(Originally published in 1995; updated in 2009)
In 2008, the Discovery Channel aired a documentary “Paralyzed and Pregnant,” the story of Michelle Carston, a C5 quad who delivered a healthy son, Pierce, after a difficult pregnancy. Carston spent eight and a half months on bed rest, so many potential moms with spinal cord injuries wondered: Is this the norm?
Although there are possible complications, some quite serious, many women with disabilities have relatively uneventful pregnancies. The most important thing is to find a doctor who knows about SCI.
“The medical profession is one of extremes,” says one physiatrist. “Some doctors are very knowledgeable about pregnancy and spinal cord injury, whereas others have never met a disabled person. Women must be well-taught themselves,” he emphasizes. “Then they should choose a doctor and pay close attention to whether he is really listening to them. If he’s not, go somewhere else.”
Bladder: Urinary infections usually increase during pregnancy as the growing fetus presses on the bladder, urinary tract and/or catheter. The problem is that most antibiotics pose some danger to the fetus. Deborah Soliz, C4-5, says her urologist twice prescribed medications that her obstetrician nixed. “Instead, they gave me drugs that kept the infection at a low roar until I delivered.”
The National Task Force on Sexuality and Disability has generated a list of some of the antibiotics to be avoided during pregnancy, which includes aminoglycosides, erythromycin, nitrofurantoin, chloramphenicol, sulfonamides and tetracycline. Some women report success with preventive measures — drinking large quantities of cranberry juice, for instance — but if you do get an infection, check all prescriptions with your obstetrician.
The limits on antibiotics increase the severity of infections, which, in turn, increases the incidence of dysreflexia for quads and paras T6 and above. Full-blown dysreflexia is not common during gestation, but most women report some symptoms at some times. Any dysreflexia, however, should be taken seriously and controlled in consultation with your doctor.
Janine Wigmore, a C4 quad from Victoria, Canada, says that her doctors chose to hospitalize her for dysreflexia after her baby kicked, knocking out her indwelling catheter and causing a bladder infection.
Women who catheterize intermittently also report more infections, adding that they must cath more frequently, and that they often experience leaking. Soliz wore padding all the time during her pregnancies. “I just peed whenever,” she says. Generally, bladder management medications such as Ditropan are not recommended in the first trimester, so be prepared for accidents and be aware of the increased risk of skin breakdown.
Bowel: Constipation may cause problems for many women. Anne Herman, a C6-7 quad from San Diego and mother of one son, says that constipation caused her almost continual chills and sweating during parts of her pregnancy. “I’d sweat right through sweatshirts and use a hair dryer to dry myself off,” she says. Herman says that the level of discomfort was manageable without drugs, and that she never experienced full-blown dysreflexia from the constipation. She simply ate as much fruit as she could and swam often, which seemed to help.
Remember, you will be eating more than usual, and changes in digestion may require increasing the frequency of your bowel program or increasing the use of stool softeners to avoid dysreflexic distress. Too-frequent bowel movements plague some women — a complication that is not unsafe so much as inconvenient. Wigmore says that “I can feel when I need to go, so it was just a matter of saying to my attendant: ‘Here we go again’ — about four times a day.”
Spasticity: Medical literature reports that spasticity drugs such as diazepam and phenytoin are addictive to the fetus and also result in a slightly higher incidence of cleft palate in infants. No studies on baclofen have been reported, but some doctors recommend stopping its use to be safe. (Note: Sudden withdrawal can cause seizures, so dosage should be tapered off over several days.)
Without medication, many women experience more spasms, but sometimes the body responds to pregnancy in unusual, forgiving ways. For instance, Kelly Kincaid, a C5-6 quad from Tupelo, Miss., says she quit taking her meds and noticed no increase in spasms.
As a general rule, specialists recommend that for all bladder, bowel and spasticity concerns, obstetricians should consult with SCI doctors to weigh the risks of taking a woman off meds against the risks of leaving her on them. Risks change over the course of the pregnancy, and each medication should be reviewed each trimester.
