A+Parent's+Loss

An Overlooked Loss



Janet* and Bob* did not have the easiest pregnancy but were excited nonetheless to welcome their new bundle of joy into the world. This was not their first child but their experience may have made this their last child. Within a day after their daughter was born, it was discovered she had a heart disorder and their world crashed. There was no welcoming family and friends to meet the new member, no holding her close and marveling; there was immediate panic and fear. Would she make it? What was happening? How do we tell everyone? What do we need to do? Janet and Bob were experiencing a sharp and unexpected loss-the loss of their assumptive universe.



Population: Parents who experience the loss of their assumptive universe due to their newborn child being born premature, with a disability or problem. These infants have to immediately be taken to the Neonatal Intensive Care Unit (NICU) or have surgery. These parents experience a loss that is often unrecognized and overlooked and they grieve this loss. Their assumptive universe, or the way they assumed things would go, no longer exists. Instead, these parents are left wondering about their child surviving, if they can touch their newborn, etc. It is often assumed that when a newborn child is welcomed into this world, there would be a sequence of events: hold baby, take pictures, show off the baby to others, possibly breast feed, go home to a completed nursery, rest, bond....the list is endless. The parents of these children do not get to enjoy these small pleasures. These parents experience the following types of loss: **Symbolic loss: losses that do not result from death; not everyone will experience this type of loss (Walsh-Burke, Katherine, 2012) ** This type of loss can lead to complicated and delayed grief. The following clip offers insight to this population: media type="youtube" key="6eRsksjBSP0?rel=0" height="315" width="560" align="center"
 * Disenfranchised Loss: losses that is generally not recognized by society (Walsh-Burke, Katherine, 2012) **

//This population is of personal interest to me, as I am a member of this group. My son was born premature and I lost my assumptive universe. At the time, I did not recognize what I was going through as a loss. There was not much, if any, help available to tell me how to handle this situation. Thus much of the information provided is based on personal experience and observations.// While there is a lot of information and attention given to the children and their disorder or problem, there is not a lot of focus on the parents and what they are experiencing. This population suffer a real loss; one that society disregards. Bringing attention to this population helps provide insight into what the parents are going through, helps to recognize that these parents experience a loss and provides knowledge of how to help these parents grieve and cope. There are also a significant amount of individuals who either personally experience this loss or know someone who has experienced it: "About 120,000 babies (1 in 33) in the United States are born each year with birth defects (1). A birth defect is an abnormality of structure, function or metabolism (body chemistry) present at birth that results in physical or mental disabilities or death. Thousands of different birth defects have been identified (2). Birth defects are the leading cause of death in the first year of life (3)." ( 2011)

"Most pregnancies last around 40 weeks. Babies born between 37 and 42 completed weeks of pregnancy are called full term. Babies born before 37 completed weeks of pregnancy are called premature. In the United States, about 12.8 percent of babies (more than half a million a year) are born prematurely (1). The rate of premature birth has increased by 36 percent since the early 1980s." ( 2011)
 * ** Primary Loss ** || ** Secondary Loss ** ||
 * Assumptive Universe || Holding/touching baby ||
 * Healthy/Normal Baby || Understanding ||
 * || “Showing the baby off” ||
 * || Bonding time ||
 * || Friends ||

Primary losses: Loss of the assumptive universe that a parent has when their newborn child is born and something prevents the child and parent from being together in a traditionally assumptive manner. For example: a premature baby is taken immediately to the NICU, a sick baby is taken to the NICU, etc. The parent has lost the role of what they assumed to be normal and expected: holding the baby, riding out of the hospital in a wheelchair with the baby, etc. The loss can be short term-or long term depending on how serious the condition of the child is. However-while the parent may regain their sense of being a parent-they have forever lost their assumptive universe of being that 'new' parent. They can't go back and capture that sense/feeling-and the person often looks back with a sense of loss.

Secondary losses: Loss of the attention gotten from having a baby, loss of belonging to the ‘new parent’ club, loss of time (spent with baby-bonding time), loss of friends, loss of understanding (from others), loss of touching child (sometimes not allowed), etc.

Applicable Concepts *Most parents do not expect or plan for their child to be different. They typically have a vision of a perfect child and all that ensues with having a child. When their assumptive universe changes, they have to cope with this loss. They grieve this loss. *"Parental bereavement has been described by Wheeler (2001, 52) as a search for meaning that has been shattered by crisis, along with the development of a new set of assumptions about themselves and the world." (Kreuger, Guenther, 2005) *It is interesting to note that the 5 stages of grief might be applied to this population as well (Kreuger, Guenther, 2005) . These parents go through denial, anger, bargaining, depression and acceptance just as if a death had occurred. *It has been researched that the reactions of parents to having a premature child is PTSD related. It has also shown that premature children have a higher risk of having other related health problems in the future. (B Pierrehumbert, A Nicole, C Muller-Nix, et al., 2003) *It has been found that parents are often left out of the loop when it comes to their child being placed in the NICU-about what is going on, information, etc. It is also true that there are not many supports in place to assist parents with this loss. (Hamilton, Redshaw, 2009) *When children are released from the NICU/hospital, parents still feel stressed and worry about their child. (Barreto, 2008) *Families of parents who suffer this loss often feel awkward when visiting the children and recieve little communication about what is going on. They feel information is not kept confidential within the NICU and this adds stress to the parents. (Bramwell, Weindling, 2005) *Children who stay in the NICU are associated with having poorer mental and physical health than children who do not. As well, parents of these children are associated as having less financial means. (Redshaw, 2004)

