In 1992, mutual friends introduced me to Ash. We dated briefly, but the relationship didn’t really develop and eventually fizzled out mainly because we lived in different states. In March 1995, I was rummaging through an old box of junk in my parents’ basement and I came across Ash’s telephone number. I gave him a call to see how he was doing. I didn’t know if he was married or involved in a relationship; I was truly calling on a friendly basis. He was surprised to hear from me; the next week we met for dinner. Nine months later, we were married.
We definitely wanted to have children, but we decided to get our lives in order before even trying. Once we started trying to conceive nothing happened. After two frustrating years, we sought the help of an infertility doctor and went through all the testing. After six unsuccessful intrauterine inseminations (IUI’s) we were discouraged and took the next step of in-vitro fertilization. Our IVF was assisted by ICSI (intracytoplasmic sperm injection), wherein a single sperm of my husband’s was inserted with a tiny needle into one of my eggs. I had a good cycle; 24 eggs were retrieved and 19 fertilized. Three embryos were transferred on September 15, 2000, one day after our wedding anniversary. After walking on pins and needles for two weeks, I found out I was pregnant. I’ll never forget where I was when I found out the good news – I was out to lunch with my friend Gail and I called my voice-mail. The nurse practitioner left me a message, “Congratulations, Lisa, you are indeed pregnant”. I stood on the corner of Lexington Avenue in New York City crying and trying to explain to Gail that it worked! The in-vitro worked and I’m finally going to be mother!
On October 10th, I was in terrible pain. I couldn’t stand up straight and I was vomiting blood. The pain was very scary for me – was I having an ectopic pregnancy? After an internal sonogram it was determined that I was experiencing ovarian hyperstimulation, a condition wherein my ovaries were engorged with fluid due to the large amounts of fertility medication. The doctor said the enlargement would subside and better yet, I was carrying twins! Our excitement helped to ease my discomfort. The twins appeared as tiny dots on the sonogram and a slight twinkling represented their heartbeats. A nurse at the infertility clinic said they were probably boys based on their heart rates. It sounded like an old wives’ tale to me, but from that point on we referred to them as “our boys”. By the way, she was right.
I was so excited a bout the twins that I couldn’t keep my mouth shut. I had to tell everyone. I was carrying the first grandchildren on both sides of our family. My early pregnancy (except for the hyper stimulation) was going well. I had very little morning sickness, but was I was exhausted. Everyone was shoving food at me, “You’re carrying twins – eat!” My only major complaint was the shortness of breath and heart palpitations. Some of my pregnancy books said this was normal and it could be a lingering symptom of the hyper stimulation. At the urging of my OB/Gyn, I saw my cardiologist. In addition to my heart murmur, I was diagnosed with arrhythmia, an irregular heartbeat and mitral valve prolapse. I had to wear a heart monitor and it was determined that my heart was racing at 190 beats per minute. I was put on a beta-blocker that would regulate my heart. The cardiologist told me that the babies might not be receiving the proper amount of oxygen when my heart was racing, so I started taking the medication. It took awhile to regulate the amount of medication. He also said he knew of many women who develop this condition while pregnant and they all had healthy babies. That eased my mind, but he did note that sometimes the babies are small due to a lack of oxygen. My biggest fear at this point was that I was going to have tiny babies; twins normally being smaller than a singleton and now the heart condition along with my thyroid condition which was also being monitored.
Thanksgiving weekend was probably the happiest I had been in years. I had the 12-week sonogram and there on the screen, not the little dots I saw in October, but two tiny babies moving and stretching inside of me. The technician printed out several sets of sonograms for us. We kept those miraculous images on the refrigerator; a constant reminder that we’re finally going to be parents, proudly showing them off to whomever stopped by.
