CLIMB

Rachel Ilana & Marissa Leigh


On May 13, 1996, the day after Mothers’ Day, we went in for a routine ultrasound to find out the gender of our baby so that we could be fully prepared and so that there would not be any surprises. We had a wonderful 17 month old son, Brian Mitchell, and were so excited that he would soon have a new brother or sister. ‘Guess what?’ the technician calmly said no more than three seconds after starting the ultrasound. ‘What?’ I said softly, knowing intuitively that she could not have possibly detected a problem so quickly. ‘There’s two!!!’ she told us. My husband was at my side holding my hand as we cried joyously together. We were shocked and delighted to discover we were having identical girls! No wonder I had been feeling so sick my first trimester, and no wonder I started feeling movement as early as 14 weeks. No wonder I kept having an unexplainable strong feeling this time it was a girl. There were two. At this point I was 17 weeks pregnant and thrilled to find out we would have two new babies at home to add to our loving family. Of course, we were scared and wondered how in the world we would manage three kids under two. ‘God only gives twins to people that can handle it,’ said a man to us outside the sonogram room as he witnessed our initial reactions. I will never forget that comment; it was so soothing then, and now it haunts me.

More frequent doctors’ visits became a part of our lives, with what soon became weekly trips to our regular doctors for routine exams and the high risk doctors for biophysical profiles. We were told we were having monoamniotic twins (same amniotic sac, chorionic sac, and placenta; very rare, 1 in 25,000 pregnancies) and felt even more special. Not much is known about this condition except that there is an increased risk of danger because the babies are in the same sac. My obstetrician explained that with this type of pregnancy there is a higher chance of a cord accident that there would be no way of anticipating or preventing, so to hope for the best. My perinatologist further explained that after the 30th week, the chances of survival increase significantly as the babies are bigger and have less room to move around. There is pitifully little research about monoamniotic pregnancies, but I did read one report that said the survival rate for the unborn babies with this condition is about 50%. Normally, I am somewhat of a pessimist but, with my husband’s support and encouragement, I was able to put this frightening statistic on the back burner and concentrate on doing everything I could to bring our girls here safely. We have a wonderful marriage and family life, successful careers, and great friends and have felt for years that we have been fortunate to lead a somewhat ‘charmed’ existence. This pregnancy was no exception, or so we thought…

So for the next few months, we thoroughly enjoyed our celebrity status and shared our news not only with everyone we know but with strangers who would innocently inquire about what I was expecting (‘Boy or girl,’ they would ask. ‘Two girls!’ I would proudly answer.) or why I was so big for my stage of pregnancy. We read everything we could get our hands on about raising twins, joined and began actively participating in our local twins club, purchased many of the extra supplies we would need, started two new college funds, became realistic about the logistics of having two new babies and optimistic that we were up for the challenge, and generally were so excited that we had been chosen for this special job.

The pregnancy progressed smoothly, with the normal discomforts one would expect with a multiple pregnancy. At our weekly biophysical profiles, each of our girls would obtain a perfect score of 10, although Baby B’s (Marissa’s) heartbeat was always harder to find initially. ‘She will be your strong-willed child,’ the technician would joke with us each week. The doctors explained that these biophysicals had a 95% accuracy rate for predicting the health of our babies for a seven day period (excluding cord accidents which could not be predicted), so no further monitoring was determined necessary. At 27 weeks I had to endure the three hour fasting diabetes test which I passed. Around that same time I caught a flu that resulted in the most horrible headaches I’ve ever experienced. With the help of major painkillers, these lasted only a few days. At the end of 30 weeks I was feeling uncomfortable but no longer sick, and we breathed a sigh of relief as we realized we had passed a magical milestone and our chances of bringing our girls to the world safely were better than ever. Together with our doctors, we decided to have a c-section after the 37th week to ensure the girls’ safety and avoid potential cord prolapse problems with Marissa. I was very scared of a c-section but wanted to do whatever was in the girls’ best interest.

