“I’m putting you in the hospital,” Dr. John Elliott said as he walked into the examining room that September afternoon.
I was 22 weeks pregnant and I knew that I was experiencing preterm labor. I had been there before. My last pregnancy had been complicated by early contractions that were fairly easily controlled by oral medication and bedrest at home. I had chosen Dr. Elliott and the other physicians at Phoenix Perinatal Associates to manage this pregnancy because the group specializes in high-risk obstetrics.
2015 update: Dr. Elliott now practices with Valley Perinatal Associates. Find additional updates at the end of the story.
OK, I thought. I’ll go home. pack a bag, arrange for babysitters and say goodbye to Phillip (our then 2½-year-old son).
“Do you want me to come back tonight or should I just check in tomorrow morning?” I asked innocently.
“Now. I want you to check in now,” Dr. Elliott said.
“No! I can’t go now! I have to go home to say goodbye to Phillip. He won’t understand why Mommy didn’t say goodbye. He starts his first day of preschool next week. I have to be there! I have to go home first!” I sobbed. “I can’t do this now.”
Dr. Elliott’s reply sobered me.
“Debbie, you are the mother of two now. You have to think not just about Phillip but also about the baby you are carrying. Your problem is even more serious than I had thought. Your uterus is bulging, your cervix is soft and short and the baby is low. Putting those conditions together with the fact that you’re having contractions every three to four minutes scares me. We have to take action now. The only choice I have to make right now is whether to put you in a wheelchair to send you to the hospital or let you walk in on your own.”
“Please. Not a wheelchair,” I begged. “Please let me walk in.”
Reality was beginning to hit. Things were happening too fast. Declining a wheelchair preserved for me the illusion that I could still exert some small degree of control over my body and the drama that was unfolding.
Just the day before, I had started using a TermGuard* uterine contraction monitor at home. Because of my history of complicated pregnancies. Dr. Marlin Mills*—another partner at the high-risk obstetrics group—had instructed me to begin the monitoring at 22 weeks to establish a baseline (or “normal”) reading. A few contractions per hour would have been acceptable. I was having 17. No wonder Dr. Elliott had called me in for a pelvic exam.
Until then, I’d had a pleasant summer, sharing time with Phillip and friends. During the first weeks of my pregnancy. I felt good. I believed this pregnancy would be no different than my one with Phillip. That time, I was put to bed at 29 weeks and hospitalized for one week. I was regulated by oral medication, used the contraction monitor easily and carried the pregnancy to 39½ weeks.
This time, when I began experiencing contractions as early as the second or third month, my doctors and I figured it was “normal” for me. We weren’t really worried because we’d had great results before. I calculated that I would be put to bed in October. This would give me time to get Phillip adjusted to his first preschool experience, settled into his new big-boy bed, possibly tackle toilet training and interview candidates for house and child care-assistance. Practically and emotionally, I was gearing myself on this time schedule. But all of my careful planning didn’t prevent me from being abruptly pulled out of my home that first week in September 1989.
My husband and I went spiraling into shock when we were suddenly threatened with the very real possibility—probability—of losing Risa (we’d already picked a name). We had convinced ourselves that we had this pregnancy under control and Dr. Elliott’s somber declaration to the contrary hit me like a physical blow. Dan caught me as I crumbled to the floor in tears.
Twenty minutes after walking out of Dr. Elliott’s office I was admitted to the labor/delivery unit at Good Samaritan Hospital* to be treated intravenously with magnesium sulfate, a medication that stops uterine contractions. Since I had been too upset to eat anything earlier in the day, I had persuaded the nurse to let me eat before hooking me up to the “mag.” I knew, from my experience with Phillip, how wretched I soon would feel. The dizziness, nausea, blurred vision, disorientation and lack of muscle coordination caused by the mag make you feel so bad you become afraid that you won’t die. And you can’t just sleep through it. The IV tube in your arm and the contraction monitor around your belly prevent free movement. And because the treatment seriously affects heart rate and blood pressure, nurses are constantly interrupting to take vital signs, regulate fluid intake and measure fluid output.
I was also trendelenburged—positioned with my hips higher than my shoulders—which enables gravity to take pressure off the cervix. My doctors hoped this would help my baby disengage from the pelvis and move back into a free-floating position higher up in my uterus. Within the hour, a nurse from Tokos*—a nursing practice specializing in high-risk pregnancy management—visited to provide me with an instruction book and the subcutaneous infusion pump that would administer terbutaline , another medication that calms the uterus. She explained how I would inject myself and use the small computer box attached to my leg by a thin tube.
