I have received at least one or two questions a month about pregnancy and delivery issues from couples who are considering having a child. There is a paucity of information on the subject, which makes it very difficult for persons with TM to make these very important decisions about whether they should become pregnant and have a child. Often times I refer these people to Paula; she is able to present her own experiences about pregnancy, delivery, and child-rearing issues. Dr. Lynn graciously responded to my request to present some information that might assist persons with TM in making these decisions. I also asked Paula to prepare an article, which enumerates the information she has been sharing with persons who she talks to about these issues regularly. We recognize that there is not enough information presented here upon which you are going to base these decisions. It is our hope that there is sufficient information presented by Dr. Lynn and Paula to stimulate your thinking about the issues and to help you frame the questions that you would like to ask your own physicians in making your decisions.

There does not appear to be much information in the literature specific to Transverse Myelitis that would assist couples in making decisions about pregnancy. However, I am aware of MS research that has tracked women during and after their pregnancies; thus, it is possible to offer some recommendations to women with MS based on the results of these studies. What happens with MS is that there is a significant decrease in attacks of MS during the second and third trimesters of pregnancy, but then in the six months after delivery, there is an increase in MS attacks. The results of a small study suggest that women who had a child were not any worse off then women who did not five years after the delivery. This type of information is not available about TM.

An important issue for the individual to consider is whether there is any sign of an underlying autoimmune disease such as SLE or MS, as pregnancy can affect disease activity in these illnesses (although not predictably). It is difficult to assess how a monophasic illness (one occurrence), such as typical Acute Transverse Myelitis, would affect a woman during pregnancy and delivery.

The following is a summary of a journal article (Berghella, V., Spector, T., Trauffer, P, Johnson, A.; Department of Obstetrics and Gynecology, Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. "Pregnancy in patients with preexisting transverse myelitis," In Obstetrics and Gynecology. Vol. 87, no. 5, Pt 2 (May 1996): 809-12.) describing two cases of women with Transverse Myelitis.

Background: Although several cases of pregnancies of traumatic spinal cord injury patients have been reported, to our knowledge, only one case has been reported detailing the perinatal outcome in a patient with preexisting transverse myelitis. Case: The prenatal course and pregnancy outcome in two patients with preexisting transverse myelitis is presented. The major complications encountered were urinary tract infections and mobility problems. Conclusion: Patients with preexisting transverse myelitis can have successful pregnancies with term vaginal deliveries. Prevention of potential complications, such as anemia, preterm labor and delivery, decubitus ulcers, and autonomic dysreflexia can be achieved with coordinated multidisciplinary management.

Finally, a chapter in the following book (Norwitz, ER, Repke, JT. "Obstetric Issues in Women with Neurologic Diseases" in Neurologic Disease in Women, Kaplan, PW (ed.), Demos Medical Publishing, Inc., New York, New York, 1998; pp. 122.) offers a brief discussion of pregnancy in patients with paraplegia due to spinal cord trauma, although there is no significant mention of TM. For women with paraplegia due to spinal cord trauma, they mention several things:

1) Urinary tract infections may complicate pregnancy. These are common in women without neurologic problems, but more so in those with spinal disorders. Antibiotic therapy to suppress urinary tract infections should be considered.

2) People with high thoracic or cervical spinal cord injury may have decreased pulmonary function. Because of the size and position of the developing fetus, the diaphragm may be displaced upward and lung volumes reduced. This causes discomfort in women with healthy neurologic systems; in women with paraparesis, it might cause inability to take in enough oxygen. Some women might even require respiratory support by a mechanical ventilator during the later stages of pregnancy. Because of this problem, pulmonary function tests should be performed on such women to assess respiratory status.

3) Most women with paraparesis can deliver vaginally. They note that women with complete cord transection above T10 segment (level of the navel) will have painless labor. However, often TM is incomplete or recovers partially so this is not reliable for patients with only partial sensory loss below T10. It is noted that women with significant sensory loss may not appreciate labor contraction pains and, therefore, those with significant sensory loss are recommended to have more frequent cervical checks after 28 weeks gestation to look for premature labor.

