I was a 31-year-old married, stay-at-home mom, with a 20-month-old daughter named Miranda. As our “baby” turned into a rambunctious toddler, my husband and I had decided it was time to give her a baby brother or sister. A playmate, a confidant, and a partner in crime. I had grown up with 2 sisters, and I knew the close bond shared by siblings, and longed for that same closeness for my own children. Just two short months after deciding we were ready to start trying to conceive, and just a couple of weeks before Christmas, we found out that we would be adding to our family in the late summer. Although I dreaded the thought of being hugely pregnant in the heat of summertime, I was excited to be able to experience the miracle of birth again.
The pregnancy progressed smoothly and by my 4th month I could feel my baby moving inside of me. We had our routines, the baby and I. I would drink orange juice each morning with my breakfast, and that would always result in vibrant kicks and rolls. We would take big sister Miranda to the park, and imagine that soon enough it would be two little ones I would be pushing on the swings. I would rub my belly each night before I went to sleep, and say goodnight to the baby. I eagerly anticipated each prenatal check-up, because that gave me another opportunity to hear the heartbeat, and to get a glowing report from my OB/GYN about how wonderfully my pregnancy was progressing.
The morning of my 20-week ultrasound was filled with excitement and anticipation. My husband had taken the day off from work so he could come with me to see if we were going to be giving Miranda a baby brother or a baby sister. Like most parents-to-be, we believed the whole purpose of the mid-pregnancy ultrasound was to determine the gender. And once we knew that, the true planning and shopping could begin. I was desperate to know if I would be re-using the pink newborn clothes from Miranda, or if I would be going out to purchase a new set of blue onesies, blue pj’s, and blue blankets. Since females tend to run in my family, my husband was fairly confident the baby was a girl. As we sat in the waiting area for our turn to be called back for the ultrasound, we had agreed on the name “Madison” if it was a girl.
We were eventually called back to the ultrasound room where, for the most part, everything seemed to be fine. Then the big moment arrived. The ultrasound technician asked us if we wanted to know the gender of the baby, and we enthusiastically said “yes.” It was another GIRL! We were so excited to be giving Miranda a baby sister.
I assumed that the technician was wrapping things up and taking some final pictures when she asked me to remain lying down on the exam table for a minute, and then walked out. Five minutes later she returned with one of the OB/GYNs from the practice who casually explained to us that the technician couldn’t get a clear enough picture of the baby’s heart. She explained to us that we would need to go to a maternal-fetal medicine specialist (perinatologist) the following day for a level II ultrasound to look at the baby’s heart and also to look at the baby’s spine which appeared a bit abnormal. We were shocked and bewildered that anything was potentially wrong with our baby. We left with a script in hand for an appointment the next day to “Evaluate fetal heart and spine.”
The following day was Good Friday. Our appointment with the perinatologist was at 11:00 AM. My husband and I dropped Miranda off at a babysitter and proceeded to the perinatologist’s office. As we sat in the waiting room, I was still naively unaware of the significance of Madison’s health problems. I knew that something might be wrong with her heart, and possibly her spine, but assumed they could be easily fixed.
As the technician performed the level II ultrasound, the room was tense, dark, and eerily quiet. She took numerous pictures of Madison from the top of her head to the tips of her toes. At one point during the ultrasound the technician typed onto the screen “diaphrag hernia.” I had no idea what that meant, but assumed that if the baby had a hernia it could also be fixed easily. After about 45 minutes of taking pictures of our baby, the technician very quietly left the room. My husband and I remained in the dark room alone. We tried to reassure each other that things were probably fine. After all, we were both healthy and neither of us had any family history of birth defects. We were hopeful that this appointment was just precautionary, and that we would be able to leave the appointment and never again require the services of a perinatologist.
After about 10 minutes, the perinatalogist entered the room. He introduced himself, shook our hands, and then immediately said, “Your baby is very sick.” Those five words would change our lives forever.
He proceeded to tell us that Madison had what is called a left-sided congenital diaphragmatic hernia (CDH). For some unknown reason, her diaphragm never closed properly at around eight weeks gestation, and as a result her stomach and intestines had migrated up into her chest cavity. The extra organs in her chest had prevented her lungs from growing. Her trachea and esophagus were pushed out of their normal position and her heart was pushed over into her right armpit. Her heart seemed to be okay for the most part, though it was in the wrong place in her chest, was twisted around almost backward, and I would later read in a formal report that her heart did have possible outflow abnormalities. But her heart wasn’t the primary area of concern. It was the lack of lungs that was the critical factor. As long as Madison was inside of me and her blood was getting oxygenated from the placenta she would be okay. However, once she was born and the umbilical cord was cut, she wouldn’t be able to breathe on her own. Even a ventilator couldn’t help her if there wasn’t enough lung tissue to inflate.
We were devastated by all of the things the perinatologist was telling us. I’m sure that some things he said to us that day went right over my head. I was in a total fog once he started to tell us how sick Madison was. It all seemed like a bad, bad dream, and I wanted desperately to wake up.
