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 CLINICAL RESEARCH
A Model for the HELLP Syndrome:
The Maternal Experience
Maria C. Kidner and Mary Beth Flanders-Stepans
Objective: To describe the experience of mothers
whose pregnancies were complicated with HELLP syn-
drome (hemolysis, elevated liver enzymes, and low
platelets) and to determine if such experiences could
be clustered by common themes from which a model
could emerge.
Design: Retrospective, descriptive, qualitative
study utilizing grounded theory analysis.
Setting: Participants were interviewed in their
homes via telephone. Participants were from Kansas,
Maine, Maryland, Michigan, Minnesota, Mississippi,
South Carolina, Utah, and Wyoming, representing
both urban and rural settings.
Participants: Nine self-selected survivors of
HELLP syndrome.
Results: The essential structure of the experience
of HELLP syndrome can be expressed as a circle of no
control and not knowing, which included the five
themes of premonition, symptoms, betrayal, whirl-
wind, and loss. The pervading emotions expressed
were fear (of death), frustration, anger, and guilt.
HELLP syndrome represents a unique maternal experi-
ence that can be expressed in a model. JOGNN, 33,
44-53; 2004. DOI: 10.1177/0884217503261131
Keywords: HELLP syndrome—Maternal experi-
ence—Theory building
Accepted: February 2003
Pregnancy represents a time of family change,
with eager anticipation and dreams for the unborn
child and the growth of the family. Unfortunately,
between 0.1% and 0.4% of all pregnancies will be
complicated by HELLP (hemolysis, elevated liver
enzymes, and low platelets) syndrome (Curtin &
Weinstein, 1999; Gorman, 1999; O’Hara Padden,
44 JOGNN
1999). HELLP syndrome can complicate pregnancy
from as early as 17 weeks gestation to as late as the
first few days postpartum and can occur without all
the classic symptoms of pregnancy-induced hyper-
tension (hypertension, edema, and proteinuria; Por-
tis, Jacobs, Skerman, & Skerman, 1997). This dev-
astating maternal hypertensive complication results
in multisystem changes that can rapidly cascade into
organ failure and death. In the United States, an esti-
mated 4,000 to 16,000 women will experience
HELLP syndrome annually, resulting in 1,480 to
5,920 (37%) newborn deaths and approximately
156 maternal deaths (range 1% to 24% and mean of
3.9%) in 1 year (Curtin & Weinstein, 1999; Guyrer,
2000; Stone, 1998).
Presently, as many as 80% of HELLP syndrome
cases will be misdiagnosed, resulting in delayed med-
ical treatment (Musci, 1999; Stone, 1998). HELLP
syndrome represents difficult and complex patho-
physiological events that must be assessed synergis-
tically by the medical and nursing staff to provide
optimal care of the mother and child. Progression of
HELLP syndrome can occur so rapidly that within a
matter of hours a decision should be made for deliv-
ery regardless of the gestational age (Sibai, 1992).
This syndrome is a disease of endothelial dys-
function that occurs at implantation, creating acti-
vation of intravascular coagulation with incomplete
trophoblast invasion and incomplete maternal spiral
artery transformation. This leads to vascular
ischemia and fibrin deposits, resulting in cyclic
vasospasms and clotting cascade activation (Davies,
1992; Joern, Funk, & Rath, 1999; Portis et al.,
1997). The exact etiology remains unknown. Thus,
the possible sequelae of HELLP syndrome are varied
and require frequent, intense multisystem assess-
Volume 33, Number 1
TABLE 1
Sample Characteristics (Presented in order of interview contact)

Weeks Gestation
Psuedo-name Age @ del G/P* Onset S&S Delivery Recall Time Platelet Nadir (mm3)
Judy 33 35 G2P1 G3P2 25 30 31 34 4½ yr 15 mo 49,000 56,000
Jean 26 29 G1P1 G2P2 25 32 29 36 2½ yr ** 19,500 PIH****
Carol 26 G3P1 30 32 7 mo 20,000
Kathy 26 G1P1 32 33 2 yr 39,000
Barb 29 G2P1 13 24½ 4 yr 57,000
Tiff 28 30 G1P1 G3P2 20 n/a 24 40 6 yr 4 yr 15,000 n/a
Sandy 31 G1P1 31 32 3½ yr ***
Nancy 27 30 G2P1 G3P2 n/a 35 40 38 3 yrs 1 yr PIH**** 22,000
Sue 19 29 32 G1P1 G3P2 G5P3 n/a 34 26 n/a 34 28 13 yr 5 yr 2 yr n/a unknown + 38,000

*G/P = Gravida and para after delivery.