“I don’t do computers and I don’t do needles,” I quipped, in a feeble attempt to remain calm. I couldn’t believe this was happening.
I knew I had to overcome my squeamishness about injecting myself (the most unnatural act imaginable) and my fear that I would screw up the computer and cause it to administer my medication at an improper rate—which I feared would endanger both me and the baby. I was also terrified that I would attach the syringe improperly
and die of an air embolism.
I was scared. Scared that I’d lose the baby (at 22 weeks, there was virtually no hope of saving her if I delivered). Scared that I wouldn’t be up to the task ahead of me. I’d always prided myself on being the kind of person who could rise to any occasion, but this was too much to handle. I knew that, no matter what the doctors and nurses did, ultimately it was my job to carry the baby as far along as possible.
And Phillip. I missed being home with my happy little boy. Unbeknownst to me, one of my doctors shared with my husband his belief that it would take a miracle for me to carry the baby to even 28 weeks (six weeks away!) because the baby’s head was engaged at station zero—imminently poised to deliver. My husband and doctor kept this piece of information from me. They correctly assessed that I needed to feel there was hope so I would comply with medical orders and remain calm. That night, my husband took home with him the secret of how much danger our baby was really in.
As I lay upside down in the hospital bed that night, attached to intravenous tubes and monitors, I knew that I had to get my act together. There was no time for a pity party. I had to learn how to use the terbutaline pump. With my mind cloudy and my eyes blurry from the mag, I read the instruction book and practiced handling the computer box and injection apparatus.
The next morning, the nurse and my husband were pleasantly surprised to find that I’d begun dealing with the new equipment. The rest of the day was a blurry and sick-feeling state of limbo as my body allowed the magnesium sulfate to calm the contractions.
The following morning, my Tokos nurse arrived for my first injection. I thought that I would be asked to practice by piercing an orange (I had heard stories of medical students beginning this way) and that she would actually perform the first injection. Wrong! Anita handed me the equipment and said, “Here you go.”
I sat for several minutes with the needle poised over my leg, my hand immobile with fear and disgust at what I had to do. And then I just did it. I mean I did it! My hand was shaking but I completed the injection and set the controls on the computer box. Moments later, my husband walked in. We were both so proud of me.
Dan and I were totally panicked. We knew that we could be only moments away from losing our baby. And as much as we wanted focus all of our energies on saving the baby we had not yet met, we still had a child at home. We had promised Phillip that some day we would bring “his” baby home from the hospital. How could I come home without a baby?
We did not tell him that I was in the hospital. Until we knew anything for certain, we did not want Phillip to see Mommy hooked up to the intravenous machines and other apparatus. I’m not sure where he thought I was. but I called him at least once a day and every time Dan returned home from visiting me he brought Phillip a gift and told him it was from Mommy.
I was tom apart by the separation from Phillip. He was my baby and, in just a few days, he was starting school for the first time. His life was changing and his Mommy should have been there.
To top it off, Dan couldn’t be there either. He was expected to out of town for the entire next week to attend an important series business meetings that could not be rescheduled. Dan owns his business and our livelihood depended on income that would generated at those meetings. Dan had to go.
I needed to know that Phillip’s life would not change—that he would make a smooth adjustment to school and to my abrupt absence. There was only one person I could trust to take charge of the next few days and make the same decisions I would make.
We called my mother. Forty-eight hours later she arrived by plane from Philadelphia. When she walked into my hospital room carrying a balloon and trying to look happy, I saw reflected in her eyes how sad the situation appeared. My eyes were sunken. My skin was green. I had just thrown up from the magnesium sulfate buildup in my system. I had recently performed my first terbutaline injection and the tube was attached to my leg. The mag IV was in my arm and the contraction monitor was strapped across my abdomen. My mother later told me that seeing me like that was one of the most upsetting moments she ever had experienced as a mother.
My mother is a great administrator. Immediately she assumed the role of family organizer. I rambled and she took copious notes about what needed to be accomplished to get Phillip set up for his first day of school (lunch box, art smock, change of clothes, drop-off/pick-up procedures, etc.). She moved into our house, surveyed what needed to be done and did it all.
