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Childbearing and CFIDS:
Making a Difficult Decision

by Dr. Charles Lapp

Deciding to have children is a central event in many individuals’ lives. Having chronic fatigue and immune dysfunction syndrome (CFIDS) makes the decision more difficult. Pregnancy and parenthood for individuals with CFIDS can seem daunting, and it is hard to find good information on the risks. Unfortunately, there is very little formal research on pregnancy and CFIDS, so most of what is known is medical opinion rather than documented fact.

This article aims to provide some general advice, but women who have CFIDS and are thinking about becoming pregnant need to talk through the issues carefully with their partners and with their physicians. Countless couples with CFIDS have successfully borne and reared children. Careful advance planning can help make the experience easier and more enjoyable.

Deciding whether to get pregnant
Clinical experience with CFIDS patients who have become pregnant suggests that the majority either stay the same or actually feel somewhat better during their pregnancies. This has been true in my own practice.

A recent review of medical charts for 27 women who became pregnant while they had CFIDS revealed 25 felt better during pregnancy. On the other hand, approximately one-third of CFIDS patients experience a worsening of their original symptoms after giving birth—almost like a bad relapse.

The reason for this may have to do with the immune system. A similar lessening of symptoms during pregnancy occurs with other autoimmune conditions such as multiple sclerosis. The theory is that the body “turns off” parts of the immune system to prevent the woman’s body from attacking the baby as it would a virus or anything else that is not an original part of itself.

The improvement may also have something to do with hormones produced during pregnancy. A few physicians have treated CFIDS patients with oxytocin, a hormone that women produce when breast feeding. CFIDS physician Dr. Jay Goldstein reported improvement in about one-fifth of the patients studied.

CFIDS patients trying to get pregnant should be aware that they might be at higher risk for first-trimester miscarriage, although this is based on clinical experience, not formal research.

A study published in the September 28, 1998 issue of The American Journal of Medicine did find that a higher percentage of women with CFIDS experienced irregular menstrual cycles, hormone imbalances affecting menstruation and ovarian cysts, which may affect their ability to get pregnant and successfully complete a pregnancy. However, in my chart review of CFIDS mothers, I did not find a rate of miscarriages in excess of the expected limits for the general population. Only 4 of the 27 had experienced one or more miscarriages.

Possible effects on the baby’s health
The majority of women with CFIDS seem to have normal, healthy children. There have been no formal reports of a child being born with CFIDS. However, there is no definitive proof on whether parents can transmit the illness to their babies or whether children can inherit the ability to contract CFIDS later in life.

The question of whether CFIDS is inheritable is often raised, as the illness does seem to run in some families. Dr. David Bell found that during an outbreak in Lyndonville, N.Y. in 1985, more than 15% of individuals diagnosed had another family member ill with CFIDS as well. However, this does not necessarily mean that CFIDS is genetically linked.

Some physicians and researchers believe that CFIDS is caused by an unidentified infectious agent or triggered by a known virus in patients who have a vulnerable immune system. This “vulnerability” could be genetic and inherited, or it could be due to damage to the immune system from various environmental hazards to which the entire family is exposed.

If the illness is caused by a virus, it could be transmitted to an unborn baby as it travels through the birth canal or to a newborn through breast feeding. The chances of this are low, but if parents-to-be are concerned, they may want to consider bottle feeding rather than breast feeding to help lower the chances of passing on an infectious agent.

To breastfeed or not is a personal choice that should be based on what is best for the mother and the baby’s health. Breast feeding does provide the baby with an important source of antibodies and cuts down on the work of preparing formula and bottles. However, bottle feeding means that the mother’s medications will not have to be restricted alter the baby’s birth and other people can help with the feeding (especially at night) to allow the mother to get more rest.

PREGNANCY AND DELIVERY
SARAH’S STORY*

I have had myalgic encephalomyelitis (ME) or CFIDS for 8 years I got pregnant with my daughter, Julia, after two miscarriages and treatment with the fertility drug Clomid.

My pregnancy was pretty uneventful, although some of my obstetric appointments precipitated relapses, since they involved traveling to the hospital and sitting in a hot room for extended periods of time. I also got several nasty colds, which left me sometimes feeling unable to cope with the ME, pregnancy and viruses all at the same time.