**Jean was pregnant during data collection and delivered at 36 weeks for maternal hypertension.
***Sandy experienced a liver rupture prior to delivery. Unknown platelet nadir, reports counts below 50,000 before rupture.
****Nancy’s first pregnancy was complicated by PIH and not HELLP. Jean was pregnant during data collection. Her pregnancy was complicated
by PIH and not HELLP.
+Unknown nadir, recalled count below 60,000.

ments in a hospital to monitor the crisis and prevent
impending disaster. HELLP syndrome is a maternal
hypertensive crisis that carries the risks of liver hematoma
or rupture, stroke, cardiac arrest, seizure, pulmonary
edema, disseminated intravascular coagulation, subendo-
cardial hemorrhage, adult respiratory distress syndrome,
renal damage, amaurosis, sepsis, hypoxic encephalopathy,
and maternal or fetal death (Cunningham, MacDonald,
Grant, Leveno, & Gilstrap, 1993; Davies, 1992; DeCher-
ney & Pernoll, 1994; Gorman, 1999; Isler et al., 1999;
McCormack, 1998; Sibai, 1992; Stone, 1998; Weinstein,
1985). The recurrence rate of HELLP syndrome ranges
from 3% to 27%, depending on the gestational age at
delivery and presence of underlying hypertension (HELLP
Syndrome Society, 2002; Sullivan et al., 1994). The earli-
er the onset, the higher is the recurrence risk.
An understanding of the maternal experience is imper-
ative to development of an appropriate plan of care. The
cataclysmal aspects of HELLP syndrome to the mother,
the unborn, and ultimately the family cannot be underes-
timated. The speed of cascading events, delay in diagno-
sis, and real threat to the lives of the mother and the
unborn baby mark HELLP syndrome as unique. An
extensive review of the literature located no published
research directed toward understanding the emotional
and physical effect of the HELLP syndrome crisis as per-
ceived by the mothers. There is abundant information on
high-risk maternal emotional and stress effects, although
the groups studied included a variety of maternal and
neonatal complications that placed those pregnancies at
high risk. Investigating the maternal experience of HELLP
syndrome revealed important psychosocial dynamics
common to this complication, which could assist health
care providers in caring for families experiencing this cri-
sis. The purpose of this study was to describe the experi-
ences of mothers whose pregnancies were complicated
with HELLP syndrome. A secondary goal was to create a
model that would facilitate the communication of this
experience to health care providers.
Method
This research used a constant comparative method to
analyze data collected through grounded theory, enabling
the researchers to discover, describe, and discuss the
essence of the investigated experience. A grounded theory
qualitative study design allows the investigator to develop
emergent theories based on direct empirical observations
and intuitions (LoBiondo-Wood & Haber, 1998; Massey,
1995).
Sample
A purposive sample of nine HELLP syndrome sur-
vivors, who were self-selected, were invited to share their
experiences in this retrospective, descriptive, qualitative
study. Eight participants were obtained from an open-

January/February 2004 JOGNN 45

letter invitation placed in the HELLP Syndrome Society,
Inc. newsletter, and one was referred by a local registered
nurse. Criteria for participation in the study included
being a survivor of HELLP syndrome, having had a
reported platelet count of less than 100,000 mm3 during
pregnancy, being able to speak English, and being 18
years of age or older. Eight participants were White and
one was Hispanic. The women represented both rural and
urban settings. Participants were from Kansas, Maine,
Maryland, Michigan, Minnesota, Mississippi, South Car-
olina, Utah, and Wyoming.
Sample Characteristics
The 9 mothers represented 15 deliveries, with 5 moth-
ers having subsequent pregnancies and 2 experiencing
HELLP syndrome during their second pregnancy (see
Table 1). One mother was pregnant during the data col-
lection. Of the 15 deliveries, there were 3 neonatal deaths.
Average gestational age at delivery was 34½ weeks, with
a range from 24 to 38 weeks. The reported platelet nadir
range was 15,000 mm3 to 57,000 mm3, with an average
of 35,055 mm3 (Normal pregnancy platelet range is
140,000 mm3 to 400,000 mm3). Platelet nadirs were not
available for two mothers. However, their recalled counts
were below 100,000 mm3. Verification of the diagnosis of
HELLP syndrome was made by the clinical presentation
and reported laboratory data. Recall time from delivery
to data collection ranged from 15 months to 13 years,
with 2 years being the mean.
Data Collection
Prior to recruitment, the proposal was approved by the
institutional review board. Participation was voluntary,
and each respondent was informed that she had the right
to refuse to participate and could withdraw at any time.
All participants provided their informed consent before
data were collected. None withdrew from the research.