Dan left town while I was in the hospital, but Phillip’s daily routine didn’t miss a beat. He was excited to have his “Bubby” visit and she kept him so busy he didn’t have time to miss his parents. The morning of my fifth day in the hospital, Bubby and boy walked to school together. My mother explained the situation to Phillip’s teacher, said a tearful goodbye and left Phillip in his classroom. Later that day, she visited me. She handed me a photograph of Phillip standing outside school, wearing a crooked smile and clutching his new lunch box. My heart swelled.
That afternoon I took a real nap. I knew we’d made the right choice in bringing my mother out to Phoenix. Sometimes a girl just needs her mom.
My hospital stay lasted one week. By the time I arrived home, my mother had provided a rental hospital bed and sliding side table, new linens and a new reading lamp. The transition home was stressful, but my Tokos nurse had told me to expect my contractions to go through the roof, and they did. Within a day, though , I was back to my “normal”—an acceptable three to six contractions per hour.
Once I was settled, my mother set up interviews to find someone who could provide assistance while I was “incarcerated” in bed 24 hours a day. If all I’d needed was skilled nursing care, the task would have been simple. But I didn’t need that. The infusion pump and monitor were designed for my independent use and I successfully used them. What we really needed was a homemaker—someone to live with us and run the household during my suspended animation and Dan’s frequent absences. We needed someone who would handle shopping and meal preparation, keep up with light house work and laundry, run errands and tend to Phillip’s daily needs and transportation to and from school. Most of all, we needed someone who was energetic and cheerful and who enjoyed playing with a 2½-year-old. I needed either Mary Poppins or a clone of me.
The closer it came to the time my mother needed to leave, the more desperate we were to find the right person . Finally, in response to an ad, my mother introduced me to Peggy, an energetic 19-year-old with enough savvy to take charge of Phillip and the household duties. My mother returned to Philadelphia .
The long haul
Bedrest for me meant total restriction of activities. With the exception of bathroom privileges and a shower every three days, I laid flat on my left side in bed. Forget shaving my legs—bending over gave me contractions. But I looked forward to showers and used them to take a break from the pump.
I ate my meals in the hospital bed propped to only a 45-degree angle. At night, I’d move back into my own bed, which had been raised at the foot with two-by-four blocks of wood to keep my body in the trendelenburg position—the absolute worst position for the heartburn and sinus pressure experienced during even a normal pregnancy!
My days were long and boring, underlined by fear and discomfort. My contractions were not painful, but they were tiring. For one hour each morning and evening I strapped on the contraction monitor and then phoned in my recording through a modem. The Tokos nurse would let me know what uterine activity she observed . I used this information as a barometer to plan my day. If I had one to two contractions per hour I would encourage a friend to visit or prop myself to a 25-degree angle to read for a short while. If my strip was heavy, I cancelled plans and laid flat—sometimes doing some self-hypnosis or deep relaxation exercises to try to calm my body. Sometimes it worked ; sometimes it didn’t.
Much as I disliked monitoring, often the high point of my day was the phone call to the Tokos nurses. Our daily conversations and weekly home visits were sometimes my only contact with the “outside.” They supported me, understood my fears and applauded my efforts. I also felt that they trusted my judgment. During a time when I had such a strong sense of being out of control, that trust made me feel less helpless.
During my 10½ weeks of preterm labor with Phillip. I had usually been able to detect my contractions and had been able to allow myself the luxury of eating meals at the kitchen table and switching to the couch in the family room for a change in scenery. If I felt more contractions, I would go back to bed and they’d abate.
This time around wasn’t so simple. I couldn’t detect all of my contractions, which meant that, even if I felt okay, I might still be contracting. And lying down did not always make the contractions go away. Sometimes I’d strap on the monitor and take a nap, only to learn upon waking that I had had a dozen contractions. This time there was no escape, not even in sleep.
Another difference between the two pregnancies was that the first time we were more idealistic and Phillip was in critical danger for a shorter period of time. It was scarier this time because I knew how it felt to be a mother and to hold a child of mine in my arms. To contemplate what it would feel like to lose a baby was a gut-wrenching horror I couldn’t help imagining. Try as I might to block that feeling from my heart and mind, it never really went away.
