The following excerpt is taken from Chapter 8 of Choosing a Wheelchair:
A Guide for Optimal Independence, by Gary Karp,
copyright 1998, published by O'Reilly & Associates, Inc.
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article is meant to educate and should not be used as an
alternative for professional medical care.
Can disabled women conceive and have babies? Yes, in most cases.
Can disabled men make babies? Increasingly the answer is, "Yes."
Until recently, not many paraplegic men were producing children. But now men with spinal cord injuries are increasingly able to make babies. Likewise, spina bifida will affect the ability to produce children according to the scale of the disability and what mechanics of the reproductive system are affected by the disability. The question of childbearing seems to come up more with regard to spinal cord injury, thus its emphasis in the following discussion.
The Baylor College of Medicine study on women with disabilities found that the medical profession is not serving women well with regard to pregnancy. Providers and the women themselves often operated under the false belief that women with spinal cord injury should avoid pregnancy. Recent ten-year studies have found that women with spinal cord injury are giving birth more often, yet:
Very few clinicians have experience managing pregnancy, labor, and delivery in women with SCI. Unfounded assumptions of poor outcomes may influence clinicians to behave as though risks are greater than they actually are. If the chance of a positive pregnancy outcome is considered slim, or threat to the mother's life too high, clinicians may encourage women who want to have their babies to have unnecessary or undesired therapeutic abortions.1
This paraplegic woman reports being given incorrect medical advice:
I was thirteen when I broke my back. (I'm a complete paraplegic.) I remember being told by my blushing sixty-year-old doctor that I could have children, but only by caesarian section. I have since found out that that is totally untrue.
Women in the Baylor study reported having trouble finding obstetricians or midwives willing to assist them in what were considered high risk pregnancies. The Baylor report says that their own study and previous findings confirm:
Normal labor and delivery are possible, even routine, and generally pose little or no added risk to the mother or baby.2
Physicians and midwives do need to understand issues faced by women with disabilities including autonomic dysreflexia, urinary tract infections, skin breakdown, spasticity, and the effect on a fetus of medications they might be using.
Before you start trying to have a child, address health and emotional considerations. You'll probably wonder what it's like to be a parent with a disability. If you are a woman, you'll want to consider the consequences on your own health of becoming pregnant.
If you are disabled by a genetic condition, you will want to fully understand the odds and consequences of passing such a condition on to a child. This does not mean you should choose not to bear children if there is a chance of passing on a disability. People with disabilities have historically been told that they should not be parents--much less sexual--because it would be wrong to bear a child with a disability. This attitude is widely viewed by people with disabilities as discriminatory. You have the right to bear children, and such testing for genetically passed disability is available to you for your own information. The decision is yours.
Can you parent?
Disabled people are raising children with great success, adapting creatively to child-rearing just as they do to their mobility needs. Children naturally adapt to your parenting style.
Meeting the physical needs of parenting means finding additional ways to adapt to a disability. Slings, seat belts, and velcro come in very handy for securing a child in your lap. Adjustable-height tables make it easy to lift your child from a lower position, then raise the child to a higher level for changing diapers and so on. For parents with limited hand use, buttons and snaps on children's clothing can be replaced with velcro, and loops placed on shoes to help pull them on. A modest degree of family support or paid help might be used during stages when physical demands are greater.
The cultural aspects of parenting can be challenging. Once your child is in school, relationships with other parents and the community are a source of important support, information, and local advocacy. But other parents might not support your need for access to their home, or schools might plan events you cannot attend for lack of access. Some people think that the child takes care of the parent, an assumption that is deeply insulting to parents with a disability, who work as hard as any other on behalf of their children.
Through the Looking Glass is a group in Oakland, California, operating on a five-year grant from the National Resource Center for Parents with Disabilities. At an October 1997 conference, a task force met to review a recent national survey of 1,200 parents with disabilities conducted by Berkeley Planning Associates in Berkeley, California. Here are some of the results:3
- 36 percent of disabled parents reported that their medical providers' lack of disability expertise caused problems in prenatal and birthing services.
- 31 percent reported medical providers' attitudes caused barriers.