A single in-person pilot interview was conducted to
develop the open-ended questions for the interview (see
Table 2). The question framework was based on the phe-
nomenological study of high-risk pregnancy by Stainton,
Harvey, and McNeil (1995). Each interview was conduct-
ed with respect for the sensitive nature of the topic and
the possibility of bringing up buried emotions from a
traumatic situation. Each mother was given ample time to
discuss her experience, until she felt that she could con-
clude the interview. Although social support service refer-
rals were offered at the conclusion of each interview, all
participants declined the offer.
Interview Questions
All interviews were audiotaped and transcribed verba-
tim, with pseudonyms inserted for identity protection.
Three audiotaped telephone interviews with each partici-
46 JOGNN
TABLE 2
Interview Questions
First Interview Questions
1. Please tell me about your experience of HELLP
syndrome.
2. What was it like to have HELLP syndrome?
3. What was the worse or most difficult aspect of HELLP
syndrome you faced?
4. What was the best or most thrilling aspect of HELLP
syndrome for you?
pant were conducted. In addition to the three interviews,
each mother completed a demographic form. Twenty-
seven audiotaped interviews, nine demographic question-
naires, and extensive field notes provided the rich data. A
constant comparative method of grounded theory
allowed for thematic development and member check ver-
ification, using reflection and clarification to verify the
emotions and experiences shared. Member checks con-
sisted of discussing developing themes with each partici-
pant. Each mother’s experience, ideas, and opinions were
evaluated and incorporated in the developing model.
Before the final member check, all transcriptions were
sent to the coauthor for independent thematic develop-
ment. After themes were identified, an agreement was
reached and a model was developed. The themes were
then used in the graphic model development. Each moth-
er received a copy of the graphic model prior to the final
member check. The model was subsequently presented to
44 surviving mothers attending the 2000 HELLP Syn-
drome Symposium for additional verification and valida-
tion. There was full support of the model by both partic-
ipants and the reviewing survivors.
Findings
The interviews were highly emotional as mothers
shared their stories of survival, feelings, and experiences
involving HELLP. Although experiences were different for
each mother, there were striking similarities among the
stories. The experience often began with a premonition
T
he maternal experience of HELLP syndrome
was permeated with a fear of death and
remained a strong determining factor in the
decision to avoid future pregnancies.
Volume 33, Number 1
that something was wrong. The quest for reasons for
symptoms led to a sense of being betrayed by trusted peo-
ple. Ultimately, mothers perceived that their bodies had
failed to meet their expectations of the desired pregnancy,
which led to feelings that their bodies had betrayed them.
F ear accentuates the profound feelings
of loss of the normal maternal experience
and future pregnancies.
The medical diagnosis set off a whirlwind of activity as
attempts were made to save the lives of the mother and
baby. The maternal experience of HELLP syndrome was
permeated with a fear of death that did not dissipate with
recovery but remained a determining factor in the deci-
sion to avoid future pregnancies. This fear accentuated
the profound feelings of loss of the normal maternal expe-
rience and future pregnancies. Five of the 9 mothers
decided not to attempt another pregnancy.
The emotions of fear of death, frustration, anger, and
guilt were reinforced by the whirlwind of medical activi-
ties that created situations over which the mother had no
control and during which she experienced not knowing.
Although these 9 women may not be representative of all
women with HELLP syndrome, by sharing their experi-
ences, they revealed the threads that became the tapestry
of the maternal experience of HELLP syndrome.
Model of the Maternal Experience of HELLP
Syndrome
The model of the maternal experience of HELLP syn-
drome is circular and represents an encasing experience
that continues to affect the mother’s life. The model has
two rings: the outer ring, for the pathophysiological
changes that occur with the altered blastocyst at implan-
tation, represents HELLP syndrome without overt symp-
toms. These changes will create HELLP syndrome. The
mother’s experience of perplexing pregnancy symptoms is
represented by entering the inner ring of the model.
The mothers’ experiences were traumatic and occurred
with great turmoil, thus the schematic design surrounding
the delivery is like a huge whirlwind. Emotions reported
were both poignant and powerful; therefore, they are
illustrated by the outstretched arms of the whirlwind. Sur-
vival is represented on the right of the outer ring. A dot-
ted line denotes recovery, because the HELLP syndrome
appears to continue to be part of the mothers’ emotional
and physical lives.
January/February 2004
FIGURE 1
Maternal experience of HELLP syndrome.
Analysis of these data resulted in 23 common aspects
that were then grouped into central themes. Subsequent-
ly, the model of maternal experience of HELLP syndrome
was developed (see Figure 1). The common themes
expressed were labeled as premonition, symptoms,
betrayal, whirlwind, and loss. The common emotions
were fear (of death), frustration, anger, and guilt. Binding
the entire experience were the overwhelming feelings of
no control and not knowing.