4) The chapter also talks about a condition called autonomic dysreflexia. This is a condition of uncontrolled discharges of the autonomic nervous system which is an uncommon but life-threatening problem in patients with traumatic spinal cord injury. I am not certain if this ever occurs in a person who has had inflammatory transverse myelitis. However, in a severe myelitis, it is conceivable. In this problem, the person develops severe headache, severe high blood pressure, reflex bradycardia, sweating, flushing, and occasionally problems with breathing or heart rhythm. It results from loss of brain (hypothalamic) control of spinal cord reflexes controlling the sympathetic nervous system functions (which control vegetative functions such as blood vessel size, bladder function and others). Stimulation such as an overdistended bladder or uterine contractions can cause autonomic dysreflexia. This chapter describes steps to reduce the risk of autonomic dysreflexia and to manage this complication.

It is important that you consult your neurologist and your obstetrician to discuss your specific case, particularly since there is very little research in the literature to guide a decision. Also, if you have a significant paraplegia you should consult an obstetrician who specializes in high-risk obstetrics.

My Life As "Mama Zoom"
Paula Lazzeri

I've heard people say that parenthood is one of the toughest jobs they ever took on. I can say, that's very true and, for many reasons, it's also one of the most rewarding. Life after TM can be very frustrating and challenging. I grew up in a family of seven siblings with strong, loving parents. What that did was convince me that I definitely wanted children someday.

I contracted TM at the age of 12, just two months into the 7th grade. At the onset I could not move my arms and legs and had trouble breathing. Twenty years later, I am still a C6-7 incomplete paraplegic with majority use of my arms and hands. My left hand is very numb yet it is stronger than my right. I have difficulty writing, using scissors, opening jars, working with small items (i.e., paper clips, typing, and keys). Thankfully, I can weight bear on my legs and am able to do pivot transfers from wheelchair to van, toilet, and couch. I cannot feel temperature and pain from my chest C6 level down but do feel that tingly sensation and have many spasms. After the onset of TM, my doctors noticed I had a slight curve to my spine (scoliosis). By my 3rd TM anniversary, the scoliosis had progressed so far that I only had an inch of space between my breast and backbone. Since there was danger to my heart, the decision was made to fully fuse my spine using metal compression rods.

After being married for six years, my husband and I started thinking about having a baby. We went to a high-risk OB doctor to be evaluated. My primary issues about getting pregnant were would carrying a baby full term effect my spinal fusion; would my baby be at any higher risk to get TM; with the paralysis, would I know I was in labor; with weak abdominal muscles, how would I deliver a baby; and would I have trouble breathing since I already struggled with less than the normal lung capacity? We discussed each of these topics after a full physical. She was able to answer most of my questions. My spine was very strong ten years after the fusion, and I could expect nothing to happen to my back. There were no studies on TM and pregnancy so as to whether Jesse would be at any higher risk was not answered. For that matter, there were no studies, "period," on anything having to do with TM, so we had to proceed blindly with this. The weak abdominal muscles were fine, because your body takes over and medical staff are able to help push if needed. She did find that premature labor is common in paraplegics. So, I saw my OB more frequently than other women and was monitored very closely near the end of my pregnancy. As far as the breathing, that would most likely be a problem, but it was a "wait and see" kind of thing. Most women, at some point late in their pregnancy, have trouble catching a deep breath. We received the green light to get pregnant.

It didn't take long and I was back in her office a few months later. I quickly discovered that certain aspects of this pregnancy would be perfectly normal. The first four months I spent doing taxes in the restroom at work (I am a tax accountant), while I experienced the thing called "morning sickness". My body underwent the normal amount of abdominal swelling and I soon found myself with the equivalent of a basketball in my lap.