- Disabled parents reported needing assistance in: recreation with their children (43 percent), traveling outside the home with their children (40 percent), chasing or retrieving children (39 percent), and lifting or carrying children (33 percent).
- Transportation affected more aspects of parenting with a disability than any other issue. 79 percent reported transportation as a problem which interfered with or prevented routine as well as critical parent-child activities.
- Cost was the most frequently identified barrier to childcare (30 percent), followed by lack of transportation (20 percent).
- 48 percent reported adaptive parenting equipment was too expensive. 32 percent reported adaptive equipment was unavailable or not yet designed.
- 57 percent reported using personal assistance services for help with parenting. 54 percent reported services were not available when needed. 46 percent reported services were unreliable.
- 43 percent reported difficulty finding housing.
- 32 percent reported facing discrimination.
- 14 percent reported pressure to have a tubal ligation. 13 percent reported being urged to have an abortion.
Children of disabled parents tend to be more independent, learning to do appropriate tasks for themselves that are strenuous for the parent. For example, very young children develop the ability to climb onto a wheelchair and maintain their balance. These children also get the chance to have a deeper compassion for all people, drawing a lesson from the perspective they gain through their parents.
Don't be surprised if you find a lack of support for your decision to have a child. Society still imagines that a disabled parent puts a child at risk by not being able to respond to an emergency or chase a child into a place where a wheelchair cannot go. Your family, friends, church members, or colleagues may withhold their support. In Spinal Network, a woman with mild cerebral palsy, is quoted as recalling:
I was told quite bluntly by many that I had no right to have a child. I was told I was selfish; I was repeatedly told that I could not hold, care for, or look after the baby.4
Children of disabled parents don't know the difference. To them, a wheelchair is totally normal. They know that their parents function fully and love fully--doing all they can to provide a healthy upbringing.
Donnie Herman--son of Paul, a paraplegic, and Anne, a quadriplegic--was asked at the age of ten if he would like to see his parents cured. "Cured of what?" he answered.
Getting pregnant: male ejaculation
A man's inability to produce a usable ejaculate is one weak link in a couple's ability to bear children. For example, among those with spinal cord injuries, an injured woman is usually capable of conceiving, carrying the fetus and giving birth. The challenge rests with the man with a spinal cord injury. Sexuality research has focused more on male sexuality and the two issues of sperm retrieval and quality.
Depending on the type and level of impact on the spinal cord, a disabled man may or may not be capable of ejaculation. The response from the head of the penis travels to a given portion of the spinal cord--between T10 and T12--independent of nerves traveling to the brain. It is a completely reflexive process.
Semen and sperm are two separate substances which are combined at the very moment of ejaculation, which is initiated as a biochemical and nervous system response. Three discrete steps take place:
For men with a spinal cord injury, there is less frequency of pregnancy. In a study at the Miami Project to Cure Paralysis, only 10 percent of men with a spinal cord injury who were able to ejaculate during intercourse succeeded in impregnating their mates.5 In men injured at a younger age, the maturation of their testicles may have been hampered. In others, it is possible that irreversible structural atrophy can occur as a result of their disability. Such changes are more likely to occur within six months of injury, if at all. There is a suspicion on the part of researchers that there might be hormonal abnormalities in spinal cord injured men which affect sperm production.
Emission is the step in which sperm and other fluids are secreted from the Cowper's and prostate glands, the seminal vesicles, and from the testicles. These fluids assist the motility--the portion that are actively swimming--of the sperm, lubricate the movement of ejaculate through the urethra and out the penis, and include the sperm itself.
- In the second stage, the bladder neck is closed to prevent semen from backing into the bladder during ejaculation. Disabled men with impaired nerve function might experience retrograde ejaculation, in which semen flows back into the bladder. The acid environment of the bladder and urine is a threat to semen, though if urine is collected and sterilized, it can be possible to harvest semen from urine for artificial insemination.
- Ejaculation is the forcible expulsion of the ejaculate, and the third step of the process. This occurs via the second to the fourth sacral segments. Complete injury in this area will usually preclude ejaculation.
A severe bladder infection can cause sterility. An infection can spread from the bladder to other genital passages, and compromise reproductive capabilities. Marijuana smoking also has damaging effects on sperm. One cycle of sperm production takes three months, during which time you want to recover from any present infection, take extra care with your bladder program and drinking, and abstain from any damaging substances.