Premonition
From the beginning of the pregnancy, even before they
had physical symptoms, all mothers (primigravidae) in
this sample made statements about a premonition or
thoughts of “not feeling right.” Seven of the 9 mothers
stated that they had felt something was wrong early in the
pregnancy. Sue stated, “I just had the feeling that some-
thing wasn’t right inside. I knew something wasn’t right
inside.” Judy stated, “I just knew something was going
on, but I did not want to face it . . . feeling that something
was not right.” Jean even told her doctor, “I am not going
to make it to term.”
Symptoms
The maternal experience of HELLP syndrome took
shape with the first signs and symptoms the mother expe-
rienced. The symptoms were often described as back pain,
fatigue, not feeling well, shortness of breath, abdominal
JOGNN 47
pain, nausea and vomiting, and severe right upper quad-
rant pain. Pain was the most consistent symptom experi-
enced. Three of the mothers shared stories of pain so
intense that they had to crawl to the bathroom, both at
home and in the hospital. Tiff, who experienced HELLP
syndrome 6 years earlier, vividly described her onset of
symptoms:
My symptoms began January 29, 1994, with crippling
upper quadrant pain, and I was 4 months along by that
time and having no other symptoms, and no other
morning sickness or anything. And all of sudden, as
soon as that pain started I had two nights that was a
load of dry heaves, but the pain never ever, ever
stopped, not day, not night, not in any position.
She went on to have a terrifying delivery experience, los-
ing her baby (20 weeks gestation) and nearly losing her
life.
Betrayal
The mothers reported a sense of being led astray and
deceived, and having their concerns being viewed as
worthless. They agreed that the word betrayal represent-
ed their perspective. These mothers reported a strong
sense of betrayal by three distinct sources: other trusted
women, health care providers, and their own bodies.
Betrayal by Wiser Women. The mothers sought infor-
mation from women they trusted to have the knowledge
and correct answers. With the onset of physical symp-
toms, women questioned whether their symptoms repre-
sented a problem within the pregnancy or were a normal
part of pregnancy. All of these pregnant women asked
other women (described as wiser women) about the
symptoms and received universal reassurance that these
symptoms were normal. They were counseled not to
worry. Nancy shared her story:
I had everyone in the world, who was wiser than me,
telling me that this was heartburn, that this was reflux,
that this was stomach problems, that this was tension.
I actually let the pain go unchecked.
Responses from wiser women did not meet the moth-
ers’ expectations, leaving them with a sense of betrayal.
Despite pain, nausea, and vomiting, many mothers wor-
ried about continuing to discuss their symptoms with
wiser women for fear of being labeled a baby or whiner.
Betrayal by Health Care Providers. Still concerned
over the bewildering symptoms, the mothers then dis-
cussed their symptoms and fateful feelings with their
health care providers. The mothers were seeking affirma-
tion from people they trusted and were hoping for treat-
ment. Most physicians, however, told the mothers their
symptoms were normal or common pregnancy ailments
48 JOGNN
and encouraged them not to worry. Thus, the women’s
expectations of their health care providers were not met.
Nancy experienced extreme fatigue for 2 weeks but
could not convince her physician of the significance of her
symptoms. She described her 38-week visit:
So, on my 38-week visit, on a Wednesday, I was very,
very, very upset because I just felt very frustrated. As I
said, everything was normal [her physical examina-
tion]. My blood pressure was a little elevated, but I
don’t remember what it was, but I know it wasn’t a big
deal. And I discussed with the doctor and I just
explained that I was very, very, very upset and that I
hadn’t been feeling well. She said she would do some
lab work, but she was sure everything was fine and she
would call me the next day.
The following morning, Nancy was notified (on her
answering machine) to come to the hospital as soon as
possible and that “it was an emergency,” “her life was in
danger,” she had “HELLP syndrome,” and “delivery was
to be imminent.” She would spend 4 weeks in the hospi-
tal recovering from complications of HELLP syndrome.
Every participant made statements of bewilderment
and disbelief when told that their situation was serious or
life-threatening. All the mothers reported being told that
the symptoms they were concerned about (before the
diagnosis) were normal variants of pregnancy. Yet after
diagnosis, these same symptoms were seen as important
and dangerous symptoms of HELLP syndrome. This
delayed recognition and diagnosis of HELLP syndrome
created the strongest sense of betrayal.