I stopped working at 33 weeks because moving around was getting cumbersome and, as a psychologist, I found myself beginning to focus more on my own physical needs and limitations than on the mental health needs of my patients. Also, since I knew the girls would come early (no later than the end of the 37th week and very likely much sooner due to the status of the placenta which was starting to break down), I wanted some time at home to take care of the final preparation details. Once at home, I found myself staying in bed most of the days because my body was telling me to do so. This was very difficult because I am a real ‘stay busy all the time’ kind of person. But again I had to do everything possible to bring our girls safely to us. My husband was wonderful and literally took over running the household and completing all of the childcare duties for Brian, not to mention putting up with my hormonal moodswings. He was obviously exhausted yet never complained. In addition, he constantly took off of work and went to every doctor’s appointment with me (as he had for my pregnancy with Brian). He was so excited and did not want to miss anything.

On September 9, 1996 at 34 weeks and feeling huge (I had gained about 60 pounds by this point), we went in for our weekly biophysical evaluation. Our previous biophysical had been only six days before due to the Labor Day holiday, so we felt especially confident about the health of our babies as we remembered the doctor’s prediction of their health for up to 7 days after these tests. I was not feeling well that morning and had swollen up so much over the weekend that I could no longer wear shoes. We stopped for doughnuts on the way as a special treat and to wake up the girls for their tests. For weeks I had been craving them but would not indulge myself; I had been following the pregnancy diet compulsively.

We began our biophysical this particular morning with the ultrasound instead of the non-stress test. Rachel (Baby A) was evaluated first, and as usual quickly obtained a crashing in. My husband saw it before the technician did. ‘Why is she measuring smaller than she was two weeks ago?’ ‘Why isn’t her heart beating?’ The technician did not answer any of these questions for us, and I was in denial that there might be a problem until the technician ran out of the room to page the doctor and my husband began to cry. Within minutes the doctor appeared and began scanning Marissa. ‘Is she dead?’ I asked. ‘I’m sorry, she’s gone,’ he replied candidly, which I will always appreciate for his bluntness and honesty.

It was then that I went hyst erical and fell apart while my husband somehow found the strength to get us through the next few hours. I began crying uncontrollably and hyperventilating. One of the technicians immediately hooked me up to the monitor so we could see Rachel was okay. Cold compresses were applied to my head, and I was given a paper bag to breathe in. They all tried to console me and help me focus on Rachel’s healthy status as our obstetrician was paged. We moved across the street to the hospital where we were not sure at this point if we would be admitted. What a horrible feeling getting back in our newly acquired minivan equipped with one toddler carseat and two infant carseats, one of which we would no longer need because one of our babies was dead. The technician from the perinatal center rode in the car with us, got us quickly through the admissions area and into an LDR room where I was immediately hooked up to a monitor to see that Rachel continued to do well at that point. While we waited for our doctors to arrive and help us decide the best course of action (I wanted Rachel delivered immediately while she was still alive!), we telephoned our close family relatives (all of whom live out of town) and our friends who were watching Brian to let them know what was happening. Everyone cried with us and for us.

Finally, the obstetrician who was on call from our OB/GYN group arrived. It was with his encouragement weeks prior to this day that we decided on a c-section, so I was confused when he told me I was already 4 centimeters dilated (I did not even know I was in labor – it’s as if Rachel knew she had to come out that day one way or another. Being inside me was no longer a safe place for her) and asked if I wanted to try to go vaginally or still have the c-section. Quickly, we again decided a c-section was the best course of action, and I was prepped for surgery. The epidural took effect, and I was wheeled into the operating room, all the while trying hard to focus on Rachel’s life within me instead of Marissa’s death within me. Everything was happening so fast that (thankfully) I had not even considered that Rachel might be still alive but not healthy. My husband stayed out of the operating room, as told by the doctors and nurses, to put on his scrubs and he waited to be called upon. Within minutes, he was next to me holding my hand, and the incisions were being made. I was fully alert during the operation and remember feeling lots of tugging as the different layers of my body were opened up for their delivery. The room was filled with lots of people, somewhere between six and ten, many more than the two (doctor and nurse) present during our son’s birth (which was vaginal and uncomplicated).