Assuming there is no physiological damage, there are products that can help produce an ejaculate. A vibrator can stimulate ejaculation. A product still in development from MMG Healthcare uses a specific frequency and amplitude of vibration to induce ejaculation; the FertiCare vibrator is available from ILTS, Inc., in Evans, Georgia. The manufacturers report a high success rate of ejaculates. Over-stimulation with a vibrator, however, can be a risk to tissues if used excessively. For example, FertiCare and MMG recommend sessions of three minutes with a pause of one minute, repeated up to five times.
With electro-ejaculation, a probe is inserted through the anus to directly stimulate the nerves which elicit the ejaculation response. Men with sensation may require anesthesia for the procedure. The duration and voltage must be carefully monitored to avoid burns. Those with higher spinal cord lesions might be at risk of autonomic dysreflexia. Ejaculation may not occur on the first attempt.
The issue is not limited to gaining ejaculate, it is also about the quality of the product. Spinal-cord injured men have been found to have a normal number of sperm; however, the sperm have lower survival rates and less capacity to make the swim all the way to the uterus and the egg. An average male has a sperm motility of 60 percent. In a study conducted by Nancy Brackett et al of the Miami Project to Cure Paralysis, spinal cord injured men have been found to have rates ranging from 23.5 to 30.9 percent.6
Temperature is a factor in potency. Consider the shape of the male genitalia, in which the scrotum hangs freely to allow the testicles to have plenty of air surrounding them for a cooling effect. Since disabled men sit most of the time, the testicles stay warmer. It has been postulated that this temperature difference compromises semen quality.
This view however, is not without its detractors. Nancy Brackett reports:
A cohort of men with spinal cord injury who walk did not use a wheelchair for locomotion (i.e., they walked with crutches) had semen quality as impaired as that of men who used wheelchairs. Based on these studies, there appears to be no strong evidence to suggest that elevated scrotal temperature in men with SCI is a major contributor to their poor semen quality.7
Other factors suspected of affecting sperm motility, as discussed in the 1996 Brackett study include:8
The quality of semen is apparently affected by the method of collection. In another study led by Nancy Brackett, the percentage of motile sperm was greater for study subjects who used vibratory stimulation as compared to electro-ejaculation, although the sperm counts were comparable.9 They found that there is a larger component of retrograde ejaculate with electro-ejaculation--sperm which had been exposed to the destructive acid environment of the bladder. This seems to account for the difference.
- Methods of bladder management. Men using intermittent catheterization had better motility.
- Infrequency of ejaculation. Intervals of less than one week but greater than twelve weeks resulted in ejaculates with lower sperm concentration or motility.
- Hormonal changes. While men with SCI have been found to have the same levels of testosterone--the male hormone--as uninjured men, some study subjects had elevated levels of follicle-simulating hormone (FSH) and were found to have no sperm in their semen.
The potency problem can be solved by collecting and then freezing ejaculate, preparing it for artificial insemination at a later time. Not all frozen sperm recover the ability to swim, so this process involves gaining several samples, and then combining them with a fresh ejaculate before inseminating the woman. In another study led by Osvaldo Padron at the University of Miami in 1994, freezing sperm of spinal cord injured men was no more destructive than for able-bodied men.10
In some cases, taking hormones can help produce more sperm to aid this process. There may be supplements you can take to improve quality of sperm.
Getting pregnant: other approaches
There are a number of methods for becoming pregnant--that is, when the traditional approach isn't working. They range in cost and complexity. Typically, you would start with the least expensive and least invasive methods.
Some couples are willing to invest almost any amount of time, expense, physical stress, and emotion to have a child of their own. It can be a considerable drain. A single advanced procedure can cost as much as $15,000 per try, while using vibration and at-home insemination is very inexpensive. Most who succeed say that, having had their child, it was well worth whatever they went through. Yet the success rate is not high, so there is the risk of being left exhausted and depressed--and broke! You and your partner need to fully explore your feelings about having your own biological child, and weigh what you discover against current medical options to decide what is best for you.