Several of these mothers were admitted to antepartum
units for evaluation of nausea, vomiting, or pain. In the
hospital, the women often felt that the signs and symp-
toms of HELLP syndrome were still being devalued
before the diagnosis of HELLP syndrome was made. The
mothers felt that most of the medical staff expected the
symptoms to be representative of a normal pregnancy, the
flu, or gallbladder problems. Several mothers had diffi-
culty with the hospital staff before the diagnosis of
HELLP syndrome was made. Tiff, who was admitted to
the hospital for uncontrolled abdominal pain and vomit-
ing, shared her experience of that night and stated:
I spent most of time between throwing up and arguing
with the nurse. She was incredible! It was like some-
thing out of the movie or something. She was just
standing there and hollering at me, saying things like,
“You are not actually doing anything to help the pain
go away, are you? I think you’re bringing this on your-
self. I have already seen how much Demerol they have
given you and you shouldn’t be in any pain at all.
There is no reason for it.” I was just sickened and
stopped talking altogether.
Volume 33, Number 1
 Betrayal of Self. Several of the mothers felt their bod-
ies failed to meet their hopes and expectations of preg-
nancy and that their bodies had betrayed them. Judy stat-
ed, “It was just really emotional to think my body did
this. She [her baby] didn’t have a chance.” Kathy
described her sense of body betrayal:
I felt my body betrayed me. There was nothing in my
pregnancy I could have done differently. I did every-
thing by the book. I mean, as far as nutrition and
lifestyles, so that part was good because I could explain
it to myself . . . but you just feel . . . I just felt so
betrayed by my body.
Whirlwind
With the recognition and diagnosis of the HELLP syn-
drome, the physicians initiated an intensive whirlwind of
activity as attempts were made to save the mother or baby
or both. All the mothers stated that one of their primary
thoughts about HELLP syndrome was that it happened so
fast. One mother, Judy, who had HELLP syndrome twice,
described her experience:
With Walden, the first pregnancy, it was like a whirl-
wind. I remember, they just took me to the hospital
room and they were just checking my blood pressure,
and then saying that I had HELLP syndrome and that
my life was in danger, and it had to do with your liver
and your blood and all of this. And that I had to be
flown out now. I remember just like being slapped in
the face . . . not really computing what was going on.
Several of the mothers used the term whirlwind to
describe their experience. Tiff opened her interview by
saying “My experience with HELLP syndrome was
incredibly whirlwind.” After the transport and learning
that her baby was going to die, she stated:
After I had finally realized that I was willing to give up
my life for the baby, but that wasn’t even an option.
That’s when I started going bad. Anyway, we went on,
it was a whirlwind.
Loss
During the postpartum, the overriding theme of the
maternal experience was loss. The loss of the initial joy of
motherhood, the shattered dreams of having a full-term
birth, and, for most of the mothers, the loss of future chil-
dren were common aspects of the HELLP syndrome expe-
rience. For many, the HELLP syndrome delivery will be
their only birth experience.
Six of the mothers shared their feelings of loss and grief
caused by the HELLP syndrome delivery that was so dif-
ferent from the expected pregnancy outcome. Carol stat-
ed, “I don’t know what a contraction feels like, I never
had one.” Sandra stated, “And I just cried, I just thought:
January/February 2004
this isn’t the way pregnancy is supposed to be. I mean you
have visions of natural childbirth and your husband there
and so exciting.” Kathy said, “You can’t even experience
the joy of giving birth because you are so sick and that’s
another hard thing to deal with.”
“I
t is nothing you get over, but it is
something that has become part of my life.”
Often both the mothers and their newborns were in
intensive-care units, where the joys of the first moments
of parenthood could not be fully shared. Many mothers
described their postpartum experience as “horrid.” Cathy
shared her feelings toward the new role of motherhood.
She stated, “I was a new mother and was so sick and I
couldn’t enjoy going to visit my daughter in the nursery.”
Sandy said that her baby celebrated her 1st birthday
before she was able to care for her completely. It took
more than 16 months to recover after the complicated
HELLP syndrome delivery that resulted in a liver rupture.
Eight women in this sample decided not to have anoth-
er pregnancy because of their strong fear of death and the
intense memories of the HELLP syndrome they survived.
Their choice of not seeking a subsequent pregnancy is
embedded in feelings of not knowing the future and hav-
ing no control over the possibility of experiencing HELLP
syndrome again, in conjunction with the intense fear of
death. Barb shared her continued feelings of loss when she
stated,
I had to keep really, really, really busy. I had to keep my
mind from having a free moment or . . . your thoughts
go back to what you lost and it is difficult, and it is dif-
ficult for me 4 years later. When I see a pregnant
woman or little babies on TV or whatever, I still feel an
actual stab in my heart. So it is nothing you get over,
but it is something that has become part of my life.
Barb lost her baby at 24½ weeks gestation. She stated,
“There hasn’t been a day gone by that I haven’t thought
about her [the baby] and with those thoughts come the
heartache and emptiness.” She went on to say, “I will
never have ‘normal’ again, and that’s true, and now we
have a different normal.”
