Betrayed or Betrayal ?

I live in Florida. The Sunshine State. It’s true. The sun does shine an inordinate amount. When I wake each morning and open the blinds, the sun overtakes the house and I squint. Some days, I relish the clouds. An overcast day, even rain, is a welcome relief. It matches my mood, my pallor, for I am the parent of two identical girls, but only one came home from the hospital with me.

I realize that my life since the inception of these girls has been managed, literally, by bipolar emotions. I learned I was pregnant last March. I learned we were having twins quite by surprise during my amniocentesis, at about four months. I learned that same day as the doctors and nurses commented to each other, that they did not see a membrane separating the babies. I had remembered reading something about this in my myriad of books. I didn’t know this condition had a name, or that its presence would eventually mean the loss of one of my children. All I knew was I had at best, an hour of pure, unadulterated joy before I returned home to look up this “condition” and learned I was carrying monochorionic, monoamniotic twins. Then, I read the mortality rates and associated conditions that can arise from this type of twinning, and the joy was slowly eaten away by this nagging worry which intensified month after month.

I had never heard these terms before. I didn’t realize they would define my life as I knew it from that day forward. I prayed for a dividing membrane for the girls, but none was found. I struggled through the months, until the summer, when I was still working, albeit, slowly and belabored. I was never able to really pinpoint their kicks, where they were coming from, what part of the babies’ anatomy I was feeling that made the sensation. So many days, I didn’t feel anything. It was maddening in a sense, not at all comforting (like the books say!) because I could never tell if it was one baby or the other. These girls were able to move all over the sac, and they often switched sides and directions as many as two or three times during one sonogram!

One particular hot and sunny day, the kicks seemed to disappear. Tests, sonos, appointments, specialists, it was confirmed. Monday my sono had looked normal, Thursday of the same week one of the fetuses developed hydrops fetalis. Another term I had never heard and it will be too soon if I never hear it again! Hydrops is a condition characterized by excess fluid surrounding the vital organs of the baby. My perinatologist consulted with a world-renowned fetal specialist in Tampa, Florida, Dr. Reuben Quintero. He is part of the Fetal Diagnostic Center. He also revolutionized the care of monozygotic twins by helping to develop a surgery done in-utero called photocoagulation. This surgery closes the shared blood vessels between the twins so that they can be nourished from their own part of the placenta. It is most often performed on fetuses suffering from Twin to Twin Transfusion Syndrome. He agreed to take me on as a patient, and at 25 weeks I was rushed to St. Joseph’s Womens Hospital in Tampa, and the operation performed. Just prior, after a three-hour sonogram, Dr. Quintero gave us little to no hope of helping the babies. My surgery lasted three hours, and during that time, Dr. Quintero cordoned more vessels between the girls than he had ever seen shared in any set of twins before! His staff immediately asked me to donate my placenta to them for research. As my pregnancy progressed, I continued to defy the odds and statistics, and yet, I continued to believe that I would birth two healthy, identical girls and my life would go on.

I spent the next five weeks on strict bed rest. The pregnancy was difficult, both physically and mentally. I was not just sitting at home, waiting for a due date. I wondered every day, all day, whether I would birth one, two or no babies, alive or not, and when. It was emotionally grueling, and it seemed to never let up. At 30 weeks, I was readmitted to the hospital because one of the twins was showing signs of distress. During the five weeks following our surgery, we hoped and prayed that the hydrops would reverse. It never did. I still did not believe anything other than the life I had always dreamed of.

Then, it was September 11, 2001. Personal tragedy, global tragedy. For the last five days of my pregnancy, I watched TV, suffering with my fellow New Yorkers and Washingtonians. I am originally from NY, and I attended college in Washington DC. I lived the horror through CNN, as we tried to reach our loved ones. It was a maddening time, and then, I did not even have the escape of mindless TV to occupy the long days and nights.