When the man is able to produce an ejaculate--by any of the methods mentioned earlier--sperm is collected and then the woman is inseminated by injecting the ejaculate with a needle-less syringe. When a procedure such as electro-ejaculation is performed in an office or clinic, the insemination will also be performed there. A couple can increase the odds of success by the use of drugs that stimulate the production of more than one egg per cycle, and by using standard methods to identify the woman's peak ovulation.
When normal ejaculation occurs, the sperm is sent into the cervix at approximately thirty miles per hour. With the injection method, sperm have to be helped along with gravity by having the woman lie on her back and elevate her pelvis for a period of time after injection.
Modern science offers several options for uniting a sperm and an egg. A couple can consider:
- Intrauterine insemination (IUI). Sperm is collected and analyzed for quality and quantity. The specimen is washed and concentrated in preparation for insemination. The woman is monitored for her cycles, and just before ovulation, a hormone is given to induce it. On the day of insemination, a fresh ejaculate is obtained, the concentrated specimen is added to it, and then injected directly into the uterus.
- Intratubal insemination (ITI). This method is recommended when there are two eggs in the same fallopian tube, which is where insemination normally takes place. With ITI, the ejaculate is delivered via a catheter while watching with ultrasound, and the sperm is placed as close to the ovum as possible to increase the chance of success.
- In vitro fertilization-embryo transfer (IVF-ET). Widely known as the test-tube baby procedure, the goal here is to generate as many healthy eggs as possible in order to harvest them before ovulation and perform the insemination outside of the body. In twenty-four hours, it is possible to observe if fertilization took place, and then replace the embryos into the uterus. This procedure has shown only a 12 to 17 percent success rate.
- Gamete intrafallopian transfer (GIFT). Eggs are harvested as in IVF, but rather than being combined outside in a dish, the eggs and sperm are placed back into the fallopian tubes via a catheter. The process proceeds naturally within the woman's body with a 36 percent success rate.
- Zygote intrafallopian transfer (ZIFT). Insemination is performed in a dish to produce viable embryos, and then placed into the fallopian tubes rather than the uterus. This procedure has a 37 percent success rate.
- Intracytoplasmic sperm injection (ICSI). It is now possible to extract sperm from an ejaculate, or directly from either the testicles or the epididymis--a very long, convoluted tube where sperm mature until they are stored until ejaculation. These sperm are then injected into an egg using either the IVF, GIFT, or ZIFT process. Only a few motile sperm are required for the process.
Pregnancy involves major changes to the body and metabolism. Some of the possible effects for any woman include anemia, thrombophlebitis, swelling in the legs, blood pressure changes, carpal tunnel syndrome, infections, constipation, morning sickness, and so on. Any of these problems are minimized by being in good health at the beginning of the pregnancy, and making a commitment to the best pre- and post-natal care.
A pregnant woman using a wheelchair faces additional issues. As you gain weight, there will be increased ischial pressure and added risk of skin breakdown. Be certain to have a proper and well-maintained wheelchair cushion. A different product might be necessary during the later stage of the pregnancy. You will need to do pressure relief push-ups or change your posture more often to prevent sores, so some upper body exercise for added arm strength might be in order. As you gain weight you might even need a wider wheelchair, especially if you are being pinched in the hips where there is risk of skin breakdown. Take measures to ensure the health of your skin, keeping it very clean, optimizing your diet for healthy tissue and circulation.
Any medications you take for bladder control, stool softening, control of spasms, or other implications of your disability need to be completely reviewed with your doctor at the earliest possible stage of your pregnancy. Bladder infections during pregnancy present a risk to the fetus. Certain antibiotics used to treat infections can be even more dangerous to the baby. Some women use Valium to control spasms. There are cases of babies who have had to endure Valium withdrawal after birth.
Miscarriage rates are no different for disabled women than for the general population. Spinal cord injured women are at no increased risk of children with birth defects. Birth weights are typically within normal ranges. Women with multiple sclerosis or muscular dystrophy may pass on genetic tendencies to these disabilities.