Not Knowing and No Control
The feelings of not knowing and no control were
reported as overwhelming because of the powerful
betrayal the women experienced during the signs and
symptoms phase and the speed of events from diagnosis
JOGNN 49
to delivery. The women were told that the situation was
life-threatening, even though their symptoms had not
changed. This conflict created a prevalent sense of not
knowing and having no control. This feeling was exem-
plified when Tiff was told she had HELLP syndrome:
I was sitting at the edge of the bed eating breakfast and
he came in and told me and my mother to pack my
bags immediately because we had to be transferred
right now. He said, “Well you are a very sick little girl,
right now we know that one of you is going to die.”
Tiff said that even after the transport to another hospital,
she was unsure of what caused the chain of events.
The feeling of no control had three sources: self, med-
ical decisions, and the event. First, having no control or
feeling helpless over one’s own body was reported by all
of the mothers. Several mothers stated that they had
worked hard to be a “good mother” by eating correctly,
engaging in healthy lifestyles, and exercising, but felt
helpless as their bodies became full of pain, fatigue, and
illness. Carol said, “The helplessness is just the fact that
there absolutely wasn’t anything I could have done differ-
ently to have changed the outcome . . . I mean there is
nothing you can do.”
All of the mothers reported feeling no control over
medical decisions. Those decisions were made about med-
ications, transport to other facilities, or immediate deliv-
ery, often without explanations from staff and health care
providers or allowing input from the family. One mother
stated, “I have a lot of depression because my life is out
of my hands.” Another mother said, “I had no control
over anything.” The mothers also reported that they had
no control over events of life. Jean stated:
I didn’t get really a choice to . . . I wasn’t given an opin-
ion or have my say because it was almost like life or
death. You either do this, or you die. So, it wasn’t like
really a choice.
Emotions
HELLP syndrome is an emotional as well as a physical
crisis. The participants reported consistent feelings of fear
(of death), frustration, anger, and guilt.
Fear (of Death). The intense obstetric emergency of
HELLP syndrome is permeated with fear of death. All
mothers shared intense fear that either they or their babies
would die. This fear escalated because of the rapid med-
ical interventions. Kathy stated, “I was scared out of my
mind. I mean, the call came in and said it was an emer-
gency, go immediately.” Jean shared her fears, “It hap-
pened so fast and I was so scared. I thought that I would
lose my life, or the baby would die.”
Barb described her near death experience as:
50 JOGNN
I can remember . . . looking for the light and it terrified
me that I wasn’t seeing it, because I thought I was
going to alternative places, but now I realize it was
because I wasn’t dead. But I was obviously that close
that I was looking for the light, I asked . . . I do remem-
ber asking . . . because I kind of remember looking for
the light and I remember asking my mom if I was
dying. And then I said something about dying to Tom,
too, because he said that he knew, until that point, he
was being completely out of the way of the nurses and
he said when I asked him that, he didn’t care if he was
in their way. He said he knew he had to start talking to
me and that’s when he started. I guess he started hold-
ing my hand or something and talking to me all night
and so yes, death was a huge factor. And that’s what
scares us to this day, knowing I came that close. We
just don’t truly want to risk that.
One third of the mothers described extraordinary
experiences concerning death. There were stories of
angels sitting on the bed for comfort and support, and a
mother shared her experience of visiting with her dead
father, who supported her through her delivery and recov-
ery.
Frustration. The women reported being frustrated by
the delay of diagnosis, by not knowing, and because of
the trusted people who failed to meet their expectations.
Frustration returned as a strong emotion postpartum,
when the mothers sought knowledge about HELLP syn-
drome and found it sparse or conflicting. All of the moth-
ers felt frustrated during their efforts to seek information.
Nancy stated, “I got frustrated with the physician. I was
just so frustrated I ended up crying at the doctor’s office
because I was full of frustration and not feeling very
well.”
Anger. Another strong emotion was anger, which was
directed toward the woman’s own body and the medical
provider. When Carol discussed her feelings of mother-
hood and the expected ritual of a term pregnancy and
delivery, she stated:
And so I had the feeling that we women are expected
to go through all of this [labor and delivery] and I’m
never going to experience it. So, yes, angry at my body
for not allowing the chance to experience a normal,
full-term pregnancy.
Judy, who had HELLP syndrome twice, stated, “Look at
what my body did. I can’t even carry to term.” The
HELLP syndrome survivors discussed angry feelings of
being robbed of a great pregnancy and missing the joyous
occasion of the desired birthing experience.