Thankfully, my husband John helped out, coming home early to fix supper on the rough days. I also used mail-order companies to stock up on baby supplies so I didn't have to run around town.

I decided ahead of time to have an epidural to help conserve my energy during birth, but still was wiped out. I spent five days in the hospital afterwards. It helped to have a private room, which kept me apart from the noise and let me get better rest.

Although giving birth was painful and exhausting, it was absolutely worth It to have Julia, and I would do it again.


* Personal stories have been excerpted from www.pregnet.org. For a wide range of personal experiences with pregnancy and child raising, log on to the site and click on “case studies.”

Special considerations for pregnancy and delivery
It is advisable for CFIDS patients to stop most of their over-the-counter and prescription medications before they get pregnant because they may be harmful to the fetus. Some drugs, such as antidepressants and pain medications, need to be tapered off slowly, so talk to a physician first.

Women with CFIDS who are planning to get pregnant should also stop taking herbal preparations and nutritional supplements (aside from prenatal vitamins or other supplements recommended by their physicians). In most cases, there is just not enough data to show how they will impact the baby. An epidural can help conserve a woman’s energy during birth and speed recovery afterwards. Pain relief options should be discussed with the obstetrician or midwife well in advance of the baby’s due date.

Also keep in mind that PWC mothers may spend a longer time in the hospital following delivery than healthy new mothers. A British survey of 27 women with CFIDS showed that half spent extra time in the hospital after delivery because of their CFIDS symptoms. You should discuss this possibility with your doctor during pregnancy so he/she is prepared to advocate for you if your insurance provider denies extra time in the hospital.

Coping after the baby is born
Taking care of babies and toddlers requires a considerable amount of emotional and physical energy, and for many women and men with CFIDS, coping with childcare is the largest factor in deciding whether or not to have a baby.

Having a good support network of parents, grandparents, neighbors and friends can help. Couples who do not have a network to fall back on may have to hire extra help, which is something to take into consideration early on. Families with tight budgets might want to contact local universities about hiring a nursing or early education student.

One way to conserve energy is by sitting or lying down to change diapers or feed the baby. Most young babies can only stay awake for about two hours, so anticipating when the baby will be tired and encouraging him or her to sleep will help establish a regular schedule and help new mothers get more rest.

For additional tips, contact a local support group to find out if there are other parents with CFIDS nearby who would be willing to share their experiences and lessons learned.

CARING FOR A CHILD
RUTH’S STORY*

When my daughter was three months old, I became ill. I had to hand Nadine over to be bottlefed and could only lie in bed while she cried.

After six months, I was diagnosed with CFS. I began getting slowly better, but just before Nadine’s first birthday I suffered a major relapse. My husband and I realized we needed to take the problem seriously. We set aside my idyllic images of motherhood and paid people to take care of Nadine and me.

Although this sounds like a horror story, It really isn't. I was concerned about the effect on Nadine of having so many helpers coming and going, but no problems have materialized. And my husband would probably not be as involved with her as he has been. The moment he puts one foot in the door, I am off duty!

Our families and friends have been excellent in terms of support. At first we found it difficult to keep asking for help. Now we have adopted the rule of asking ourselves first if we would do the same thing for that person. If the answer Is yes, we don’t hesitate to accept his/her assistance.

What has suffered most is our social life. I have many friends who bring their babies over to visit during the day, but my husband and I rarely get to spend time together. Lately we have tried to rediscover the simple pleasures of Scrabble, videos and just talking, since I tire so easily.


Dr Charles Lapp is head of the Hunter-Hopkins Center in Charlotte, NC and Clinical Associate Professor of Family and Community Medicine at Duke University.


RESOURCES:
The Action for ME/CFS Pregnancy Network
www.pregnet.org
Action for ME/CFS
P0 Box 1302, Wells, BA 51YE

Moms in Touch
P0 Box 124
Chestertand, OH 44026


This article appeared in The CFIDS Chronicle, Summer 2000, Vol. 13, Issue 3.
© Copyright 2000 The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398 Telephone: 800-44-CFIDS. It is used here with permission.



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