Children who are considered normal, or born without any disorders or concerns, do not suffer the same stigma associated with these children. Parents emotional reactions are considered less stressed and concerned. Their feelings of loss are slim, and not applicable in the same situation. Parents who experience the loss of their normal and healty child are at risk for health concerns. The more significant the disorder or problem the child has, the higher the risk and stress levels of the parents. The more the parents need support and understanding of their loss.

The following website has interesitng information related to this topic: [] Quotes from parents who have experienced this loss, as copied from the above website: > > > Stressors and Processes:
 * "One thing that I did, because I am very sensitive to smells, was buy some red bandanas and wash them and sleep with them next to my skin for a night or two. I would take them to the NICU and cover [my son's] eyes with it. I also left a note asking that the bandana be removed every time anyone else had anything to do with him. Whenever the bandana was replaced, [he] would calm down no matter what had happened.
 * "I know a source that gave me great relief and helped me "keep it together" was seeing photos of the babies who had graduated the NICU ... I would scan the board for all babies close to 29 weeks and gain such relief looking at the "before" and "after" pictures."
 * "I found my babies did better when I read to them. It helped me feel like I was doing something motherly during those times when I couldn't hold them. After I was able to hold them, I still read to them while I held them. [My son] used to love to place his ear on my chest and listen to my voice rumble. All three liked books with an obvious rhythm, like Shel Silverstein and Graeme Base."

There are numerous issues that add to the parents worry and concern over their loss. These stressors can be life and/or grief oriented.

-Sadness -Cry. Research the issue. Withdraw. -Anger- Yell. Exercise. Over protect. -Fear- Talk about it. Find others in similar situations. Shut down. Ignore situation. Don’t visit. -Worry/Anxierty-Pray. Talk about it. Exercise. -Embarrassment-Avoid the child. Abandon the child. Become defensive
 * Grief related stressors and Processes:**

The parent often is sad about the situation; the loss of their assumptive universe, etc. Tears are a normal way to deal with this. Some parents may research the issue their child has to better deal with it and some parents withdraw from the issue at hand. For anger-yelling is one way that parents process the situation, which directly ties in to being overprotective of their child. This may result in the parent feeling/saying that no one is doing anything right-or as the parent would do it. Exercise is another way that the parents can deal with the stress of the loss/situation. Typically the parent is scared for their child-the possibility of another primary or secondary loss: death, etc. Some parents talk about the situation and how they feel, find other people in similar situations. Some parents shut down and ignore the fact that they lost their assumptive universe, their idea of a healthy and happy child and do not visit or see their child. Everyone worries about their child, but these parents worry about their children in a life and death manner. Their situation is more critical. Parents are also anxious about returning to visit the NICU and what they may find had happened. Parents may find comfort praying, talking to others about their concerns and some parents find that exercising helps relieve some of the stress. Some parents may feel embarrassed about their child not being perfect. They might not know how to deal with this situation so they avoid the child or refuse to have anything to do with them. They might also become defensive about their child, which can lead to the parent being angry.

-Financial -Talk to bill collectors/banks. Shop. -Time Management- Make a list of things to do. Ask for help. -Employment- Discuss situation with employer. Utilize Family/medical leave laws.
 * Life related stressors and Processes:**

The life stressors can be employment because the child stays in the hospital for a length of time and the parent has to chose between working or being with their child. It can be a financial stressor because of the lack of working, how do they pay for the cost of the child to be in the hospital (bills tend to range upwards of $40 thous.), do they pay for a hotel room, do they drive back and forth, etc. Some individuals may turn to shoping and make the financial situation worse. Time management is a potential stressor as the parent has to decide how much time to devote to their child in the hospital-and how much time to devote to other children, family members, self, friends, etc. These babies could just have a cold, or they could have life threatening conditions.

