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Being the parent of a NICU/Special care baby

Approximately 40,000 babies are admitted to Special Care Nurseries each year in Australia, for a variety of reasons. Approximately 21,000 of these babies are born prematurely, others have congenital abnormalities, breathing difficulties or injuries resulting from birth, some have infections, and there are many other reasons why babies may be admitted. Around 6,000 babies require critical and intensive life support each year. (Laws, Grayson & Sullivan 2006).

You and your baby may not have gotten your full 9 months, the birth plan went out the window, the celebrations of birth missing and you must now experience the rollercoaster ride of ups and downs, setbacks and triumphs, which very well could be one of the greatest life challenges you ever face.

Powell (2001) states that ” Most people experience the loss of someone or something of great importance several times during their lives (Bonanno, 2001). When grief is related to loss of an experience, not a death, how does one grieve or cope? Boss (1999) coined the term “ambiguous loss” when studying the wives of pilots missing in action in Vietnam and Cambodia. They had no information and no official verification that anything had been lost, thus were filled with conflicting thoughts and feelings. This ambiguity aptly describes the feeling of loss after a premature birth. The parents have a live baby, thus there is no proof that anything was lost.

Furthermore, society expects joy at the birth of a child, so the loss that parents of a newborn premature baby feel is confusing. The final trimester of a pregnancy is a time for the mother to prepare physically and psychologically for the birth. Since prematurity interrupts the natural order of a pregnancy with little to no warning, parents are often in shock and confused about their role.

Reading parents’ narratives of the birth of their preemies, it became increasingly clear that they were attempting to manage an “ambiguous loss”. The respondents were undergoing various emotions of grief because they were mourning the loss of a full-term pregnancy. The participants were shocked, saddened, and angered that their child was suffering from a serious medical condition and may die. However, they were unable to experience the emotions of grief to their full extent because their baby was alive. The participants did not know how to communicate and accept their grief because they were to be celebrating their child’s birth. This “ambiguous loss” resulted in an overarching “joy-grief” contradiction. ”

Parents of NICU/SCN babies often feel a sense of loss, guilt, regret and distress about how their baby came into the world. Many deliveries resulting in NICU/SCN admission are traumatic ones, and not how we planned or imagined having our baby to be. Some of the common feelings are:

  • Loss at not being ready to not be pregnant any more
  • Loss and regret that you and your baby didn’t get your full 9 months
  • Guilt that you didn’t carry your baby to term
  • Guilt that your baby has a congenital abnormality or problems resulting from labour and delivery
  • Loss and regret at not having the birth you had planned or wanted
  • Trauma and distress at what you went through during labour and delivery
  • Loss of the celebrations related to birth
  • The loss associated with not having photos or footage of your baby’s birth or straight after birth
  • The loss of not getting that first hold straight after birth

These are all normal feelings. It can help to talk or write about your experience, talk to parents who have been through similar experiences, talk to a qualified counselor/social worker or psychologist, bond with your baby, celebrate milestones in the NICU/SCN, take lots of photos, and focus on the positives.

Having your baby stay in the NICU or SCN can be a very stressful, emotional and traumatic time for baby and parents. You are meant to be celebrating the birth of your baby but must experience a rollercoaster ride of emotions and the new experiences of having a premature or sick newborn. You are probably experiencing a range of emotions and feelings like:

  • sadness anger
  • loss blame
  • fear disapointment
  • guilt isolation or loneliness
  • powerlessness anxiety
  • numbness grief
  • overwhelmed

Understand that these feelings are normal. Hopefully the knowledge that what you are feeling is common to most NICU/SCN parents gives you some comfort or relief and helps you to know that you are not alone.

One of the most difficult things about these emotions is that you may also be experiencing feelings of happiness, love and joy. These contradicting feelings and emotions can be very confusing and exhausting. You are happy to see your baby, but not happy that they are here like this. You feel joy when they make progress but are still saddened by what they are going through and the struggles they still face. Take and experience each emotion as it comes. Don’t feel guilty or silly about how you are feeling. Your feelings are valid and you do not have to explain or justify them to anyone.

It is important during this difficult time that you and your partner (if you have one) support each other.
First accept that you may have different feelings and emotions even though you are experiencing the same situation. If your partner wants to talk and share their feelings, listen without judgment or trying to fix the situation. Share your thoughts, fears and feelings with each other. Avoid conflict – you are both going through a difficult time. Lean on each other, compromise, talk about problems. Most of all remember that you both share the bond of being parents of your little one and feel the same love for your child. You both want what is best for him/her.

Parents who take care of their own needs during a difficult time are better able to support their baby. Most parents are able to cope with having a NICU baby. However there are times when a parent should seek additional professional help. These occasions include any parent feeling or showing any of the following:

  • Prolonged agitation or anxiety
  • Depression or extreme hopelessness
  • Impaired daily activities or job function
  • Suicidal thoughts
  • Prolonged, inhibited or absent grieving
  • Extreme physiologic/psychological reactions
  • Substantial guilt
  • Substance Abuse – alcohol or drug use
  • Psychotic states
  • Uncontrolled rage

Parents of NICU/SCN are thought to be at a greater risk of Post Natal Depression and Post Natal Post Traumatic Stress Disorder . The term Post Traumatic Stress Disorder (PTSD) refers to a disorder that can occur following the experience or witnessing of life-threatening events. It is difficult for some people to understand that childbirth can be such an event. The Birth Trauma Association in the United Kingdom has identified some of the causes of Post Natal PTSD as mode of delivery, mothers fear of her own safety or that of her child, lack of control, attitudes of staff, inadequate pain relief, lack of support and previous traumatic event.

As mentioned previously preterm labour and delivery is often traumatic. Mothers may not have control over the mode of delivery, with some women requiring emergency c-sections or instrumental deliveries that were not what they wanted but were necessary for ensuring the best chance for themselves and their baby. When you know you are delivering your baby early, there is always the fear that they will be sick or die. Some mothers of premature infants felt a lack of control whilst in labour and during delivery. Their birthing experience wasn’t a “normal” full-term one and therefore they had to rely on the medical staff to do what needed to be done and decisions may have needed to be made without much discussion or explanation. Support is important in helping parents of NICU and SCN babies cope with their feelings of trauma, stress, sadness, etc.

Effective Strategies for Coping

During the first few hours, days & weeks following the admission of your baby it is helpful to:

Take it one hour at a time, one day at a time. If needed, just take things moment by moment.

  • Try to maintain some type of a normal routine or develop a new normal one.
  • Get enough sleep or at least enough rest.
  • Participate in regular exercise to relieve stress and tension. Even walking helps.
  • Eat a balanced diet. Limit junk food. Drink plenty of water.
  • Avoid using alcohol, medications or other drugs in excess or to mask the pain.
  • Take time to do things and be with those people who comfort and recharge you.
  • Talk to Nurses, Social Workers & other NICU Parents for advice. Those who care for babies and who lived through and survived similar events can offer valuable insights.
  • Find creative ways to express intense feelings. Paint, photograph, scrapbook, draw, create something. There are even special journals for NICU babies.
  • Remember coping skills you have used to survive past life challenges. Draw upon those inner strengths again for this current challenge.
  • Celebrate the firsts. First touch, hold, nappy change, feed, coming off ventilator or CPAP, getting tubes taken out.

The material provided here is for informational purposes only and should not replace, or be used as a substitute for, professional medical advice

Source: National Premmie Foundation

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