I delivered both girls by emergency c-section on September 16, 10 weeks early. Carissa Faith was born first, at 8:42 a.m., and Chelsea Marie was born next, at 8:43 a.m. Carissa was not breathing on her own, Chelsea was. Carissa weighed three pounds, Chelsea only two. Carissa was the hydropic baby, the extra weight was due largely to all the extra fluid. They showed me both girls, one swaddled in the white NICU blankets, the other in an incubator. At that point I didn’t know, I didn’t know I had been betrayed. But the doctors and the nurses knew. Months later, when we inquired of many NICU staff about the babies they lose, they often replied, “mostly the hydropic ones”.

As so many of you can relate to, I was in pain, drugged, not aware at all of what was going on with my babies in the NICU. I had seen the NICU once briefly, during a tour when I had been hospitalized months before. Level III, Level II, step-down, it was all spinning in my head, and I understood none of it, till the days after September 16.

I visited both girls later that day. My husband had been approached once already by the attending physician about Carissa’s grave condition. My father was with him, and so he too had to go to my mom, and brother, who stayed at the NICU windows for more than ten hours, and deliver the news. I did not understand what Tim was telling me. I realize later that I was more convinced of my girls’ health and improvement than I was that there are trees or a sky. A few hours later, the doctor visited us in my room. He was very gentle, and told us of her seriousness without really telling us the words directly. Again, I didn’t quite “get it”. To this day I think, was it me? the Percoset? or my faith? Was I delusional, stupid, spent? I know I also felt betrayed.

With all the effort I had, we went to theNICU about 10 that night. We helped the nurse give Chelsea a bath. She was bright red. I didn’t know that was normal for preemies. I wanted her open, isolette to be next to Carissa’s. But Carissa was at the far end of the room, with a screen around her. I wanted both girls in the same isolette. I was convinced that Carissa could get better if she was near her sister. They explained to me that both girls needed so much medical attention at that point, that they could not be placed together. Besides, Carissa would not improve from any accommodation. The lack of oxygen throughout her system because of the hydrops had made her brain-dead. She did not respond to any stimuli, even the simplest, dilation of pupils. She could not sustain her own heart rate, she was not breathing on her own. Basically, she was being kept alive by machine, and they were losing her even with that. We held her for perhaps five minutes, only one time before she died. As they were wheeling me out of the NICU, she expired.

For those of you who had to endure the next part of the story, I have the most trouble with this one aspect. The signing of the paperwork. You know the form that gives permission to the staff not to resuscitate next time to patient goes into distress. “Pulling the plug” is what it has come to be known, usually associated with coma victims. I felt guilt-ridden for a long time after, that I had signed my babies’ death warrant. What if there was a miracle overnight? Haven’t we all heard of remission? What if the hydrops began to recede after they drained it, and my baby came to life? This was torture. It wasn’t until a good friend and midwife explained medically, what Carissa was dealing with, that I was able to come to terms with “what we did”. I was able to accept her death better if I believed it was God’s will, not us signing over her life to a bunch of machines. When I held my baby, her eyes were lifeless. Though I know she could feel us holding her, I don’t believe she was really in there. It was a misformed body, with a beautiful, beautiful soul that needed to be free. Every day, sunny or not, I pray that Carissa knows mommy and daddy love her, and that we will be reunited as our family, some day.

So began Chelsea’s 7-week stay in the NICU. I wanted to breastfeed, so I began pumping. My physical recovery was slow and painful. The grief was sickening. I had post-partum depression along with the grief. Carissa’s funeral was a blur of pain that I didn’t know existed at that depth. It wasn’t only my numbing pain, it was my husband, my parents, my nephews who had lost their mother to breast cancer ten years earlier as small children. Watching them grieve for Carissa, and for us, was mind numbing. And everyone reminded me ad nauseum, that I had Chelsea in the hospital and had to be there for her. Of course, I was there for her. I was almost more of a trooper than any mom I saw there. They were visiting their babies. They were scared, granted, afraid of “the worst”. I had already been through the worst. What else was there? There was life and death in the same breath. Life and death at the same moment. Betrayal and hope in every breath I took. The dichotomy is more than I can take in. Even to this day, six months later, the dichotomy is what makes me want to shout, “This is wrong, and I want every one of you to know it!”