There were some things that were uncertain and gave us some concern. Myk completely worried about the delivery, especially when we found out there was no way I could have an epidural. We feared I would have premature labor and be rushed in for an emergency C-section. Because I suffered from frequent urinary tract infections (UTI), my doctor put me on antibiotics and prenatal vitamins, along with my normal doses of baclofen and ditropan. Since there were no studies on the effects of these drugs on women during pregnancy, we had no concrete evidence on which to base which and how much I should take. I took baclofen, ditropan, antibiotic (to prevent bladder infection) and prenatal vitamins throughout my pregnancy. When deciding whether to take the baclofen and ditropan, my OB did go to her risk database. The only information she found was that it did cause some complications (which ones I cannot recall) in rats (no human studies were available) at a very high dose. Knowing I was not on high doses, that the study had only been done on rats, and that the symptoms I experience without the medications were unbearable, the decision was made to continue taking them. My history of bladder infections was also quite large so she did not want to risk me getting an infection; she put me on antibiotics. When we weighed the alternatives, it was clear the spasms and symptoms without the meds would be far worse than any side effect that might appear with the meds.

As a C6-7 quad, I have only 75% of the lung capacity of a normal person. So, near the end of my term I developed some serious breathing problems. When I saw my doctor, she made some final decisions that were important for the baby's and my welfare. Because of the trouble breathing properly and because premature labor is common in paraplegics, we decided that she would do a C-section at least three weeks early, using a general anesthetic. In order to avoid autonomic dysreflexia, a condition adversely affecting one's blood pressure, the usual procedure is an epidural anesthetic, but because I have a complete spinal fusion, this was impossible.

The doctor discovered how much she had underestimated the strength of my spasms when she tried to do an amniocentesis and the spasms kept pushing the needle back out as quickly as they inserted it. For the same reason, they were forced to use a blood pressure cuff instead of the IV generally used to monitor. The delivery, at that point, went as planned and our baby boy was born sleepy but completely normal and healthy. One week after the C-section, the suture came loose, again because of the spasms, and the doctor restored the incision successfully using a metallic thread.

I did not worry much, until afterwards, how I was actually going to get around with Jesse. I did not think much about how I was going to hold him and push my chair, get him in and out of the crib, in and out of the car, and generally have the energy to take care of Jesse and myself. Myk and I did not talk much about the after care until Jesse was born. I just did not realize how difficult caring for an infant was going to be. It was very tough until he was able to walk!! Myk, being the wonderful, patient and understanding person he is, just filled in where needed. You have to realize you need help and have to ask for it. I was not used to asking for help. I did not take Jesse outside my home without Myk or someone else to help until he was more self-sufficient (walking and talking and able to take direction from me). Being able to walk with a child in your arms is a gift and one that I have never experienced. Jesse grew to know what kind of comforts I could give him and does not expect anymore. He knows no different.

Keep in mind that, while most mothers develop special abilities once baby arrives, the physically challenged mother needs to develop the dexterity of an octopus. Once I was healed and able to take on some of the responsibility of being a mother, I had to devise original means of accomplishing that feat. Obviously, I couldn't carry Jesse and push my chair at the same time; I used a pillow crosswise on my lap, and balanced him diagonally on it, facing me, with his feet tucked under the armrest of my wheelchair. Some things my husband, Myk, had to do, such as lifting Jesse in and out of the bathtub, crib or car. For the first couple years, I didn't go out alone with Jesse. I needed help getting him to and from and in and out of the car, buildings, and elevators and pushing a grocery cart around the store. Myk was most always there, but when he couldn't be, someone from our family helped.

Jesse will be seven years old in three months and is in the first grade. When we look back at those first six years, we can honestly say they were hard, at times frustrating and exhausting, but they have been the most fulfilling. This will be the third year in a row I have gone to Jesse's class to share with the children about who his mama is and all about being in a wheelchair. It wasn't until recently that we realized Jesse had given little thought to the fact that I am in this chair, when he asked me where all the other mama's wheelchairs were. He's very proud of his mom and loves it when I come to his class. In turn, Myk and I are extremely proud of our son, especially when we see how easily he interacts with anyone who is different in any way. He is a constant reminder of what a good decision we made seven years ago.