It depends on the person and how they process their stressor as to whether it is adaptive or maladaptive. However, if a parent is embarassed and does not seek support or information so that they can overcome this embarrassment, the process may become maladaptive. This can lead to the child suffering if the parent leaves the child or refuses to see them again, etc. It can also lead to the parent internalizing the problem and having more problems develop. If someone does not deal with their financial situation-they could end up losing everything. It is interesting to note the correlation between the stressors and processes. For example, if someone is sad and they drink to cope with the loss, but are able to function, this is more adaptive than maladaptive. However, if the person drinks and is not functional, things start to unravel. They may become depressed, not visit the child, run their financial debt up. lose their job-things could get worse from there. This is definately maladaptive.
 * Adaptive/Maladaptive:**

-Death of the child: funeral arrangments, childs belongings -Health problems in the future: will my child be normal, will they have Autism, will they have lung problems, will they need surgeries, will they be small, will they grow normal, what will impact their growth..... -Future children: will they have the same problems, can we deal with the stress
 * Anticipatory Stressors:**
 * Theories and/or Solutions[[image:http://ts3.mm.bing.net/images/thumbnail.aspx?q=4571258759021318&id=38f5cdff3d328092aba7fb056b3481bf&url=http%3a%2f%2fs3.apkhub.com%2f0a6c950e56854045a92ebc6645a56e03.jpg width="84" height="70"]] **


 * -The most encouraged solution, or way to address this loss, is for parents to seek out other parents who have experienced a similiar loss and/or support groups. **
 * However, a lot of hospitals do not offer these services (or promote them) and a lot of parents do not have the time or resources to devote to finding them. Thus this service is not often sought out or utlized. Then these parents do not address their loss. **
 * -Chat rooms, blogs, video diaries are also ways to deal with this loss. Chronologically recording the child's development and progress is one way for everyone to stay involved and focus on moving forward. **
 * -Grief counseling is another option for these parents. It might be for more intense situations. **

Poignant video relating to population: media type="youtube" key="eU3LdeD4tqI?rel=0" height="315" width="420" align="center"

** FAQ's ** 1. What impact does this loss have on the relationship that parents have with their other children?
 * This loss impacts the entire family. It can cause extra stress if a parent has to split their time between the hospital and home. It can sometime make the parent overprotective. The impact also depends on how the parents are processing their grief.

2. How does this loss impact the parents relationship?
 * It again depends on how the parent's process their grief. This type of loss has pushed parents away from each other but adversely has brought parents together.

3. How do parents react to their child? Do they treat them differently?
 * Parents have varied in their reactions from hovering and being overprotective to not wanting anything to do with the child.

4. Do the parents want to have more children?
 * This depends on the parents but it has generally been found that most parents are hesitant to have more children for fear that they will suffer this same, or a worse, loss again.

5. Does it make a difference in the parents ability to cope if the parents know ahead of time that the child will have a health problem?
 * It gives the parents time to prepare themselves by gathering information. The loss is not such a surprise and not quite as hard to swallow.

6. How do parents cope?
 * Parents chose different methods to cope. See above processes.

7. Do parents seek out other parents going through the same situation?
 * Some parents do; some do not. However, there is always an unspoken understanding between parents who have suffered this type of loss. Typically parents do not know how to find other parents. Parents of other children in the NICU are not often present.

8. What is the divorce/separation rate among these parents? Related information can be found: Loss Related to Having a Child with a Developmental Disability
 * A precise rate cannot be provided as the statistics break down the divorce/separation based on the disorder/problem the child has. However, the divorce/separation rate is typically higher than normal. (disaboom.com)

//A review of the literature available revealed that while there is a lot of information on the actual disorder or problem that the child has, there is little focus on the loss that the parents face. There is limited informatin regarding the emotional disturbance the parents feel and all information stated that more research should be done on this topic. There should be more support and solutions for parents to turn to. It is felt that there should be a more direct focus on the actual loss and coping mechanisms. Educating the public can only be beneficial for these children and parents.//


 * Names changed for privacy

**References:**

-Walsh-Burke, Katherine. (2012). //Grief and loss: theories and skills for the helping professional//. (2nd ed., pp. 49-72).

-(2011). Retrieved from []

-Kreuger, Guenther. (2005). //Meaning-making in the aftermath of Sudden Infant Death Syndrome//.

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">B Pierrehumbert, A Nicole, C Muller-Nix, M Forcada-Guex, F Ansermetet. (2003). //Parental post-traumatic reactions after premature birth//.(88)

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-Hamilton, K, Redshaw, M. (2009). Family Centered Care? Facilities, information and support for parents in UK neonatal units. (95)

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">- P Sáenz, M Cerdá, J L Díaz, P Yi, M Gorba, N Boronat, P Barreto, M Vento. (2007).Psychological stress of parents of preterm infants enrolled in an early discharge programme from the neonatal intensive care unit: a prospective randomised trial.(94).

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-R Bramwell, M Weindling. (2004). Families’ views on ward rounds in neonatal units for the FVWR Research Team. (90). <span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-Redshaw, Maggie. (2005). Infants in a neonatal intensive care unit:parental response. (90)

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-Retrieved from: []

<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12px;">-Retrieved from: []

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