In lighter moments, I’d joke that I wore my emotions on my uterus. Any change of emotion—positive or negative—could cause contractions. Even a good laugh would do it. I gradually found a way to shut off thoughts and feelings and just drift through the day.
My sleep patterns were altered by the terbutaline. While the medication calms uterine muscles, it causes your heart speed up. My pulse rate was a steady 114 to 117 beats per minute (normal is 80 beats per minute). My body always felt like it was racing somewhere. Even on a calm day, I felt jittery and there was nothing I could could do about it. I would be sleepy but unable to nap. I would be awake at night too—and not just because of my pounding heart. There was the ever-present fear that I would roll over onto my pump and shut off the flow of medication. Without the constant flow terbutaline, I risked going into full-blown premature labor.
Some days, for no apparent reason, I would experience excessive contractions. Any number over six meant that I had to bolus (program the pump to inject more terbutaline) and re-monitor to see if the added medication would bring the number down to an acceptable level. On many occasions, I would re-bolus and re-monitor for the entire day. Lying still in one position for hours at a time made me uncomfortably stiff and crampy. But if the protocol didn’t calm my uterus, I would have to be rushed to the hospital.
Dan, Peggy and I had established an emergency plan consisting of a list of people to be called to stay with Phillip if someone had to drive me to the hospital. Dan’s office would be alerted so that they could arrange for him to fly home from a client meeting out of town. On several occasions Dan sat in an airport for hours, not knowing whether come home or to continue his business trip.
These days were especially trying. He’d ask me what he should do and I didn’t know what to tell him. I didn’t want to go to the hospital without my husband—my advocate, my protector, my partner. But I also knew that if Dan did not travel to meet with his clients we would be financially burdened. We both had our jobs to do.
The adjustment to being an “invalid ” was a difficult hurdle. It was frustrating not being able to participate in the world around me. Independence was replaced by dependence. When you ‘re used to doing everything for everybody, it’s hard to get used to doing nothing for anybody and having everybody doing everything for you. I felt like I was imposing on everyone.
I’m a very organized person and it was hard to give up control of my household , even though Peggy did a fantastic job. It was also a bit ego-deflating knowing that I was partially replaceable to my family. It was weird watching Peggy live my life. But it was also eye-opening to observe the amount opportunity to validate that important part of my life.
I wasn’t the only one to suffer emotional upheaval as a result of having a high-risk pregnancy. Both Dan and I still get chills when we remind each other that five years ago the technology that saved both Phillip and Risa didn’t exist.
Despite our doctors’ assurances, Dan and I felt guilty that we hadn’t been cautious enough with this pregnancy. Had our casual attitude early in the pregnancy unknowingly jeopardized her life? Had I been too active one time too many? Should we have intervened earlier? Rationally , the answer to those questions was “no.” Even our doctors hadn’t been able to predict the advanced stage of preterm labor that developed. But guilt sometimes takes on a life of its own.
We couldn’t undo our previous attitudes or actions but we could react differently for the rest of the pregnancy. Neither of us ever wanted to be in the guilt-ridden position of being accused by the other of not doing enough to save the baby. My way to do this was to become a perfect patient. Dan’s way was to attempt to assert contr over my every action to ensure my complete compliance with the prescribed protocol.
Even in this enlightened decade, our culture still places the expectation on men to be good providers and protectors for their families. A husband can’t help but feel inadequate when faced with the challenge of high-risk pregnancy. I understood that it was Dan’s sense of being helpless and out control that caused him to assert himself. Nevertheless, I am not accustomed to having my every move monitored. I bristled at Dan’s intervention.
A sound marriage depends on frequent and honest communication. During the critical four months, we were unable to really be open with each other. On the rare occasions when we would attempt to air some controversial issue, my contractions would accelerate and we’d both feel guilty about introducing additional stress. Feelings became buried. We weren’t able discuss the private hells that we’d gone through until several months after Risa’s birth. I remember that first discussion as the beginning of a time of healing for our marriage and for me.
Phillip helped me find strength during the months I was confined to bed. He wasn’t repulsed by or afraid of the “special medicine taped on Mommy’s leg.” He was fascinated by the beeps that sounded from the computer box when I made adjustments. He knew that Mommy was in bed because “doctor said so” and I didn’t stress the conection between my being in bed and the new baby unless it was absolutely necessary.
