In the June 1995 edition of 'Emerge', the Society distributed a questionnaire on behalf of Bronwyn Carter and Robyn McGarvie - two Registered Nurses in their 30s who have both had CFS for several years. Twenty-seven mothers replied to the survey, and the first part of the results is published below. In response to a letter published in their local CFS newsletters asking for information, mothers with CFS living interstate and overseas have written accounts of their personal stories and offered advice for others. These responses are not included here, but Bronwyn and Robyn plan to collate the information into a resource pamphlet or book. Enquiries to other CFS organisations around the world showed that very little work has been done in this specialised area. The survey aimed to begin the process of documenting women's experiences and needs in dealing with the unique problem of bearing and raising children while living with CFS. Some survey respondents agreed to join a contact list of 'Mothers with CFS', in order to provide an informal support network for this special interest group. For further information about joining the support network, please send a stamped self-addressed envelope to 'Mothers With CFS', PO Box 5, Carnegie, 3163.

Number of responses to survey = 27

Mothers have had symptoms of CFS for:		Respondents from the Society's general membership 1994*
0 - 5 years	22%	43%
5 - 10 years	44%	28%
10 - 15 years	15%	29% (> 10 years)
> 15 years	19%
Average	11.2 years	9.1 years
Shortest	1 year	5 years
Longest	53 years	55 years
Marital status:
Married	92.6%
Separated	3.7%
Divorced	3.7%

* Figures published in Emerge, December 1994.

Decision to become pregnant while living with CFS:

CFS developed after child-bearing completed (14.8%)
CFS had no influence in deciding to become pregnant (48.1%)
CFS influenced the decision to become pregnant (37%) as follows:

• waited, found their health improved somewhat; then became pregnant (14.8%)
• waited in vain, hoping for their health to improve, and eventually went ahead despite ill-health (one waited 7 years) (11.1%)
• became pregnant accidentally (7.4%)
• waited several years, but decided to become pregnant as she was over 36 and running out of time (3.7%)

Current age of children:

Total number of children in survey = 54 (born to 27 mothers)
Average number of children per mother = 2

Total born before mothers developed CFS = 22

Average age now:	First:	6 years, 1 month
	Second:	4 years
	Third:	1 year, 8 months

Total born after mothers developed CFS = 32

Average age now:	First:	6 years, 3 month
	Second:	3 years, 3 months
	Third:	2 years, 8 months

For children born since developing CFS - these scores on the disability scale indicate the extent of symptoms at the time the mothers became pregnant:

	Average	Range
1st pregnancy	5	2 - 9
2nd pregnancy	5	1 - 9
3rd pregnancy	5	3 - 9

Symptoms During Pregnancy
	significanty worse	slightly worse	same	slightly better	significantly better
1st Child (20 mothers)
during the pregnancy	10%	10%	15%	25%	40%
child 6 months old	20%	20%	20%	20%	10%
child 12 months old	12%	29%	18%	29%	12%
2nd Child (8 mothers)
during the pregnancy	25%	12%	25%	13%	25%
child 6 months old	33%	17%	33%	0%	17%
child 12 months old	17%	33%	16%	17%	17%
3rd Child (3 mothers)
during the pregnancy	0%	67%	33%	0%	0%
child 6 months old	0%	0%	100%	0%	0%
child 12 months old	0%	0%	100%	0%	0%

