Special Deliveries

By Lisa Bendall

When Jennifer Roberts’ daughter outgrew her crib, Jennifer decided to store it at her parents’ house, rather than pass it on -- in case she ever became pregnant again.

Her mother was aghast that Jennifer might have another child, and told her: "You should just be grateful for the one you have." Later, when she was sorting things and found the crib, she quietly gave it away to Jennifer’s sister-in-law.

Although Jennifer’s parents adore their granddaughter and have an active role in her life -- they "love my daughter to death," says Jennifer -- it has been extremely difficult for her family to accept her decision to become a parent. Jennifer says they definitely "don’t approve." Jennifer (who did not want her real name used) is unmarried. She also has cerebral palsy. The crib her mother gave away had been specially modified to accommodate Jennifer’s wheelchair.

Having a child can be one of life’s most enriching experiences, whether or not you have a disability. Unfortunately, this is still one area where society has difficulty welcoming full participation by people with disabilities. Adoptions are sometimes denied; even your own family may not believe in your competence as a parent. Two years ago, a couple who gave birth in a Toronto hospital and happened to be blind were temporarily blocked by Children’s Aid from taking the baby home.

Nevertheless, there are also many professionals who are forging ahead with exciting technologies and procedures to assist people with disabilities in becoming moms and dads. These visionaries know that you need love and commitment, not working legs or hearing ears, to raise a child successfully.

While many people with disabilities are able to have babies without medical intervention, today there are new opportunities for many others who, 10 or 20 years ago, would have been completely unable to have children.

When Stephen Little sustained a spinal cord injury as a teenager, it was considered impossible that he would ever father a child. He was paralyzed at the T12 level. While a spinal cord injury does not impact on a woman’s ability to get pregnant, it can interfere with the ability of men to ejaculate, and therefore traditionally rendered most men infertile. At the time of Stephen’s accident, having biological children was simply not an option for men like him.

But a lot has changed in a couple of decades. By the time Stephen got married three years ago, advancements in reproductive technologies as well as specifically in the area of male spinal cord injury meant new possibilities, and new hope. Stephen and his wife, Tracy MacCharles, "were determined to become parents," he says.

Today, their baby son and daughter are already outgrowing the lap board Stephen made for carting them around in his wheelchair. He says parenting is "a lot of work, and it’s a lot of sleepless moments, but by and large, it’s very rewarding and very satisfying." He’s thrilled to have added the dimension of fatherhood to his life.

Several clinics across Canada currently specialize in the fertility of men with spinal cord injury. The longest-standing clinic, the Sperm Retrieval Clinic in Vancouver, has been helping men with spinal cord injuries become dads since the early 1980s.

These clinics focus on two revolutionary methods of sperm retrieval. The first, electroejaculation (EEJ), involves inserting a probe into the rectum and sending a current to stimulate the glands responsible for ejaculation. It may sound atrocious, but for someone with a complete injury, there may be no pain. Medication can alleviate the vague discomfort experienced by others. Only for men with complete sensation is the procedure done in hospital under general anesthetic.

EEJ is successful in many men who have not been able to ejaculate since their accident, and carries only a very small risk of rectal trauma. However, autonomic dysreflexia -- a stimulus reaction that can include sweating, a pounding headache and dangerously high blood pressure -- is a greater risk and may need to be controlled with drugs.

A newer method of sperm retrieval, called vibrostimulation, is much less invasive and generally tried first. This involves applying stimulation directly to the outside of the penis with a modified vibrator. Again, autonomic dysreflexia can occur, and blood pressure should be monitored the first time the procedure is done.

Although EEJ has a better success rate overall, it must be performed by a trained urologist -- and the procedure is not even remotely romantic. Vibrostimulation has clear advantages, says Jan Pelletier, R.N., coordinator of Toronto’s Robson Clinic, which for a few years now has been exploring techniques to help men with spinal cord injury ejaculate. With vibrostimulation, "the couple can take control over the situation," Jan says. "There’s the potential for them to be able to do this away from the clinic."

Once the sperm is collected, there may still be great hurdles to overcome. Quality and motility of sperm are reduced in men with spinal cord injury. Enter reproductive technologies that have been developed for the general subfertile population. Common techniques used to enhance the efficacy of sperm range all the way from "washing" it, to inseminating directly into the uterus, to in-vitro fertilization, to the very high-tech intracytoplasmic sperm injection (ICSI) -- in which a single sperm is injected directly into the centre of an egg to facilitate fertilization.

This is not to say that fathering a child in the privacy of one’s home is out of the question for men with spinal cord injury. Some men report ejaculatory success at home with regular drugstore vibrators or even extended masturbation. The modified vibrators used in clinics are also sold for home use (costing $100 or $1,000, depending on the model used). Once an ejaculate is collected, the wife might be able to achieve pregnancy by inseminating herself, using a syringe (without a needle!).

But at home there is still a risk of autonomic dysreflexia, which occasionally can be life-threatening if not controlled. In addition, depending on the quality of the man’s sperm, the chances of getting pregnant this way may be reduced.