Phillip created games for us to play. With a quilt thrown over our heads, my bed was transformed into a spaceship. Sometimes Phillip brought small cars and trucks into bed. Stacks of pillows became mountains or tunnels. The hospital bed became his fishing boat. We both really looked forward to these times together.
My Tokos nurse visited weekly to bring syringes and other medical supplies and assess my medical status. Phillip was intrigued by the medical tests and we found ways for him to participate. He listened to my heartbeat—and his—through the stethoscope. He listened to “his” baby’s heartbeat on the doppler and it was his job to wipe the ultrasonic “goop” off my belly. He would bring me the cup for “Mommy to pee into” and would help the nurse dip the paper strip and watch it change colors. He listened for the beep on the digital thermometer, removed it from my mouth and gave it to the nurse. Then we’d both weigh ourselves.
Phillip’s difficulty with the crisis really didn’t surface until about six weeks after Risa was born. By that time, my parents had returned to Philadelphia, Peggy had departed our household to attend to personal matters and Dan had resumed his hectic business schedule. Suddenly, I had to resume the parental role of disciplinarian, when for four months I had been a friend and, albeit sedentary, playmate for him. It was a rude awakening and Phillip really tested me.
There were days when it seemed that all Phillip did was scream. And Risa screamed. And I cried. After a few weeks of this, I extended Phillip’s preschool attendance from three to five mornings. He enjoyed it and the break gave me a chance to spend private time with Risa. I was also able to catch a quick morning nap if Risa was accommodating.
Once Risa could be left with a babysitter, Phillip and I were able to share some private time outside the house. The first time, we went to the puppet theater. At the end of the show, children were invited backstage. Phillip came out from behind the curtain galloping astride a horse stick. My emotions over flowed. This happy, confident little boy had been frightened of clowns and loud noises less than a year earlier. I’d missed the transition from toddler to little boy and was so proud of how “grown up” he was. I cried sad and happy tears at the same time.
How others reacted
Crisis often challenges the altruistic instincts in people. My long-distance family was there for me. Brief letters and phone calls from relatives were pick-me-ups. Some of my husband’s employees and clients sent flowers and cards. My rabbi called every few weeks to offer encouragement and suggest new titles of books on tape (it’s hard to read comfortably while lying flat on your left side). Phillip’s teachers called periodically to keep in touch about his progress and even sent home a videotape of a day at school.
The reactions of local friends surprised me. Some friends I expected to visit and/or call didn’t, even when I directly asked for their support. My disappointment at being abandoned during a time of crisis was very deep. I’ve since learned that this is not an uncommon experience. Crisis makes some people uncomfortable. When discussing this with other high-risk mothers, we try to console each other by recognizing that ignorance and personal reasons may explain (but not excuse) a friend’s unexpected detachment.
On the other hand, women with whom I’d been friends for only a short time really came through for me with phone calls and visits. Sometimes they would bring their children to play with Phillip and I was able to observe his happy interaction. On some occasions, my friends came as a group; that was great because I didn’t have to “entertain.”
Others rallied as well. An orthopedic friend of the family took time out of his busy day to treat a painful tendonitis I’d developed in my left shoulder (from the stress of my body weight while in the trendelenburg position). A good friend who is a medical technician came on several occasions to draw blood to test a thyroid imbalance that complicated my already high-risk pregnancy. My hair dresser and manicurist both made house calls after I’d passed the critical 32nd week. The logistics were a bit complicated because I still was not able to sit upright, but we managed.
Milestones and double edges
A double-edged supportive message I would frequently hear from well-meaning friends and acquaintances was, “I admire you so much. I could never do what you are doing. You’re so incredible.”
Who doesn’t like a compliment? It felt good to know that some people had a vague sense of what my experience was about but sometimes I wanted to reply, “Yes, you could do this. I’m not doing anything that any other mother trying to save her baby wouldn’t do. I’m not a hero. I don’t want to be a martyr. I don’t even want to be doing this. I hate what I’m going through. I hate the tedium. I hate the unending fear. I hate the uncertainty. I hate being a burden to those I love. I hate the physical discomfort. And I hate this intrusion in my life. But I have no choice. If I don’t do this, my baby will die.”
At times, I did allow myself to feel proud of what I was accomplishing. Every minute that I chose to lay still was a gift to Risa. Every additional minute she spent growing inside of me would mean a better chance of survival outside of me. I knew that what I was doing was special and found strength in that. But I also, at times, was depressed and angry that I had to go through it.