Current level of health: disability scale for mothers with CFS caring for young children. (Adapted from CFS Disability Scale, The Doctor's Guide to Chronic Fatigue Syndrome, by David S. Bell, Addison-Wesley, Massachusetts, 1994).
0%	10: No symptoms at rest. No symptoms with exercise. Normal overall activity level. Able to care for children full time or do paid work full/part time and care for children part time.
0%	9: No symptoms at rest. Mild symptoms with activity. Normal activity level. Able to care for children full time or do paid work full/part time and care for children part time.
7%	8: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction noted for activities requiring exertion only. Able to care for children full time or do paid work full/part time and care for children part time with difficulty in tasks requiring exertion.
0%	7: Mild to moderate symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to care for children part time with difficulty.
29%	6: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to perform tasks requiring physical labour, but able to care for children full/part time and do paid work part time including light activity if flexible hours.
15%	5: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 70% of expected. Unable to perform strenuous tasks or do paid work. Able to perform light tasks and care for children full time.
33%	4: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50% to 70% of expected. Not confined to house. Unable to perform strenuous tasks. Able to perform light tasks, care for children and concentrate for 3-4 hours per day, but require rest periods.
4%	3: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform light tasks 2-3 hours per day, and care for children part time only. Require 2-3 hours of complete rest during the day while child sleeping or in care.
4%	2: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30% to 50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than one hour per day. Able to supervise children bathing or playing for short periods, but require alternative child carer for 4-8 hours during the day.
0%	1: Severe symptoms at rest. Bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration. Require alternative child carer for most of the time.
4%	0: Severe symptoms on a continuous basis. Bedridden constantly. Unable to care for self or children. Require full time alternative child carer.

Childbirth since developing CFS:

Out of 21 mothers, CFS symptoms had no effect on the experience of labour in 11 of them. The remaining 10 mothers believed CFS symptoms affected labour in the following ways:

• epidural anaesthesia and forceps were used because of mental and physical exhaustion, and loss of muscle strength (5)
• bedridden for almost the entire pregnancy - this mother believed this led to the baby lying in a transverse position, and requiring a caesarean delivery (1)
• birth was longer and more painful compared with previous births - body shook violently before and after the birth (1)
• an injection of the narcotic analgesic, Pethidine, caused total loss of control over brain and muscles (1)
• believed muscle weakness during labour exacerbated haemorrhoids (1)
• had to plan for labour with one month's bed-rest prior to due date (1)
• coped better than expected, but believed it took 6 months to recover from the labour (1)

Time spent in hospital after the birth
	Range (days)	Average (days)
1st child: (children born on average in 1989)	3.5 - 14	8
2nd child: (children born on average in 1993)	5 - 10	7
3rd child: (children born on average in 1994)	4 - 10	6

Compare these with the figures below for the 'Average length of stay for mothers after giving birth - normal delivery, no complications', from a report by The Victorian Medical Women's Society tabled in the Victorian State Parliament in April 1995, quoted in The Sunday Age, 23 April, 1995:

91/92	4.85 days
92/93	4.5 days
93/94	4.1 days

The current average length of stay for uncomplicated vaginal deliveries, from 'Where Do Babies Come From?', a table comparing the facilities of 11 Melbourne hospitals in The Sunday Age, 14 May, 1995 is:

1995

4.85 days

Extended hospital stay due to CFS symptoms:

Out of 22 mothers, 10 needed extra time in hospital because of CFS symptoms.

1st child:	Extra 2 days: 4	Extra 5 days: 2	Extra 7 days: 2
2nd child:	Extra 3 days: 2
3rd child:	Nil

Feeding methods - (22 babies)
	fully breast fed	partly breast fed	bottle fed	partner bottle fed	other helper bottle fed	% bottle fed
in hospital	19 (86%)	0 (0%)	3	1	1	(4%)
at two weeks	19 (86%)	0 (0%)	3	2	1	(4%)
at three months	17 (77%)	2 (9%)	3	3	1	(4%)
at six months	12 (54%)	1 (4%)	9	6	1	(42%)

Compare these figures with the figures below from the table 'Breast Feeding Statistics - Victoria', compiled by Nursing Services Unit, Department of Health and Community Services, from the Maternal & Child Health Centre Annual Report 1994, (figures for year 92/93):

	fully breast fed	partly breast fed	bottle fed	unknown
in hospital	75.6%	1.6%	21.6%	1.2%
at two weeks	73.9%	2.6%	24.1%	1.4%
at three months	52.7%	5.0%	39.7%	2.6%
at six months	39.0%	4.5%	52.3%	4.2%

Weaning

Out of 16 mothers, 6 found breast feeding easy, and weaned their babies at a time of their own choosing, citing such advantages as not having to wash bottles or prepare feeds, and allowing (or forcing) them to sit or lie down and rest while they fed. One mother believed breast feeding gave her more energy by stimulating the adrenal gland. Another persisted with breastfeeding even though she felt it was dragging her down, because she thought the advantages of breast milk for her baby's immune system outweighed her own suffering. One baby couldn't suck well, leading to insufficient breast milk production in the mother, and had to be weaned.