Skin: Women usually gain 20 to 30 pounds during pregnancy, which not only increases pressure to the backside, but also reduces mobility — both of which put them at higher risk for skin breakdown. Kincaid says that when she was eight and a half months pregnant, her skin got redder quicker. “I took good care of it, though. I rested more and didn’t get a pressure sore.”
Corrine Colon, a C6-7 quad from Bethlehem, Pa., says she had no skin problems during her pregnancy. “I had no problems, probably because I was very careful about weight gain,” she says. “I gained only 19 pounds because I was afraid I wouldn’t be able to get around.” If a sore does develop, early intervention is especially critical, as any infection jeopardizes the fetus.
Respiration: Lung function is compromised for quads, and an expanding uterus can further affect the ability to breathe easily. In most cases, however, proper positioning and rest will prevent serious problems, doctors say.
Wigmore had trouble breathing in the latter stages of her pregnancy, so she propped herself up with a foam pad when she was in bed. When Soliz was seven months pregnant, her girth forced her to stop wearing the tight abdominal binder that improves her diaphragm function. She was able to wear a looser binder for the last two months, but that had its consequences: “I had to stop driving because I was getting very dizzy and almost blacking out,” she says.
Herman spent a week in the hospital after she came down with bronchitis when she was about seven months pregnant. “I think I was just overdoing,” she says. “I should have cut back my work hours sooner.”
Miscellaneous: You may experience several other symptoms during pregnancy, including headaches, nausea, fatigue, temporary reductions in mobility, swelling in the lower extremities, problems transferring and anemia. The first four problems are pretty much part of the joy of motherhood. For swelling, doctors recommend circulation-promoting hose, extra rest and passive range-of-motion exercises. For transfers after six months, they advise making sure that someone is nearby, or even bumping up attendant care to prevent falls. Treat anemia quickly, they say, as it decreases resistance to infection and increases the likelihood of skin breakdown.
Finally, a word on expanding body parts: Although all women have to contend with the fashion risks of maternity wear, you may find yourself in need of bigger, less flattering hardware. Ask yourself if you will need a loaner chair when you get larger, and plan accordingly. Also, notes Soliz, “the cutout in my lapboard had to get bigger and bigger — I called it my maternity lapboard.”
Labor and Delivery
Doctors recommend that the cervix be monitored for dilation once or twice a week after the seventh month of pregnancy. Why? Because many women with spinal cord injuries won’t detect contractions, and delivery is often premature.
Women interviewed for this story described their contractions as either general discomfort, abdominal tightness, difficulty breathing or pressure on the bladder. Sometimes the only indication of labor may be “a sense of impending doom.”
So you’re thinking, “OK, this is where I get my due — I won’t have to feel the pain of childbirth!” Yes and no. True, you won’t feel contractions most women do; nonetheless, your uterus, back and vaginal canal are still experiencing acute “pain,” which puts you at very high risk for dysreflexia during labor and delivery.
Full-blown dysreflexia is a potentially life-threatening condition that results in a rapid increase in blood pressure, pounding headache, slowed heart rate, sweating and goose bumps. If dysreflexia continues unchecked, it can cause stroke, heart attack, blindness or death.
Fortunately, there are ways to stop dysreflexia — just make sure the entire birthing staff is aware of them. In one malpractice case, the doctor understood the symptoms and treatment of dysreflexia, but he didn’t communicate them clearly to his staff.
Medical literature lists two ways to stop dysreflexia:
• “Remove the noxious stimulus.” Usually, this means have your baby. “When my son was crowning,” says Soliz, “I started to get a headache, the first sign of dysreflexia. But as soon as his head went through, my headache was gone — before they could even start any drugs.” Often doctors will speed delivery with the use of forceps or a C-section, but, generally, they say dysreflexia due to pain should be treated with drugs, in case the baby isn’t born immediately.
Dysreflexia can also be caused by bladder or bowel obstruction during labor. The bladder may become distended during pushing or as a result of too much fluid running through an IV. A nursing care plan developed by Sharp Rehabilitation Center in San Diego says to cath if necessary, but remove the catheter when pushing begins again. The plan suggests sticking to a woman’s regular bowel program and using an enema only as a last resort in the case of impaction.