Reaching important milestones in terms of weeks of gestation and fetal development created another double edge. Twenty-eight weeks brought the release of knowing that if I delivered the baby, she could probably be kept alive. But what kind of life would she have? What catastrophic impairment would she suffer? What decisions would we have to make concerning resuscitative or reparative measures? The nightmare that we might be called upon to make life, death and quality of life decisions drained me.
Dan and I became educated about the impact a birth at progressive stages of prematurity has over the course of a person’s lifetime. When a baby is born without a matured heart, brain, lungs, digestive system, reflexes or neurological system, its life experience is usually not normal. Painful and risky surgeries, followed by all kinds of physical therapy, begin the list. Neurological and emotional impairment may never be restored. It was so hard to think of a child of ours suffering unnecessarily. We also considered the terrible marital and financial burdens that accompany tragedies such as these, and we thought about how this scenario would affect Phillip’s life.
The idea that we might be faced with a decision to let Risa go or to prolong a life of suffering caused me the most emotional pain in this entire experience. I was too afraid to love her because I might lose her. At the same time, I had to be committed enough to “buy into” the program that could save her life.
Thirty-two weeks brought the joy that we’d probably passed the worst danger for the baby. But that joy was deflated by the knowledge that I still had eight weeks left before the baby would be completely matured. Soon after the 34th week, I began to have what seemed like uncontrollable contractions. Almost every day brought extra doses of medication, hours of monitoring strips and frantic calls to my husband to be ready to come home from a business trip. I was tired of the whole thing. I wanted to give up the fight. I wanted it to be over.
I knew that 34 weeks is widely recognized to be the early threshold for lung maturity for many babies and I felt that I had done a good enough job. But the doctors, nurses and my husband implored me to hold on for just a few more weeks. I’d come so far, it would be a shame to give up now and waste all my efforts. I knew they were right.
Somehow, I found the strength to go on. It was probably my doctor’s threat to put me back in the hospital to do a “mag washout” (a repeat of the intravenous magnesium sulfate that I had endured at 22 weeks).
I also remembered a quote from The Premature Baby Book, by Helen Harrison. Regardless of how slight a percent chance exists of a serious physical impairment befalling a premature baby, “No matter what the statistics, when it happens to your baby, it’s 100 percent.” That was all I needed to go on.
By 35 to 36 weeks, I began to count down the number of times I’d have to inject myself in each leg. The infusion site could be left in for up to 72 hours, and, with good planning, I was able to contemplate poking myself only a few more times.
Finally the day came when I reached 37 weeks. The nurse came for her last visit. She took away the pump and its accessories. She took away the monitor. I was allowed out of bed. I ate dinner at the kitchen table with my family. I straightened my own bed. I even went to Phillip’s school to celebrate his third birthday. And I walked everywhere until I couldn’t move from muscle pain and fatigue. I hadn’t realized how much my muscles had weakened while I was in bed; they just couldn’t support the extra pounds I’d put on. My doctor advised me to go back to bed and to save what little strength I had for labor and delivery. I did as he suggested, but I also allowed myself to walk around for some time each day. I was determined to use gravity to escalate my contractions and hopefully speed up the end of this pregnancy.
My mother came back to Phoenix to be here for the birth of her grandchild. She took me out to lunch and I insisted on sitting in upholstered chairs in the middle of a fancy restaurant—a sure way to get my water to break, I predicted. No such luck.
Delivery and adjustment
At 38½ weeks, I went into real labor. People frequently ask me how I knew it was the real thing. Believe me, there was no mistaking it! Preterm labor contractions are usually painless. On days when I’d have a lot (sometimes three to five minutes apart), I’d be exhausted and uncomfortable, but they weren’t the kind of contractions that you have to “breathe through.” When the real thing began, I knew the difference.
Once at the hospital, my labor and delivery were blessedly fast—15 minutes and three pushes.
The moment after I gave birth to Risa, I cried out, “Give me my baby! I want my baby!” She was so beautiful and pink and round and I was reassured that she had all the regulation parts. She nursed right there in the labor/delivery room while we made jubilant phone calls to grandparents and others.