Nine mothers weaned their children earlier than they wanted to due to CFS symptoms preventing the continuation of breast feeding. These symptoms included:

• fatigue along with other symptoms, needing more rest (4)
• low milk production (2)
• milk 'let-down' was slow, leading to frustration in the baby, mother believed this was CFS-related (1)
• maternal starvation, dehydration, weakness, and physical separation from baby while in hospital (1)
• maternal weight loss and mastitis (1)
• mother felt breast feeding was 'taking too much out of her' (1)

All people who made a significant contribution during the first 12 months after the birth
	you	partner	family/friends	council help	hired help
bathing baby	18	14	3	1	0
nappy changing	19	17	3	0	0
caring for older children	7	6	4	0	0
house cleaning	15	14	5	4	5
nappy laundering	16	7	2	0	3
cooking	17	15	4	0	0

Need for after-care hospital

Only two mothers had this type of care, one staying two and a half months in a Mother-Baby Unit, where she was first diagnosed with CFS. The other mother stayed in an after care unit due to a problem unrelated to CFS. Others commented that such facilities were unavailable at the time they had their children, or that they were out of range due to living in a remote area. Some wished they had made use of such care, and that it had been suggested to them at some stage during the post-natal period.


Difficulties caring for the baby caused by CFS symptoms

Out of 22 mothers, 18 believed CFS symptoms caused them particular difficulties as follows:

Physical:

• tired arms from holding baby to the breast to feed
• sore back and shoulder muscles from continually lifting and carrying the baby
• difficulty waking at night for feeds
• severe back-pain for several weeks after the birth
• intermittent sleep leading to general tiredness and exhaustion
• unable to rest 100% when time was available
• 3 mothers too weak to walk - had to crawl around on the floor on their knees to attend to baby care
• making meals/extra cooking and shopping a drain on limited energy
• too tired to take the child to play group or other activities
• too tired to check the child overnight when child was sick
• felt she had a heavy weight pressing down on her at all times
  

Cognitive:

• forgetting to change nappies
• forgetting to offer extra fluids when child began on solids
• forgetting what foods the child had eaten - worry about potential allergies
• slow to recognise childhood illness
• overall impaired cognitive function
  

Emotional:

• fear of dropping the baby due to muscle weakness
• lack of patience, tolerance and insight due to own suffering - fear of having caused physical, emotional or mental deprivation in her children
• unable to hold first baby - held hands with the baby in the bassinet - fear of a lack of maternal bonding with this child, compared with younger children born when mother was better
• fear that child had not received enough attention (eg. trips to the park, parent joining school activities), and that this had led to the child being difficult to manage in later years
• felt guilty and helpless for having to struggle to drive the child to and from school on schooldays
• felt despair
• worried that breastfeeding her babies in bed at an awkward angle had caused their ear infections
  

Assistance received in coping with the above difficulties

Partner/family/friends:

• husband cooked all meals
• husband attended to the baby overnight
• husband assisted his wife with her intimate personal care
• family did all the shopping
• grandmother sometimes took the older child
• grandmother took the baby for the day occasionally
• grandmother and husband helped with housework
• friend walked the baby now and again
• mother encouraged independence in her older children
• full time family assistance and support for first 5 months - family members 'lived in'
• several mothers commented on the wonderful assistance and support they had from their husbands and families, and how much they appreciated this
  

Council/hired help:

• council home help (3)
• hired a friend/professional cleaner to do housework (2)
  

Other agencies/therapies:

• while in hospital, mother only had to feed the baby; everything else was taken care of by nursing staff
• massage to help with sore shoulders and arms
• acupuncture
• ultrasound treatment from a physiotherapist to relieve back-pain
• advice from Nursing Mothers' Association helped, particularly one of their counsellors with a comprehensive knowledge of allergies (this mother found her local Maternal and Child Health Centre staff were critical and failed to support her in her difficulties)