Carol stated, “I still have these really bitter feelings
towards my doctor and the whole experience. I was
Volume 33, Number 1
robbed of a great pregnancy, of this wonderful birthing dom, powerlessness, helplessness, and fear (McCain &
experience.” Judy also illustrated this anger and loss of Deatrick, 1994; Stainton et al., 1995). Mothers experi-
pregnancy when she stated: encing HELLP syndrome seem to experience some of
these emotions, but in a unique way. For example, the
I would have liked to have experienced some of the
commonly reported emotion of fear is different for the
pain and torture of being so big you could hardly
HELLP syndrome mother. Instead of having the most
move. But I was in my 8th month and started to enjoy
commonly reported fear of a malformed baby, delivery
it and then it got ripped away . . . one of the big things
complications of vacuum extractors, or cesarean section
is “why?” . . . and I think, I feel, a lot of anger that
(Szevernyi, Poka, Hetey, & Torok, 1998), these mothers
nobody can do anything about it.
experience an intense fear of death. In this sample, a spe-
All of the mothers described anger at the medical cific and unique theme to HELLP syndrome was the uni-
provider. Most of this anger developed due to a delay in versal feeling of having a premonition. It would be pru-
diagnosis or because the rapid medical interventions cre- dent for health care providers to assess for and document
ated a sense of not knowing and having no control. such feelings at each prenatal visit and during antepartum
hospital admissions. Emphasis can then be placed on dif-
Guilt. The fourth strong emotion evoked throughout
ferentiating common pregnancy symptoms (nausea, vom-
the HELLP syndrome experience was guilt. Women felt
iting, heartburn, and edema) from early symptoms of
guilty about the baby and the event. Guilt about the baby
HELLP syndrome. This may assist in a quicker and more
was especially evident with the mothers who delivered
timely recognition of pregnancy compromise and lead to
prematurely or whose babies died. Jean stated, “I felt so
a diagnosis of HELLP syndrome. Diagnostic value can
guilty I did this to him and don’t even know why.” Sever-
then be placed on a certain clinical history, which includes
al mothers whose babies were in the newborn intensive-
generalized edema, history of migraines, breathlessness at
care unit stated the guilty feelings occurred when they did
rest, severe tiredness, and epigastric pain (Stoger & Wal-
not recognize their baby. Judy shared her experience and
ters, 2002).
said, “It was horrible to have someone say, ‘Wow! My
In conjunction with presenting symptom assessments,
gosh, that is your baby!’ You have to go on someone else’s
nurses and providers should understand the pathophysi-
opinion.” Women also felt guilty because their partners
ology of HELLP syndrome and be able to complete a
had to endure the premature delivery, the traumatic deliv-
comprehensive physical examination to augment the
ery, and the long recovery. Carol stated, “I felt guilty
maternal-neonatal assessments. In a rapidly deteriorating
because he had to go through all of that too, he had to be
patient, examinations should be conducted every 15 to 30
strong for everybody.” Barb shared her feelings of guilt
minutes for cranial involvement, impending seizure activ-
toward her partner after she had discussed the death of
ity, hypoxic encephalopathy, pulmonary edema, adult res-
their baby:
piratory distress syndrome, disseminated intravascular
I felt like I had let him down; it was all my fault we coagulation, liver hematoma or rupture, renal compro-
can’t have kids. Well, I mean we could try again. We mise, subendocardial hemorrhage, shock, and fetal com-
are not sure at this point time. We don’t dare try. So promise. In conducting the assessment, value must be
anyway, it was like my fault, so I am so grateful he placed on the woman’s symptoms. If symptom relief is not
doesn’t blame me. obtained, then a search for clues that may expose an
impending obstetric crisis must be conducted. Acknowl-
Several other mothers who were in intensive-care units
edging the value of a woman’s previous symptoms may
and struggling for their own lives stated they also felt
help validate her concerns and increase feelings of con-
guilty because they were not immediately available to see
trol.
their babies. One mother stated, “All I wanted to do was
Providing women with information about HELLP syn-
rest and sleep. I felt guilty because I was thinking about
drome, the assessments required, the treatments, and the
myself instead of wanting to be in the newborn intensive-
common maternal experiences can decrease the feelings of
care unit with my baby.” Judy illustrated this persistent
having no control. Green and Coupland (1990) found
guilt when she stated, “It is just always going to be with
that allowing mothers to take an active part in decision
you and something you don’t feel normal and that you are
making and giving them information they could under-
not good enough, or you can’t.”
stand about what the health care staff were doing greatly
decreased the feeling of no control. In a situation in which
Implications for Health Care Providers the mother or baby is rapidly deteriorating, explaining the
rationale for medical treatment may be the only avenue to
HELLP syndrome is a unique maternal experience,
increase feelings of control.
physically and emotionally. Pregnant women labeled as
Continued support and education of the mother are
high-risk reported anxiety, depression, loneliness, bore-
vital in the postpartum. Discussing the maternal experi-

January/February 2004 JOGNN 51

ence is beneficial because it enhances the knowledge of
HELLP syndrome and lets mothers know they are not
alone in their experience. Verbal reconstructions and
sharing of the delivery story is important in creating affir-
mation of the experience. If sharing of the experience does
not occur, then negative thoughts of the experience can
persist (Affonoso, Mayberry, Lovett, & Paul, 1994;
Ramer, 1990). Referral to support groups such as the
HELLP Syndrome Society, Inc. or the Preeclampsia Foun-
dation can also help mothers understand their experience
and allow them to share it with others who will under-
stand and support them. Lack of birthing affirmation and
re-creation may be one of the reasons that it is difficult for
these survivors to move beyond their sense of loss.