You might not sense the early signs of labor if you have spinal injury above T10, and could miss the opportunity to prepare for delivery before your water breaks. Normal vaginal delivery is possible in most cases, but if you are without use of abdominal muscles the doctor might need to assist in lieu of your inability to push down. Forceps, a vacuum extraction unit, or an episiotomy--in which incisions are made to enlarge the vaginal opening--might be called for. Cesarean delivery may be necessary in some cases, but no more often than for nondisabled women.
Some doctors recommend beginning cervical checks at twenty-six weeks since there is some statistical evidence of increased risk of premature delivery by spinal cord injured women. They might even recommend hospitalization after thirty-two weeks to monitor the pregnancy as closely as possible. There is risk of dysreflexia during delivery for women injured above T6, a fact that your obstetrician should be aware of.
Disabled women can breastfeed. This is a reflexive response initiated by the baby's sucking. Some women injured above T6 experience a decrease in milk production after a time due to lack of nipple sensation.
For a woman using a wheelchair, pregnancy has its extra challenges. For this couple, it raised questions about having another child:
My husband thinks having one child is perfect and doesn't even want to consider a second. I truly believe it is for the most part because he doesn't want me to have to go through the ordeal of pregnancy again. It was hard on me, but in a way I think it was just as hard on him to see me lose a little bit of my mobility. He thinks our son is wonderful, but doesn't see a need to risk a second pregnancy. I am still torn on the subject.
Pregnancy is a demanding experience for any woman. When you provide for special needs while working with an obstetrician and/or midwife who understands those needs, you have the best chance of a manageable pregnancy in which you maintain good health.
Only some couples unable to have a child of their own can afford the new high-tech approaches to producing a birth. Financially and emotionally, the cost gets too high. Couples may also choose not to have invasive hormonal or surgical treatments. Adoption is a possibility, but this is not an easy option either.
Most children available for adoption are from an ethnic-minority background. In the U.S., most parents looking for children to adopt are Caucasian and--like other prospective parents--prefer to find a child of the same race as their own. The competition is pretty stiff, since able-bodied parents tend to be given the advantage by agencies. Another portion of the children have health problems or were abused. It is harder to find homes for these children. They are a challenge for any parents to raise, but all the more for a disabled parent, depending on their capacities and resources. But for someone with a disability who feels a passionate calling to share his or her love as a parent, these issues can be resolved.
Finding your own way
Yes, there are a lot of adjustments to make, and some issues which are complicated in the already treacherous milieu of love, sex, and babies. But just as there are roadblocks, there are discoveries unique to sex with a disability, if you have the patience and the adaptability to find them. If you can overcome the initial obstacle of being discouraged by all the cultural messages of youth and body image and the over-emphasis on intercourse as sex, possibilities will expand. Your sexual nature is a gift of your existence, and no disability--no matter how severe--disqualifies you from the capacity for intimacy and sensuality.
D. H. Rintala, et al. "Dating issues for women with physical disabilities,"
Sexuality and Disability 15, no. 4 (1997): 219-42.
- Rintala, "Dating issues for women with physical disabilities," 219-42.
- Linda Toms-Barker and Vida Maralani, Challenges and Strategies of Disabled Parents--Findings from a National Survey of Parents with Disabilities, (Berkeley, California: Berkeley Planning Associates, July 1997).
- Sam Maddox, Spinal Network, (Malibu, California: Miramar Publications, 1994), 354.
- Nancy L. Brackett, et al., "Endocrine Profiles and Semen Quality of Spinal Cord Injured Men," The Journal of Urology 151 (1994): 117.
- Nancy L. Brackett, M. S. Nash, and C. M. Lynne, "Male Fertility Following Spinal Cord Injury: Facts and Fiction." Physical Therapy 76, no. 11 (1996): 1226.
- Brackett, "Male Fertility Following Spinal Cord Injury," 1225-6.
- Brackett, "Male Fertility Following Spinal Cord Injury," 1228.
- Nancy L. Brackett, R. P. Padron, and C. M. Lynne, "Semen Quality of Spinal Cord Injured Men Is Better When Obtained by Vibratory Stimulation Versus Electroejaculation," The Journal of Urology 157 (1997): 152-6.
- Osvaldo F. Padron, et al., "Semen of Spinal Cord Injured Men Freezes Reliably," Journal of Andrology 15, no. 13 (1994): 268.