Then a very strange thing happened. I didn’t bond with my baby. Maybe it was because I’d spent so many months detaching myself from her, afraid that she would be born too early and die or suffer horrible damage. Maybe I’d too successfully numbed myself so that I could get through four months of grueling medical procedures and sleepless nights. Maybe it was the unending stress of being prepared to make life, death and quality-of-life decisions. Maybe the guilt that came with resenting what I was going through became confused with feelings about my unborn baby. Maybe I had just given her all I had for so long that I didn’t have anything left to give.
Maybe it was all of those reasons. I felt my job was done. I’d worked hard and given birth to a healthy baby, but I was too tired and too physically weak to give her the love and attention that babies need. My muscles—legs, back, arms—had atrophied from lack of use, so it was physically painful for me to hold her and walk her for the hours that she cried with colic. And I just didn’t want to be touched. Even though I had spent many solitary hours in bed, I had never really been alone. The pump was always stuck into my leg and the monitor was strapped across my protruding belly for hours at a time. Both machines were constant reminders of how fragile Risa’s life was. I just wanted to be free of all encumbrances.
I needed a break from the continuing cycle of fear, anger and guilt. I wanted to be left alone to get back in touch with myself as a normal, healthy, fully functioning adult. I didn’t want to be needed so desperately any more. But Risa was a jittery baby who needed the comfort of being held almost constantly during her early months.
Because I physically could not care for Risa’s excessive need for physical comforting, I often placed her in the arms of babysitters and guests. When she needed to be fed, I nursed her and then returned her to surrogate loving arms. Even though I was depressed and unable to share the closeness I longed to have with her, I never let Risa be neglected. I made sure there was always someone there to hold her. I figured it was just a matter of time until I became myself again.
I was determined to nurse Risa. Nursing Phillip for nine months had been a peak experience in my life and, in large measure, contributed to the close bond between us. I wanted to feel the same closeness with Risa, but Risa was a different baby. Nursing sessions were stressful. She’d nurse vigorously, leaving me sore and empty, then fall asleep, wake up hungry and begin again. Sometimes she just wanted to suck, but she wouldn’t take a pacifier. When we tried supplemental bottles after a few weeks, she threw up the formula. Rather than pulling us together, nursing exacerbated my feelings of detachment. And I was still a prisoner in my own house. When I would try to take Risa out, riding in the car caused her to scream and cry so intensely she would gag and vomit. I resented this baby for continuing to demand more than I had to give.
Weren’t the previous nine months enough? Would I ever get out of this house?
A very wise and wonderful friend finally asked me if I was afraid that weaning Risa would end whatever mother/daughter contact I had with her. My answer was yes. The catch-22 was that the longer I nursed, the less likely I was to feel good about her and our relationship.
At five months, Risa started on solid foods and by six months she was weaned onto bottles. Our healing process began. It took another three months (coincidentally, the one-year anniversary of the time I was hospitalized) before I could say that Risa was not just work but actually a lot of fun.
I’m thankful now that Risa is as strong willed as she is. She never gave up on me even when I had very little to give her.
People expect you to feel elated and grateful after a high-risk baby is born. But sometimes having the baby isn’t enough.
Unless they’ve been on a similar roller coaster ride of emotions, it’s hard for most people to understand that the grateful feelings get mixed up with residual fear, guilt and grief. You are not just scared one day and happy the next. It takes awhile to sort out the confusion and make sense of what you have been through.
In my case, I entered a lengthy postpartum depression—something most women don’t freely acknowledge or discuss. It’s embarrassing. You think to yourself, “Other people have babies and don’t get depressed.” You don’t really trust your own instincts. It’s like admitting that you’re not Mother Teresa. And, while you’re going through it, you don’t really give it a name.
After about four months, I realized I wasn’t getting any happier or closer to Risa. The more people said to me, “Oh, you must be so happy,” the more depressed I became. I felt like a terrible mother because I couldn’t feel the happiness I was expected to feel. All I wanted was to sleep and be left alone. I wanted to get back to the normal flow of life but insecurity and self-doubt held me back. I’d been isolated in my bedroom and had lost the confidence to move freely in the fast-paced outside world. Even riding in a car was a heady experience. Five miles per hour felt like 50. I wasn’t accustomed to movement. Aside from all that, my mind was a fog.
I hadn’t gotten much rest before Risa was born, and still wasn’t getting sleep in segments longer than two to three hours. My hormones were still screwy (nursing actually prolongs the imbalance) and my thyroid (another emotional regulator) was still readjusting to a non-pregnant state. I was a mess and needed a jump start.