Rachel was delivered first and came out screaming and kicking. My husband and I were so relieved to hear her crying that we immediately began crying tears of joy ourselves. These were quickly to be followed by tears of grief as the room became deathly silent and Marissa was delivered stillborn. Rachel was tended to by several of the nurses and brought to my head for a big tearful ‘happy birthday’ kiss and then whisked away to the NICU. She weighed in at 5 pounds 2 ounces and was 17 inches long, not bad at all for 34 weeks. Marissa was then brought up to my face where the nurses encouraged me to touch her and say good bye. I was shocked at how ‘whole’ she was, a complete person ready for a wonderful life but cut short right before her entrance into the world. It was difficult to tell how much Marissa and Rachel looked alike (although we knew they were 100% genetically identical) because her body had deteriorated somewhat at that point and her skin had started to peel. Shewas delivered at 4 pounds 4 ounces and 17-1/2 inches but for much of the pregnancy had measured bigger than her sister (they said she had lost weight from fluid loss). My husband was taking as many pictures as he could of both girls, and we will always cherish each of these photos. Once both girls were delivered and I knew I was all right physically, I urged my husband to go be with Rachel to ensure her safety. I’m sure he felt torn about whom to be with at that point. I was pretty numb as the doctor stitched me back up and remember lying on the operating table trying to make sense out of what had transpired. As I was wheeled from the operating room to the recovery room (or was it the recovery room to my hospital room?), we noticed what had been a delightfully sunny day had turned into one of the heaviest downpours we’d ever seen. Dan said it was probably God crying for Marissa. I think he was right.

The next few hours, which should have been filled with joy for Rachel’s sake, were among the most difficult in my life. I was overwhelmed beyond belief at the myriad decisions we had to then make on the spot. Did we want to see Marissa again? For how long? Clothed or unclothed? With or without a nurse? Did we want her to have an autopsy? Did we want her remains disposed of at the hospital? Would we have a funeral? What did we want her to wear for her ‘first photo’ that the hospital would takefor us that day? How would we reword the baby announcements we had so carefully planned out for the girls? What about the twin statues my husband and I had (unbeknownst to each other) commissioned as ‘birth’ presents to each other? So many questions that needed immediate answers. How could we possibly deal with all of this?

I can honestly say that I believe we made the best decisions possible, given our time constraints and the enormous shock and pressure of the situation. Marissa was brought to our room by a nurse who was present while we held her, cried, told her how much we loved her and how sad we were she had died. Again, I marveled at how complete she was and how close she came to life – there is such a delicate fine line between life and death. As I looked at her, however, I knew for certain she was dead – her skin was wrinkled and peeling and she had a bluish, almost ghostlike tinge to her. Her nose began to bleed due to the fluid loss – that was creepy. The nurse took pictures of us saying our good-byes to Marissa, and these pictures have been placed in a special memory box we put together for her (which also includes her baby book filled out as far as we could, her footprints, a lock of her hair, the obituary, the purple velvet dress I had bought for her first birthday, and many other memorabilia).

And then the doctors and nurses began visiting and giving their best guesses as to what had happened to cause Marissa’s death. But there was no consensus of opinions, only theories. The obstetrician who performed the surgery claimed it was a cord accident, as he explained to us not only were their cords braided around each other several times but they were so weakened that they broke in his hand during the delivery. The perinatologist, on the other hand, felt that perhaps the part of the placenta from which Marissa had been thriving broke away from the uterus, causing her to bleed to death internally. Although we will never know the true reason why Marissa was taken from us before she arrived, I personally believe the first theory at this point because it makes the most sense to me (due to the high risks of cord accidents associated with monoamniotic twins we had been warned about). Whatever the reason, especially if the cords were braided together as we were told, then it’s truly a miracle Rachel survived and she is meant to be with us for a very special reason. I’m convinced she probably would have died later on that day; many of the medical staff concur.