It is important for physicians and nurses to understand
that mothers may have had intense near-death experi-
ences. In this sample, 30% of the mothers described
encounters with angels or other spiritual beings during
delivery and recovery. These mothers are emotionally and
spiritually vulnerable and require affirmation and contin-
ued support after discharge. Nurses must attempt to
understand the mother’s feelings of loss through her per-
spective so they can provide her with the support and
emotional care she needs. The importance of providing
empathetic care and education cannot be overempha-
sized.
This sample of mothers reported overwhelmingly that
the positive aspects of having experienced HELLP syn-
drome were the knowledge that there was a specific cause
for their symptoms and a desire to help others who may
have HELLP syndrome. The worst aspects of HELLP syn-
drome were reported as pain (especially unacknowl-
edged), fear (of the events and possible outcomes), loss (of
normal pregnancy), and death (the near-death experience,
death of the baby, and potential death if another preg-
nancy is attempted). Most of these mothers reported
anger and concern over the care they received both
antepartum and postpartum, which was due to the lack of
information provided to them about HELLP syndrome.
These aspects of the experience must be addressed to
decrease the risks of posttraumatic stress syndrome
(Creedy, Shocat, & Horsfall, 2001; Reynolds, 1997).
Both nurses and physicians should provide information
about HELLP syndrome to mothers and their families.
Implications for Further Research
The study of HELLP syndrome from the mother’s per-
spective is preliminary. Verification of this model and
research in understanding mothers’ perceptions of care
provided by both nurses and physicians are imperative for
developing improved methods of care. Use of qualitative
data will enable the development of research-based quan-
titative questionnaires to expand the sample size and
52 JOGNN
increase the data gathering on the maternal and even the
family experiences of HELLP syndrome. In addition, after
experiencing HELLP syndrome, many women have lin-
gering effects of fatigue or pain as well as emotional feel-
ings of loss. These effects can influence well-being and
overall health. Longitudinal research on HELLP syn-
drome is needed to understand the long-term physical and
emotional effects on the mother and the family unit.
Limitations
Study limitations include the inherent difficulties of
using open-ended questions to retrieve a lived experience
and subsequent generalization of the findings from the
population assessed to all mothers experiencing HELLP
syndrome. The participants in this research were recruit-
ed from an online support group. Participants of specific
ethnicity were neither sought nor considered in the model
development. Study participants were self-selected. This
method of selection attracted women who were ready to
share their experiences, which may have been much more
difficult than the norm.
Conclusion
HELLP syndrome may represent the deadliest hyper-
tensive crisis in pregnancy, when the mortality and mor-
bidity of the mothers and babies are combined. It is
imperative to understand the maternal experience, to aug-
ment the understanding of the pathology, to improve
rapid diagnosis, and to provide empathetic care. This
research reveals the uniqueness of HELLP syndrome as a
high-risk obstetric event that can be expressed as a circle
of no control and not knowing, which include the themes
of (a) premonition, (b) symptoms, (c) betrayal, (d) whirl-
wind delivery, and (e) loss. The prevalent emotions
expressed were fear (of death), frustration, anger, and
guilt. Each mother’s story was unique, yet their experi-
ences of HELLP syndrome had distinct patterns and com-
mon themes. A graphic model was developed and repre-
sents a beginning understanding of the maternal
experience of HELLP syndrome. Utilization of this model
by health care providers may assist in earlier recognition
of the disease and management of the psychosocial and
emotional aspects of the syndrome after it has been diag-
nosed.
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Maria C. Kidner, RNC, MSN, FNP, is a primary care provider
and emergency room trauma coordinator, South Big Horn
County Critical Care Access, Basin, WY.
Mary Beth Flanders-Stepans, RN, PhD, is an associate profes-
sor, University of Wyoming, School of Nursing, Laramie.
Address for correspondence: Maria C. Kidner, RNC, MSN,
FNP, South Big Horn County Critical Care Access, 388 South
Highway 20, Basin, WY 82410. E-mail: kidner@tctwest.net.
JOGNN 53