I kept the rigors of pumping and visiting obsessively. I was so broken my friends from afar stopped their lives to come and help me heal. I thought I had gone mad. Recently, I went to see the movie “A Beautiful Mind”. I could actually feel what it was like to be John Nash, because I have livedin such extreme emotions. My life was, for a time, largely based on things that weren’t true, weren’t there. My Carissa was there, briefly, but gone so fast, I wonder sometimes what parts of my life are real and which are not.

As Chelsea grew, from two to three then to four pounds and discharged, we reveled in the joy. Then, as now, Chelsea is something of a celebrity. She had a feisty personality from the start. She seems omniscient, and is more advanced than many of the other preemies. She is also supremely beautiful, and people respond to her with such fervor, that sometimes it scares us. She is a wonderful baby, easy, jovial, cooperative, fun. She has brought joy to our lives that we have never known. Am I now the betrayer? How can I have this much joy, when my baby Carissa was taken away from me? One gone, one here. One happy and healthy, one dead. There is many a day I wonder if I have dealt with my grief. A counselor by training, I know the stages, I know the pitfalls, what to expect. I have friends trained in the same venue, who can watch my actions and speech and confront me on it if they think I am not living authentically. Funny thing is, I don’t know what is authentic anymore. Walking in the mall with Chelsea seems frivolous. Basking in her glory seems like a being a bit like a traitor to Carissa. Walking around downtrodden seems unfair to Chelsea. And then there is a marriage to consider, and finances, and real life. What is real anymore? I haven’t been able to decipher it. It involves love, that I know.

My husband was remarking recently that the sadness is so immanent. It will always be with us, this loss. I don’t care what they say about time, life is forever changed, and that’s that. How I feel about the change from any one day to another are the spokes on the wheel. For a while, I looked for people to understand, and many of the eyes reading this today, will feel you are the ones. That’s good, because I needed to tell my story of betrayal. This is my way of shouting out to the world, “This isn’t right”. If I am expected to live right, then why has this happened? When I find out, I intend to let you all know. Until then, if you think sunshine will help you, come to Florida. It’s almost always out, like it or not, a lot like the shape of my days and nights.


…The girls are her first children, at 40. My First Thanksgiving

by Baby Chelsea, November, 2001

This is a day of Thanksgiving in my family’s home because I am here. You see, today was I and my sister Carissa’s due date.

When Mom and Dad found out they were going to have us, they knew it was the most fitting due date, Thanksgiving. They waited a long time for us, and were more excited than any two parents could be.

Waiting all these months has been hard for them.

I know there are a lot of people to give thanks for; people who helped Mom and Dad make it to this holiday.

There is Nana Ida, who is the quintessential mother, taking care of my mom when she was in need.

Papa Rudy, he is always near with words and the presence of encouragement. He made mom feel less afraid.

There is Uncle Jeff, whose excitement at our coming is unbridled, and who is here for my folks for anything at the drop of a hat.

Cousins Justin and Adam can’t wait to play with me and be my family.

They love family, and they are sure to be good role models for me.

Then, there are all the wonderful people who live far away.

My Grandma and Poppy ache to see me, and support mom and dad from a distance, but with no less fervor. I am so lucky to have two sets of WONDERFUL grandparents!

Aunt Karen and Uncle Anthony, Uncle Brian and my cousins Anthony, Nick and Brianna are all pulling for us, and can’t wait to shower love on us. And someday soon, I’ll meet my brother, Scott.

I know Thanksgiving would not be complete without remembering all the friends and family who kept mom, dad, me and Carissa in their prayers, too many to name here, but there will always be enough love and thoughts for all these people. By now, mom is crying, because she knows she could not have such a great holiday had it not been for each of these special people.

Thanks for being here Auntie, you are definitely one of them!

Though I can’t eat the turkey or watch the parade yet, I know I am a lucky baby because I will love all of you, as you all love me. I’m glad Carissa and I came early, to be here in body and spirit for this holiday.

And every Thanksgiving from now on, will be more blessed than the one before, because I am here.