Assistance not available at the time which would have helped in child-rearing while living with CFS

• baby-sitting (including baby-sitting exchange networks), a part time or full time nanny, regular childcare to allow mother to rest (4 )
• information from other mothers with CFS, including how to manage the birth (4)
• sympathetic understanding and knowledge about CFS from the medical profession and family (3)
• assistance from family and friends - live nearby (2)
• adequate pain relief during child birth (2)
• free household and personal care assistance (2)
• help with cooking meals (1)
• financial help related to the cost of hospital stay (1)
• Disability Support Pension instead of Sickness Allowance (1)

Self-help strategies

Attitude:

• lowered perfectionist standards to more realistic expectations about housework (7)
• learnt to know what her body could do, and stick within her limits (2)
• learnt to accept help from others (2)
• prayed for the strength to cope one day at a time (2)
• had to be very well organised
• accepted that all new mothers are tired
• concentrated on essential baby-related tasks only
• learnt to accept family and friends who failed to understand CFS and the difficulty she was having (this mother said that others' attitudes were the hardest thing she had to cope with)
• learnt to believe in herself
• learnt to develop a relaxed attitude
• reminded herself that babies are generally very forgivin
  

Rest:

• had an afternoon rest each day (4)
• rested when baby slept (2)
• introduced children to books at an early age, so that at rest times (eg. after lunch) they would lie in their cots and 'read' even if they didn't actually sleep
• performed relaxation exercises
  

Environment:

• baby slept with parents for first few months or for up to five years (3)
• mother slept with the baby on a mattress on the floor with her breast uncovered for feeding
• used disposable nappies (3)
• propped baby up on a cushion to save arms holding the baby while feeding
• breast fed lying down to allow mother to rest
• kept babies/toddlers in bassinets or play-pens to avoid chasing around after them
• used a pram inside to help move the baby around the house
• had a special baby-bath set up on a table with plumbing, to avoid some lifting
• bathed baby every second day instead of daily
• carried baby in a baby-sling to address her fear of dropping him
• sat down on the floor for toddlers to climb on her rather than having to pick them up
• allocated a 'dump' room to throw things in if unexpected visitors called and things were in a mess
  

Meals:

• several weeks' worth of frozen meals prepared in advance for the time immediately after the birth
• increased household stocks of non-perishable foods bought to save time spent shopping
• planned first thing in the morning what to make for the evening meal, and started preparing it early
• used tinned food on bad days
  

Activities:

• decreased social commitments and time spent doing hobbies, especially physically demanding ones
• planned activities carefully to allow for rest times
• had become involved in the running of her daughter's kindergarten as a volunteer, to keep her mind off herself and her problems
• concentrated on spending time with the baby
• showered herself and tidied up the house while baby slept during the day
• played 40 minutes of her favourite sport a week (even though it 'wrecked' her), to prove she was 'okay'
• exercised daily
  

Information and support:

• read as much as she could on the subject of CFS to find out what help was available
• talked with others with CFS, especially those who had improved over time
• developed a good telephone network with friends who were experienced mothers

Respondents' comments

Fertility, pregnancy and post-natal experiences:

 

• waited several years, then took a long time to conceive because of infrequent menstrual periods
• believed CFS affected her fertility, making it difficult to get pregnant
• believed the nausea of morning-sickness was exacerbated by the CFS 'ill' feeling
• had significant CFS-related back and joint pains throughout the pregnancy
• CFS began at the time of her first pregnancy, and became progressively worse with each one, finally developing into 'full-blown' CFS
• believed her CFS was mis-diagnosed as post-natal depression - she was told to go out and push herself into activities, which subsequently made her CFS much worse
• felt better than she had in five years, while pregnant, although now feels the same as before pregnancy
• now has fewer relapses of shorter duration than before the pregnancy
• health made a remarkable improvement through both first and second pregnancies, and has remained stable ever since
  

Career:

• frustrated that unlike other 90s mothers, she is unable to have a career outside the home as well as raise children, because of the physical constraints of CFS
  