Even with the assistive technologies now available, a couple might have only about a 25 or 30 per cent chance of taking home a baby. So fatherhood is still not guaranteed. But the Sperm Retrieval Clinic’s Dr. Stacy Elliott has noted in her research that for men with spinal cord injury -- who were told at the time of their trauma that there was no way they could ever have children -- just discovering they have the potential is a wonderful gift. "If no conception occurs, there is grief, but also gratitude that such a child was possible," she writes.

To find out if a child was possible for him, Stephen Little visited the Robson Clinic, where, so far, 10 babies have been born to its clients. In fact, one couple who had twins six years ago recently conceived a third child through Robson -- "One family came back for more," Jan Pelletier laughs.

Stephen discovered that the best method for retrieving his sperm was electroejaculation. "The process is remarkably crude and, at the same time, relatively sophisticated," he says.

Once a sperm sample was obtained, it was examined for quality and it was determined that his motility (number of good swimmers) was fairly low. They decided to go straight for the most state-of-the-art method of assisted conception available, the intracytoplasmic sperm injection (ICSI).

"It’s astounding technology if you see it under the microscope, as we did," says Stephen.

Fertility drugs enabled Tracy to yield a high number of mature eggs at once. The eggs were harvested and several zygotes were produced, with some transferred to Tracy’s fallopian tubes (usually five, to increase the odds of at least one implanting) and the remainder frozen for future use.

Initially, the couple did a few trials with no success. The zygotes -- the fertilized eggs -- were not "taking" in Tracy. Discouraged at the thousands of dollars they had spent without results, Stephen and Tracy followed up on a friend’s referral and met with a new reproductive specialist. This new doctor did thorough testing to establish why fertility treatment might not be working for Stephen and Tracy, and the treatment was modified. He "cranked Tracy up" on fertility drugs and permitted the couple to administer the injections at home.

"I inserted quite a healthy number of needles into Tracy," Stephen jokes. But Tracy points out that the reduction in the stress of going to the clinic for the injections helped her psychologically, and probably improved their chances. She calls the protocol "empowering" (and her husband "brave" for being willing to stick three-inch needles into her!).

In their fourth cycle with the new doctor, each of the critical steps was met with success: the sperm retrieval, the fertilization, the unfreezing of the zygotes, and the intrafallopian transfer -- and then the news was incredible. Tracy was finally pregnant... with twins!

"That was the beginning of yet another long, worrisome, torturous process, because when you’re having twins you’re in a higher risk category," says Stephen. "We literally altered vacation plans so as not to jeopardize the pregnancy!"

But the pregnancy went well, and Genevieve was born on December 12, 1997, followed by her brother Travis a few minutes later.

"Until those kids showed their little faces, I was probably guarding my feelings," Stephen admits. But now, "When your son or your daughter looks up with all that love in their eyes, you can’t help but forget everything that went on in the past, and live for the moment.

It’s a nice feeling to be able to say I have children," Stephen says.

Jennifer Roberts also yearned for that feeling. Since the age of 25, she, too, had known she wanted to have children. When she turned 30 and was still not married, she decided that she would take matters into her own hands. She went to an open meeting for "single mothers by choice." It was there that she got information about a local sperm bank and fertility clinic.

Jennifer says that the clinic does extensive prescreening for women, especially single women, who want to use donor sperm. She was subjected to three or four months of psychological screening, tests for "every sexually transmitted disease known to mankind," and income testing before they would admit her into the program.

They also started monitoring Jennifer’s hormone levels to track ovulation. The day she was due to ovulate, she went in assuming the insemination would be done. Instead, to her surprise, she was led unsuspecting into a room full of doctors, who immediately began asking her questions about her disability and why she wanted to be a mother.

Jennifer refers to the experience as a bear pit session. "I was totally unprepared," she says.

Finally, the chair of the meeting explained that they were unwilling to inseminate Jennifer -- because they had already helped a woman with multiple sclerosis get pregnant, and she had been unable to care for the child.

What hurt the most, says Jennifer, is that they had not said anything about this before, even throughout the invasive testing. "I expected resistance. I just wish they had been forthright about their resistance."

The clinic told her they’d have to do more psychological tests before they could proceed. "I was just sweating," says Jennifer. She still had a card from another doctor who had been at the single mothers’ meeting, so she went straight over to his office -- sitting there for three hours until he agreed to see her without an appointment.

This doctor was willing to treat her through his private practice, on one condition: that she write a 30-page essay describing how she was planning to handle the various stages of her baby’s development, in light of her physical abilities. It was not his usual requirement of single mothers, but he said that her paper would protect him should she ever "drop the baby on its head." He would be able to demonstrate how Jennifer had said she would handle parenthood.

Jennifer’s routine involved daily blood work when she was getting ready to ovulate, insemination for three consecutive days around the time of ovulation, and hormone injections to ensure ovulation.

Jennifer was lucky; she got pregnant after only four months. Her daughter -- pretty and vivacious like her mother -- will be six years old this year and is a joy.

