it is important that you seek advice from your GP if you have concerns about your mental health.
- Record how you are feeling and use your journal to express feelings you can’t express face to face.
- A balanced diet, rest and moderate exercise are especially important at this time.
- Talk to your healthcare professional if you have lost your appetite.
- Be gentle and patient with yourself, you will not be able to do your what you normally do. Grieving is exhausting and can affect our mental and physical health.
- Avoid major decisions if possible (changing residence, changing jobs, etc.) for at least a year.
- Avoid making hasty decisions about your child’s belongings. Do not allow others to take over or rush you. Do it at your own pace when you are ready.
- Cry freely as you feel the need. It is a healthy expression of grief and releases tension.
- Talk openly about your feelings or find other ways to express your emotions (writing/art).
- Find a good listener, someone who will just let you talk.
- Often talking to another parent who has lost a child can help as they are on the same journey as yourself, just a little bit further down the road.
- If you feel unable to cope, are anxious all the time or having difficulty managing the intense emotions you are experiencing, don’t suffer in silence it might be helpful to seek the advice from your GP, healthcare professional or a professional counselor.
- Take lots of photographs of your infant.
- Ask the NICU staff to take hand and foot prints of your infant as keepsakes.
- Ensure that you and your partner have as much bonding time with your infant as possible (both before and after he/she passes away).
- When burying your infant, consider purchasing 2 identical soft toys, one to bury with your infant and the other to remember him/her by.
How to tell siblings about a neonatal death
- Be open and honest.
- Use clear, simple and concise language.
- Provide books specifically written for siblings experiencing grief.
- Encourage siblings to ask questions.
- Expect behavior changes e.g. anger, confusion, separation anxiety, regression.
- Ensure that your child’s school is aware of the death.
- Consider seeking help from a counselor.
We encourage those who are grieving the loss of a child to seek out others who understand the emotions you are feeling and we would like to recommend some organisations that may be able to provide you with the tools you need to face the difficult days ahead. This is in no way a comprehensive listing, but it is a place for bereaved families and friends to start.
Helping a Family Who has Experienced a Neonatal Death
- Get in touch.
- Be prepared to listen without judging or forcing conversation.
- Be patient.
- Encourage the family to talk about their infant, experience and feelings.
- Offer to help with funeral arrangements.
- Express your sadness at the death of their infant.
- Refer to the deceased infant by name.
- Encourage the family to seek external help e.g from a counselor, healthcare professional or other parent.
- Avoid attributing blame or discussing the cause of the death.
- Offer to do household chores e.g shopping, cooking, house cleaning for the family.
- Offer to mind other siblings or take siblings to school and extra-curricular activities.
- Acknowledge the families emotions on special occasions e.g birthdays, Christmas, Mothers Day, Fathers Day etc.
- Do not visit the family without ringing ahead first.
- Do not bring children or infants to the house when visiting.
- Keep your emotions in check during the visits.
- Make regular contact with the family rather than waiting for them to contact you.
- Be cognisant that the death of an infant also affects the extended family e.g grandparents, aunts, uncles, cousins etc.