I went for another sonogram on January 5, 2001 and this is when our lives were turned upside down. The sonographer was a friend of a friend. She was very outgoing and talking to us the whole time. She said Twin A looked great and was a boy. She got very quiet when she was examining Twin B. She left the room and a doctor came in. The intense look on his face as he stared at the screen scared me immediately. Twin B was very deformed. The bottom part of its body never developed. He was missing kidneys, no liver, no bladder, no stomach, had a hole in its heart, had intestinal problems, had skeletal deformation, was surrounded by very little amniotic fluid and instead of legs had only one lower extremity resembling a tail. The genetic counselor diagnosed Twin B as having sirenomelia, otherwise known as Mermaid Syndrome (hence, the tail-like lower extremity). Babies who have this condition either die in utero, or die within minutes of birth due to the lack of lung capacity. The odds of having a baby with this condition are 1 in 75,000. Something went wrong very early in the development stages, sometime between weeks six through nine. How could this be happening to us?
The doctors had to determine that the twins weren’t sharing a placenta and that they were in different sacs. If they were sharing the same placenta, healthy Twin A’s prognosis was very poor. After studying previous sonograms, doctors were able to determine that they were indeed two individual little beings with their own placentas. Ash asked the doctors what were the chances of the baby surviving sirenomelia at birth. The answer: “zero”. We had so many decisions to make. We were urged to have an amniocentesis to determine if Twin A was in fact healthy. The amnio results came back ok and Twin A was going to be all right. Due to the severity and fatal outcome for Twin B, do we selectively reduce Twin B now to give Twin A better chance? There were so many factors to consider it was mind-boggling. If we went with a selective reduction, there was a risk of 5 – 10% that I would miscarry A. If we didn’t reduce B, he could die at, let’s say, 26 weeks and A would be have to be delivered prematurely due to the toxic environment. Or, we could let nature take its course and just leave the sick baby intact and hopefully deliver one full-term, healthy baby; but this was highly unlikely; Twin B would most likely die in utero. How could we possibly be asked to make such a decision? We wanted these babies so badly. Twin B was never going to make it, and how could we risk losing Twin A? My life was at risk, also. The toxins could spread to me causing a life-threatening situation.
We wondered if Twin B was in pain, or could feel anything at all. After crying for our sick baby and pondering until we were blue in the face, we reluctantly opted for the selective reduction. The selective reduction was done on Thursday, February 1, 2001. It was similar to an amnio, but the doctor inserts potassium chloride into the tiny, damaged heart of B through a needle. The doctor said it could take a few days for its heart to stop beating, but two hours after the procedure, a sonogram confirmed that our little deformed baby B had passed away. I cried as he said my sick baby had died. Everyone at the hospital was so sympathetic. I was asked to participate in a Fetal Abnormalities Survey chaired by the Center for Disease Control; perhaps I could help someone in the future. I got very involved in trying to find a link between the disease sirenomelia and us. Diabetes could be a link; but we had been tested. The disease has a connection with identical twin boys (but our twins weren’t identical). Parents with abnormal chromosomes could pass the tainted genes on to their children, but we weren’t the connection. The determination for us: bad luck.
Ten days had passed since the selective reduction. I thought I was over the hurdle; the doctor said if something were to go wrong, it would have happened the first week. Sunday, February 11, I was lying on the couch and felt a big gush. I ran to the bathroom and I was bleeding. I called the doctor and he said it was probably the sick baby expelling itself and call him the morning. I was very concerned and went to bed, although I didn’t sleep. At 3:00 a.m. I started cramping. Then I noticed a pattern to cramps; they were coming every five minutes. Being a first-time mother, I didn’t know I was having contractions and was going into labor. When we got to the hospital at 5:00 a.m., the doctor on call performed a sonogram and said that the baby’s heart had stopped beating. I told her no, we know that one baby is dead, look on my right side, that is where the healthy baby is. I knew she was looking at Twin A; but I didn’t want to believe it. She paused and held my hand and explained, “I’m sorry, both of their hearts have stopped”. My emotions came over me like a wave. This couldn’t be happening – I’ve gone through enough with my one sick baby – Twin A was supposed to be o.k., the amnio said so, the doctors told me he was all right. I went from two babies, to one baby to nothing.