• “Block the ‘pain.’” This is done with an epidural anesthesia or a spinal block, a narcotic analgesic such as Demerol, or occasionally with a calcium channel blocker such as nifedipine.
Herman delivered vaginally with no anesthetics and got dysreflexia, for which doctors administered sodium pentathol after the fact. “If I did it again,” she says, “I’d get a spinal block to prevent the dysreflexia in the first place.”
Some women may not be good candidates for a spinal block. Says Wigmore: “I had a C-section, and they knocked me out for it. They couldn’t give me an epidural because of the rods in my back, but they were worried about dysreflexia, so they put me totally out.”
Corrine Colon also had a C-section, but doctors didn’t give her anything to prevent dysreflexia. When she started to show symptoms, they treated her for high blood pressure instead of dysreflexia. “Later, I was telling my SCI nurse about it,” Colon says, “and she asked me why they didn’t just treat for pain even though I couldn’t feel it.”
Fortunately, Colon suffered no serious consequences of the dysreflexia, but her experience points up an important distinction that doctors must make. “There is a need to distinguish between dysreflexia and pre-eclampsia, a condition of hypertensive crisis often experienced by non-SCI women,” says Dr. Indira Lanig of Craig Hospital. Obstetricians unfamiliar with SCI may not realize that simply treating the symptom of high blood pressure will not eliminate its cause, dysreflexia. Lanig recommends Demerol because it doesn’t dampen remaining motor or sensory function that might be useful during delivery. As a final caution, inducing labor can cause acute dysreflexia, which can result in death. If induction becomes necessary, doctors should give the woman an epidural anesthetic first.
Positioning: You will need to pay special attention to positioning during labor and delivery to avoid aggravating your skin. The Sharp Rehab plan calls for changing position every two hours and suggests lying on your side with extra pillows under your back and legs, or reclining with the bed at a 45-degree angle. Extra padding should be added to the stirrups to prevent pressure areas, and fetal monitor equipment and straps should be checked every hour for pressure points.
Surgery: Some specialists say that C-sections are still being performed at too high a rate for spinal injured women, and that most should be able to deliver vaginally. “The uterus works as well after paralysis as it did before,” he says. Of course, the procedure may be needed for conditions that can affect all women, such as breech birth or gestational diabetes, and, as noted, it may be used to stop dysreflexia.
Episiotomy also may be performed too often. With paralysis, the muscles are so relaxed, there are usually no tears; if you do get the incision, medical literature suggests closure with non-absorbable thread. Apparently, de-nervated areas don’t absorb cat-gut-type sutures, and doctors say using them often leads to a sterile abscess or to wound splitting.
Neonatal health: There is evidence that women with spinal cord injuries have low birth weight babies more often than nondisabled women. A study by Amie Jackson and colleagues at Spain Rehabilitation Center in Birmingham, Ala., compared birth weights of babies born before the mother’s injury to those born after injury. The study found that 4 percent of pre-injury women had babies below 5 pounds, 6 ounces, whereas 14 percent of post-injury women did.
An earlier study at Craig Hospital found that the average birth weight in the general population is 7 pounds, 5 ounces, and among SCI mothers it’s 6 pounds, 7 ounces. The Spain Rehab study also found that 15 percent of babies born to spinal injured women had difficulty breathing, compared to 7 percent of babies born to pre-injury mothers. The reasons for this are not clear.
Breast-feeding: A lot of women with SCI don’t produce enough milk to keep mother and baby fully satisfied. Some also say that they experienced dysreflexic symptoms from breast-feeding. “Postpartum, I sweat a lot, got very thin and had dark circles under my eyes,” says Soliz. “Breast-feeding seemed to make it worse, so I didn’t do it for long.” If breast-feeding is important to you, consider augmenting your baby’s diet with formula, and low doses of ibuprofen before feeding can help with dysreflexia.
So is having a baby worth the extra work and concerns that come with SCI? “I say, “Go for it,’” says Wigmore. “My life wouldn’t be complete without it.”