Even with my own professional training as a social worker, I couldn’t pull it all together alone. A friend referred me to a psychologist who helped equip me with tools to pull myself out of the depression. I began to let myself face the fears I had had about losing Risa or giving birth to a vegetable. In an atmosphere of unconditional acceptance, I was able to say out loud thoughts that I had not even dared to share with my husband during our time of crisis.
Slowly, I began to come to grips with the losses I had experienced as a result of my complicated pregnancy. I missed feeling good about myself and still felt repulsed by the mental image of injecting myself in my leg. I learned to acknowledge that I was actually grieving the loss of normalcy of my life and pregnancy , the loss of not being able to participate in Phillip’s exploration of the world outside our home, the loss of intimacy—both emotional and physical—with my husband, the loss of friendships, the loss of joyful anticipation during my pregnancy and the loss of attachment to my baby. And I grieved for the children I’ll never have. Dan and I have decided we can’t risk subjecting our family to this again.
Other events helped put my experience into perspective. I learned about post-traumatic stress disorder from an acquaintance. Any time people are placed in life-or-death situations, they experience a traumatic stress that shakes their very foundation. My baby came close to death while she was still inside my body. A piece of me would have died with her. I was still dealing with that.
During most of the four months I was in bed, I kept up a good front. “I can do this. This thing won’t beat me.” Fear was always lurking but I put my emotions on hold and consciously placed myself second for the good of the greater goal. I remember being given the phone number of a high-risk pregnancy support group that was just beginning and choosing not to call. I didn’t need help coping. After all, I rationalized, I was a trained social worker and knew all about human dynamics. I could handle this on my own.
I made the wrong choice. And my strategy backfired because it all hit later, after Risa was born. Maybe, if I had known what to expect emotionally at each stage, I would have been better prepared to cope. When I recently met with Laura Maurer, founder of The Confinement Connection* support group, I mentioned, hesitantly, that I felt weird because I was still dealing with the experience a full year later. She looked at me knowingly and said, “But it’s only a year. Don’t expect to resolve it all so fast.” And she was right.
The road back to normalcy has been paved with many different healing milestones. Extending Phillip’s school attendance, giving up nursing, talking with Dan about our individual pain, seeking professional counseling, learning about post traumatic stress disorder, talking with Laura Maurer of the Confinement Connection, and, finally, writing this article.
On the one-year anniversary of my admittance to the hospital at 22 weeks gestation, I began to feel a momentum out of the quagmire I had been in. Time is a wonderful friend. From a distance, I allowed myself to start a countdown to Dec. 23, Risa’s birthday. It was with joy on that day that we celebrated with picture taking, singing and gift giving. Phillip and I together made a cake for the occasion. The date may have commemorated Risa turning 1, but it was as though my relationship with her was just born.
I have a daughter now, a pal, a companion. We hug, we dance, we play, we do errands together. We missed a year and are making up for it now. It’s been a slow process. This entire experience has taken its toll on me personally, on my marriage, on my relationship with my son and daughter. And it’s not something any of us would choose to repeat. But when I see my two children roll on the floor in an affectionate hug, or hear peals of laughter as they create some silly game together, I know it is all worth it. And the healing process continues.
EDITOR’S NOTE: When Debbie Wohl lsard passed the second anniversary of her hospitalization for high-risk pregnancy she became a peer counselor for other women undergoing similar experiences.
Additional updates as of Feb. 15, 2015
We could find no reference to a uterine monitoring device under the brand name TermGuard, which was originally created for the Tokos high-risk pregnancy nursing service. Home Uterine Activity Monitoring (HUAM) involves wrapping a belt around your waist and attaching it to a machine called a tocodynamometer.
Dr. Marlin Mills is now in practice with Obstetrix Medical Group of Southern California.
Good Samaritan Hospital is now Banner Good Samaritan Hospital and Medical Center.
Tokos, a nursing practice specializing in high-risk pregnancy, no longer exists. The organization merged with rival Healthdyne in 1996.
Confinement Connection was founded by Valley volunteer Laura Maurer, another mom who experienced high-risk pregnancy. Maurer later became a nurse and went on to help found California-based Sidelines National Support Network, now an international online resource providing support to women and their families who are experiencing complicated pregnancies and premature births.