I was 24 weeks at this point. The contractions were getting worse and I was given an epidural for the pain and large doses of pitocin to induce the labor. I couldn’t believe I had to deliver my dead babies. It felt like a bad dream; this can’t be happening to me. So many doctors, nurses, hospital administrators were in and out of the room; so much confusion. I remember a social worker asking me if I wanted to hold my babies, or name them. I couldn’t bear to see the deformed baby; it would haunt me forever. My sister and brother-in-law and our parents were in the room with us. Everyone looked like a zombie as I lay there with all the IV’s hooked into me; I was in a fog. We watched the contraction monitor going up and down. My sister and mother rubbed my back as the intense contractions came. The anesthesiologist increased the epidural which made my legs numb, but I had such pain in my back. I panicked every time the door opened thinking that the doctor was coming in to do another internal exam. The doctor broke my water and the contractions were getting stronger and I was 7 centimeters dilated (I didn’t have to get to 10 centimeters since the babies were small). When I was delivering the babies, I took off my glasses and closed my eyes; I didn’t want to see them. So much chaos; people telling me to push; Ash trying to calm me. Twin B came first at 10:45 p.m., then A shortly after. The doctor pushed very hard on my uterus to pass the placentas, he said if I did I wouldn’t need a D&C. It passed and it was over. The nurse picked up the blood-stained blanket and whisked them away. The physical pain subsided from my back and uterus, but emotionally, my grief was overwhelming.
Ash quickly saw the babies; they didn’t put up a screen or a drape. I’ll never forget the look of grief on his face. I said to him, “Why did you look?” He said in case in the future I wanted to know what they looked like, he could describe them to me. The only thing he said was that they were a lot bigger than we had imagined. I still never asked him to describe them in detail to me. The social worker said she would keep pictures on file if I did want to see them in the future. Sometimes I regret not seeing them and holding them; never knowing if they had Ash’s eyes or if they looked at peace. They’ll never know that they were so loved and were going to bring so much joy into everyone’s lives. The doctors asked if we wanted an autopsy on the babies. We chose not to do so, it wasn’t going to bring them back to us. We gave clearance to the pathologist to examine the placentas and do additional genetic testing; maybe some of our unanswered questions could be solved.
I cried all night in the hospital. I had just begun to feel movement and now all I had was pain and bleeding. I was released from the hospital the next morning. I noticed that there was a little white silk rose taped to my door. I guess that was a signal to hospital staff that my babies had died. I sat in the wheelchair waiting for my husband to get the car. The other happy mothers were leaving the maternity ward with their babies. I felt like such a failure with an overwhelming feeling of guilt. I held on to my pocketbook, the only thing I brought with me to the hospital, hung my head and sobbed.
My parents were at my house when I got home. We held each other and cried. I took a shower and my mother helped me put away my maternity clothes and all the books and little things people had given us for the arrival of the twins. My dad is usually a quiet man, and he tried so hard to tell me funny little stories, but I just kept crying. Ash, who is a bundle of energy, slept and slept and slept. Maybe that was his way of dealing with his depression.
I called a few friends and co-workers to tell them the sad news. Flowers and gift baskets came pouring in; it was nice to know that people were thinking us, but no matter what, my feelings could not be put at ease. My sorrow made it hard to get through the day. I was bleeding and my breast milk came in, but I didn’t have any babies to feed and comfort. Some people are very understanding and just say, “I’m sorry” while others said “You’re young, you’ll have more babies”. I resent those people dismissing my babies as just objects that can be replaced.
I never imagined my first experience at pregnancy could be so devastating. Right after the loss, I used to panic when Ash left for work in the morning and the thought of seeing neighbors and friends made me want to crawl into a ball and cry. I started seeing a grief counselor and we attended a support group, both of which have been very helpful. Sometimes I can feel the anguish coming back again. I don’t try to hold it back; I learned that you can’t put a time limit on grief.
The babies were blessed and buried by the hospital. A neighbor gave me two little angel statutes that I put on the windowsill in their empty room. Sometimes when I walk past their room, I don’t even look in, other times I sit on the floor and cry. Odd as it may sound, I still feel blessed and special that I was pregnant with my twin boys. They made me proud to be their mother even though I never got to hold them to look into their eyes and tell them how much we loved them. I know in my soul that at least our boys are together, the way twins are supposed to be, and that they have each other.
Lisa…she subsuquently gave birth to a healthy son at full term.