The perinatologist asked me to get dressed and to come into his office so that we could talk some more. Once my husband and I were in his office he told us that Madison’s hernia was one of the worst he had ever seen. He showed us a medical reference book that included a diagram of a diaphragmatic hernia. He then mentioned the option of termination to us (I believe he called it “interruption”), but I was not fully convinced at that point that our situation would warrant that. I still had an iota of faith that Madison’s problems could somehow be fixed. It was a combination of denial and naivety. I asked him if most parents with a CDH diagnosis terminate the pregnancy, and he said that many of them do. At that point we were 20 weeks and five days along. Given the laws in our state, we would have three weeks and one day to decide whether we wanted to interrupt the pregnancy or not. The perinatologist told us that if we wanted a surgical termination (a dilation and extraction, or D&E), he could refer us to someone, and if I wanted an induced labor termination, my own OB could perform it. It was a Friday afternoon, so the perinatologist told us to think about everything over the weekend and to call him back on Monday.
As we descended the elevator and made our way out into the parking lot, my throat was so dry that I couldn’t help but cough uncontrollably. The sun was shining, birds flew carelessly overhead, and my world had just collapsed around me. We left the perinatologist’s office that day unsure of what would happen next.
It was Easter weekend, and I tried my best to remain cheerful and upbeat for Miranda. As I hastily arranged the items in Miranda’s Easter basket Saturday evening, I couldn’t help but to break down and cry, wondering if I would be buying items to fill two baskets the following Easter. Inside I was dying. I spent endless hours on our home computer researching CDH, researching prenatal lung development, and researching experimental procedures of in utero repairs. I started posting on an Internet message board for families of children with CDH. I talked online to many moms of kids with CDH. Some of them had children who survived; some of them had children who didn’t survive. Over that weekend I would wake up several times in the middle of the night to get back on the computer to do more researching. I was looking for anything to give me hope that my Madison might be okay. I was clinging to the overall 50 percent survival rate for CDH and hoping that my Madison would be one of the survivors.
Over that weekend, my husband and I repeatedly discussed the options of termination versus carrying to term. We literally went back and forth about 20 times as to whether we would continue the pregnancy or not. At times, we felt buoyed by stories of specialists in San Francisco and Florida who had dedicated their careers to treating CDH babies. But that hope was dashed when we realized that logistically and financially we could never make such a long-distance move, even a temporary one, work. We were a single income family, and all of our extended family lived 500 miles away. Who would care for Miranda while I stood vigil at Madison’s bedside for weeks, months, or longer? We couldn’t afford for my husband to take an extended period of time off from work, not to mention the monumental hospital bills we would incur. People often speak of hard decisions, but no decision could possibly be harder than the decision we faced. This was more than a dilemma, more than a pickle, and much more than a tough call. We finally agreed that we needed more information from medical specialists in order to feel comfortable making a decision either way.
Monday morning came and my husband and I called the perinatologist we had met with on Friday. We asked him if it would be possible to set up a second opinion level II ultrasound for us. He set us up for an appointment with another perinatalogist in a different practice the next day. Tuesday morning, my husband and I again arranged babysitting for Miranda, and proceeded to our appointment. We found this perinatologist to be very kind and accommodating toward us. He was very helpful and very considerate, taking his time with the scan and making sure that we understood everything that he was explaining. Unfortunately, his medical opinion concurred with the opinion of the first perinatologist, that our Madison had a very bad case of CDH. He explained to us that, although the overall survival rate for CDH was 50 percent, the survival rate drops significantly if the CDH is found before 24 weeks (which ours was). He told us that Madison’s chances of making it to term were 10–25 percent. He told us that if she lived through childbirth she would need to immediately be put on an extracorporeal membrane oxygenation (ECMO) heart and lung bypass machine, and that she would need to be on it for quite some time. I had learned about ECMO from my Internet research and knew that extended use of it could lead to blindness, hearing loss, and potential brain damage from brain bleeds.
We walked out of the second opinion ultrasound appointment knowing what we had to do. We didn’t want Madison to suffer for even one second. And we didn’t want Miranda to see her baby sister suffer in a body that was too sick to perform the most basic bodily function—breathing. We didn’t have any family in the area to help out if we had chosen to continue the pregnancy, and I was certain that all of the technology in the world couldn’t help my Madison anyway. Lung transplants are not done with newborns. I also felt there was a reason that we found out about her CDH so early instead of at birth, when many parents do. I knew that I needed to trust my instincts and follow my heart. As much as I didn’t want to say goodbye to my baby, I knew that I had to. For the previous five months every piece of food that I ate, every bit of exercise that I trudged through, and every wink of sleep that I got were to nurture her to grow and develop. I had bonded with this little baby and had so many hopes and dreams for her. She was to complete our family. Now I would have to let her go.
We called my OB when we got home that day and asked her to schedule us for a labor and delivery (L&D) termination. I chose L&D because I desperately needed to see my baby girl. I needed to kiss her sweet face and hold her tiny hands in mine. I had to see her just one time.