What was less than joyful were the reactions of Jennifer’s relatives, which she heard all about through the family grapevine. One person told her mother not to worry -- that the Children’s Aid would come and take the child away if Jennifer messed up. Another family member mused that Jennifer "must be gay, because who would want to have a baby this way?" In fact, the man Jennifer is dating is unable to father children, and the option of finding someone to sleep with just for the purpose of getting pregnant "seemed unfavourable to me," Jennifer says.

But she stresses that although her family has been uncomfortable with her choices, they have a close relationship with her daughter and are a lot more supportive now. It was an evolution: "They had to grow into it."

And Jennifer’s daughter has been a real ally in her decision to have a second baby. "She’s my own private cheering section," says Jennifer. "When mom and dad got cranky, my daughter asked them: ’Why are you so upset? I want a baby brother, and my mom’s a good mom. Just because we don’t have a dad yet...’"

Jennifer’s second successful pregnancy took longer to achieve and included one miscarriage. Hormone suppositories were added to her regimen to promote successful implantation. "It’s hard in terms of hanging in there. It’s a seven-day commitment," she says. "You can’t say, I don’t feel like going in today."

After 15 months of trying to conceive, Jennifer is expecting her second child in August. The sperm donor for both children is the same.

Jennifer notes that, in making the decision to become a single parent with a disability, "You have to be prepared for most people not to understand." She says you may not initially get support from those people you might have expected it from, and you have to be strong enough by yourself -- not physically but emotionally.

"You have to be able to perpetuate your own joy," Jennifer says.

Costs for all of these procedures can be huge, depending on the level of technological intervention used. Inseminating at home costs little or nothing. For Jennifer, the hormones, donor sperm and sperm washes, plus transportation back and forth from the clinic, cost between $800 and $1,000 each month. For Stephen and Tracy, the ICSI fertility treatments were about $7,000 per trial. Fees for the ejaculatory procedures done in a clinic are unregulated and they vary widely across the country -- anywhere from $100 to $500 per session.

Individuals looking into these options must be able to make a significant financial commitment as well as an emotional one.

Stephen notes that Ontario’s health insurance plan will pay for fertility treatments for women with certain reproductive barriers, but not men -- a policy Stephen considers discriminatory against men who have spinal cord injuries.

In general, there is little in the way of financial support for people with disabilities who want to have babies. "As soon as I started to think about a second one, I started to save money. We didn’t suffer, but we didn’t go anywhere," Jennifer says.

Despite barriers and high costs, it is certainly easier to be a parent with a disability now than it was a generation ago. A handful of support organizations exist; even some literature is geared specifically to parenting with a disability. Perhaps, as moms and dads using scooters or white canes are more prevalent in their communities, there gradually will be greater widespread acceptance in society.

After all, parents with disabilities have much to teach and offer their children. Not the least of which is a greater sensitivity to people who don’t happen to fit the norm. And anyway, from a child’s perspective, moms or dads who use wheelchairs can be pretty neat... for one thing, they always have a lap.

(Lisa Bendall is the Managing Editor of ABILITIES.)


ORGANIZATIONS:

The Parenting Network
c/o Centre for Independent Living in Toronto (CILT), Inc.
605 - 205 Richmond St. W.
Toronto, ON M5V 1V3
Phone: (416) 599-2458
TTY: (416) 599-5077
Fax: (416) 599-3555

U.S. National Resource Centre for Parents with Disabilities
c/o Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710-2204
Phone: (510) 848-1112
Fax: (510) 848-4445
E-mail: TLGInfo@lookingglass.org
Website: http://www.lookingglass.org

Childbearing and Parenting Program for Women with Disabilities
c/o School of Nursing
University of British Columbia
T201 - 2211 Westbrook Mall
Vancouver, BC V6T 2B5
Phone: (604) 822-7444
Fax: (604) 822-7466
E-mail: carty@nursing.ubc.ca

SPERM RETRIEVAL CLINICS:

Dr. Robert MacMillan
The Robson Clinic
Toronto, Ontario
Phone: (416) 422-5551, ext. 2060

Dr. Stacy Elliott
The Sperm Retrieval Clinic
Vancouver, British Columbia
Phone: (604) 875-8266

Dr. John Grantmyre, Urologist
Halifax, Nova Scotia
Phone: (902) 420-0044

PUBLICATIONS:

Spinal Network: The Total Wheelchair Book
Cost: $39.95 (U.S.) + $7.00 shipping
New Mobility Bookstore
Phone: 1-800-543-4116, ext. 480

Disability, Pregnancy & Parenthood International
A quarterly international magazine.
5th Floor, 45 Beech Street
London, U.K. EC2P 2LX
Phone: (0171) 628-2811
Fax: (0171) 628-2833

Making Babies: A Complete Guide to Fertility and Infertility
By Heather Pullen and Jocelyn Smith
Published by: Random House of Canada Ltd.

"I Want to Be a Mother. I Have a Disability. What Are My Choices?"
Brochure cost: 30›
DisAbled Women’s Network (DAWN) Ontario
P.O. Box 781, Stn. B
Sudbury, ON P3E 4S1