Relationships:

• felt frustrated at the thought that she was a burden on her husband, family, and friends
• believed her marriage break-up was related to her husband's inability to cope with a wife with a chronic illness
• thought she and her husband coped better as new parents (compared to other new parents they knew) as they had already worked through many of the difficulties of living with CFS in the early part of their marriage
• was aware that her husband had to make up for a lot of her shortcomings, and that everyone should have such a 'great and helpful' partner
• wouldn't have had the child if she knew how difficult it was going to be, but wouldn't give up the child for anything now
• had few memories of her children when they were little, as it was all a blur of tiredness and struggle due to CFS
• believed it was the most difficult time of her life, and that she had to put her own health second and her babies' health first, but that the happiness her children had brought her and the hope she now has for the future far outweighs the extreme difficulties she had - she continues to struggle through the fatigue and pain with a 'smile on [her] face and a happy heart'
• 'God Bless all our young mums, and especially mums with CFS'

Although it is not possible to generalise from the experiences of a small sample group of 27 mothers, this survey aimed to make a start in gathering information, and therefore makes a valuable beginning. Some comparisons with statistical averages found for the general population of mothers in Victoria have already been made throughout the results section for your interest, but we can draw no conclusions from the figures. The latter sections of the questionnaire allowed for fairly open ended responses which also speak for themselves. However, we would like to emphasise the following points as matters of interest.

Nearly half the sample group reported having had the symptoms of CFS for between 5 and 10 years, and the majority located their degree of disability somewhere between 4 and 6 on the accompanying scale, allowing them an overall activity level of between 50% and 90 % of expected level of functioning. Although somewhat restrictive, this level of activity allows for participation in everyday human pursuits such as bearing and raising children, thus allowing satisfaction and quality of life despite having CFS.

It was interesting to find that our results reflect what has been 'common knowledge' among people with CFS, and that is that 65% of our respondents felt 'slightly better' to 'significantly better' during their pregnancies with their first child. By the time these children were 12 months old, however, 76% of the mothers reported feeling either 'slightly worse', 'the same', or 'slightly better', leaving an even distribution of 12% each, feeling either 'significantly worse' or 'significantly better.'

Extra time spent in hospital following the birth seems to be decreasing at a similar rate for our respondents as that for other Victorian mothers. It is well known that hospitals are under increasing pressure to discharge patients earlier. The extra time in hospital is of course totally dependant upon having well-informed and understanding medical and nursing staff responsible for discharge planning. Several respondents felt they had been sadly neglected and misunderstood in this area. (The average year of birth of the children of mothers with CFS has been estimated from the average age of these children.)

The survey participants appeared to breastfeed their babies at a higher rate than the Victorian average, with 86% breastfeeding in hospital and (still) 2 weeks later, compared with the general population figures of 75.6% and 73.9% respectively. Several comments have been made regarding the convenience of breastfeeding for mothers with CFS, in saving time and energy spent washing bottles and preparing feeds. Although 9 out of 16 (56%) weaned their babies earlier than desired due to CFS symptoms, they breast-fed at a consistently higher rate (than other mothers) right up to 6 months.

Primary baby care and housework was mainly shared between the women and their husbands. Many commented they would have appreciated more access to free (or at least cheap) baby-sitters and home help, especially if they could have called on them at short notice, to fit in with constantly fluctuating energy levels in mothers with CFS.

During the course of our time spent planning and designing the questionnaire, and later collating the results, Bronwyn did some extra 'practical' research of her own, and she and Peter had a daughter, Isabella, in October. We would like to thank all the women who participated in our survey, and we both look forward to continuing our collaboration in designing and producing further resource material to assist mothers living with CFS. We also wish to thank the Committee of Management of the CFS/ME Society of Victoria Inc. for their assistance in printing and distributing the questionnaire.

Bronwyn Carter and Robyn McGarvie
22 November 1995

NB: For further information about joining the support network, 'Mothers with CFS', please send a stamped self-addressed envelope to 'Mothers With CFS', PO Box 5, Carnegie, 3163.

Reprinted from Emerge, March 1996.