My induction was scheduled to begin two days later, on Thursday evening. I was to deliver Madison in the exact same hospital where two years earlier I had delivered my daughter Miranda. Thursday afternoon I had to leave Miranda in the care of a neighbor so that my husband could come with me to the hospital to get checked in. My mom and sister were set to fly into town later that evening to help us with Miranda and to provide us with much needed emotional support. Once I got to the hospital, I was walked to a labor and delivery room at the very end of the hallway. I’m assuming that was for my benefit so that I wouldn’t have to hear all of the other laboring moms-to-be and their healthy newborns. I had asked my OB and the nurse if it would be possible to check for Madison’s heartbeat periodically with a Doppler so that I would have some idea of when she passed, and they agreed.
My mom arrived at the hospital about 8:00 PM, just in time to say hello and to hear her newest granddaughter’s heartbeat for the first and last time. Visiting hours were ending so I sent my mom and my husband home to help my sister, who was looking after Miranda. I didn’t think that anything was going to happen with my labor during the nighttime anyway, so I figured that they might as well go home and get some rest. I was hooked up to an IV drip of Pitocin, and laminaria sticks were inserted into my cervix to slowly begin the dilation process. Around midnight, the laminaria were removed, and prostaglandin suppositories inserted. This caused horrible side effects of nausea, vomiting, and bowel incontinence which lasted until about 4:00 AM.
At 8:00AM, I asked the nurse check for Madison’s heartbeat, and it was still there, as strong as ever. Another prostaglandin suppository was inserted, and a short time later I started getting very painful and very strong contractions. My husband and mother arrived at my bedside, and were terrified when they saw the level of pain I was experiencing. The nurse checked me and said that I was about seven centimeters dilated and that Madison’s head was crowning. There was no time for an epidural. My OB was immediately paged, quickly arrived to my room, and after two short pushes my Madison was born. My second daughter Madison was born exactly two years, two months, two weeks, and two days after my first daughter, Miranda.
My OB checked for a heartbeat on Madison but couldn’t find one. She then placed Madison on my chest and cut the umbilical cord. I could feel my sweet baby’s skin against my own; she was so warm and moist. Just the way a new baby should feel. The nurse wiped her off a bit, wrapped her in a receiving blanket and gave her back to me. Here was my sweet baby girl! Holding her in my arms was a bit surreal. She was so very tiny, but seemingly perfect. She looked like a peacefully sleeping angel, with her hands crossed over her chest. I examined every inch of her little body, from the top of her head to her itty bitty toes. She was absolutely beautiful. She had whispery soft blonde eyelashes and eyebrows. About 30 minutes after her birth the hospital chaplain came to my room and said a prayer over Madison. He offered comforting words to us to ensure that we knew our sweet angel was in Heaven with Jesus.
We kept Madison with us for a little over two hours. After two hours had passed I had noticed the change in the color of Madison’s skin from pinkish to purplish to bluish. I didn’t want to remember her that way. I wanted to remember her as she looked when she was first born—pink and warm and beautiful. So at that point I allowed the nurse to take her away for the last time.
It has been several years since we said goodbye to Madison. I still think of her daily and cherish the short time we had together. The emotional healing was difficult at times, with setbacks often coming when I least expected them. But I can say with confidence that I have peace in my heart that I chose what was best for my family. I know that if I were to be put in the exact same situation today, I wouldn’t choose any differently. When given the choice between having a guaranteed clear conscience or being able to prevent my child from suffering—I chose to prevent my child from suffering. The only regrets I have are that I didn’t spend more time holding Madison after she was born, that I didn’t take more photos of Madison, and that I didn’t bring home the blanket from the hospital that she was wrapped in.
Over the years since losing Madison I have been searching for the silver lining in the dark clouds that hovered over me. I have been finding ways to turn my loss into something positive to honor Madison’s memory. I participated in the March of Dimes March for Babies for several years to help raise funds and awareness for birth defects. I started my own chapter of a volunteer group which knitted or crocheted baby blankets to donate to bereaved moms in hospitals and clinics. I am a volunteer host of an Internet message board for women who have terminated a pregnancy for medical reasons. I try my best to make sure that those who choose to terminate for medical reasons never feel alone or unsupported.
I have since gone on to have another healthy baby (yes, a girl). She is my “rainbow baby.” Through the clouds and the rain she came and brought light and color back into my life. At a time in my life when I was terrified of being in that vulnerable state of pregnancy again, she came along and helped me to see how truly blessed my life was. I simply adore her and treasure her spunky personality. Watching her play in the backyard with Miranda, eat popsicles on our front porch in the summertime, and sleep in the room that was to be Madison’s is bittersweet at times. It is a simple truth that she wouldn’t be here if it wasn’t for the decision my husband and I made to let her big sister Madison go. I know that Madison watches over her sisters, her dad, and me from above. And I know in my heart that I will be reunited with my middle daughter someday.
* Story reprinted, with permission, from “Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy.”