Shortly after we said our goodbyes to Marissa, as the medical staff were consulting with us, we were thankfully informed that Rachel was doing fine and would be rooming in with us within the hour (a very long hour that was, although I knew how very fortunate we were her brief stay in the NICU was coming to a close). I still couldn’t believe she was here and okay and that her sister was not. So a few hours after her birth, Rachel was delivered to our room, and then our son was brought to us by a dear friend who takes care of him during the day. Our family was together and complete in one room, but not so at all!!! What a mixed bag of emotions I was experiencing at that point.

About an hour later, our rabbi arrived and guided us through another series of difficult decisions. Since our religion does not directly address the issue of stillbirths, we created some personal guidelines with which we felt comfortable and with our rabbi’s blessings. We decided to have a funeral for Marissa four days later (which turned out to be on Friday, the 13th of September), a short graveside one so Rachel and I could attend. We decided not to conduct an autopsy, since according to the doctors this invasive procedure would be likely not to give us any more information than we already had (which was not much). Our rabbi gave us names of funeral homes and the cemetery where our synagogue has a section, and he was kind enough to offer to accompany my husband the next day to make all of the arrangements.

Sometime after the rabbi left and we called our families to inform them of the decisions so they could make appropriate travel arrangements, things settled down in the hospital and it was time to go to sleep. Only I couldn’t. Or better yet, I wouldn’t. I tried and tried but was extraordinarily fearful that somehow if I stopped watching Rachel she too would die. I tried to convince Dan that we should take turns staying awake with her to make sure she was breathing, but the stress of the day had caught up with him and he fell asleep for a few hours. I was so angry with him then, although in retrospect I understand he had to handle the joy and grief of the day in his own way. So I laid in bed awake all night, holding Rachel and feeling her breathe, talking to her to tell her how much I loved her and how glad I was she was here, and crying for the loss of her sister. I was physically and emotionally exhausted but would not let my body give in to sleep. The next morning when the nurses found out I had been up all night, they developed a plan for my remaining nights in the hospital for me to take a sleeping pill that would allow me to rest but not so deeply that I would miss any of Rachel’s feedings. During my sleeping hours, they would take Rachel to the nursery (which met my need to have somebody watching her at all times), and they would bring her to me for feedings. This plan worked well and allowed me some peace of mind.

The next few days in the hospital went by in a blur. Balancing the simultaneous joy and grief was (and still is) such an unbearable and unfair task. Although Rachel was doing well and seemed to have no major birth defects (!!!), I worried constantly about her weight which dropped down to and leveled off at 4 pounds and 10 ounces by the time we left the hospital. I was so scared to be bringing home such a small and fragile baby that I (easily) convinced her pediatrician to allow us to stay in the hospital an extra day. I wondered if I was going to be able to bond with Rachel or if I would distance myself to avoid getting close to her in case she died too. However, as with our son, I found her irresistible and had no control over the instant and strong bond we formed.

W e have no close family nearby, so Dan ended up taking care of all of the arrangements for Marissa’s burial on his own. I felt so badly for him that he was left to this horrible task, and he did so well with each and every aspect. I don’t know if I could have done it myself. I will always be grateful to and proud of him for how he handled these details. We tried to make as many of the decisions as we could together, and he would call me in the hospital from the cellular phone to discuss casket types, plot locations, etc. We also decided together that Marissa would be buried in the matching dress my sister had bought for the girls to leave the hospital in (we never imagined she would be leaving in that dress but without her life). The dress, a 3-6 month size, was huge on her but very special. (Even the twin preemie outfit her first photo was taken in swam on her as did Rachel’s.) Covering Marissa would be the beautiful personalized blanket Dan’s mother knitted for her (Rachel has a matching personalized one). In one hand would be a teddy bear my parents had given her (Rachel has its twin). In the other hand would be a family picture we had taken of Rachel, Brian, Dan, and me in the hospital, with some very special words written on the back (I wish we had kept a copy of the words for the memory box, but I will always remember the gist of it.).

On Rachel’s fourth day of life, the day before we buried her sister, we brought her home. It was a chaotic day, what with getting into the house, balancing feedings (which were almost impossible because being so early she wanted to sleep more than wake up to eat), trying to take care of my own physical needs, and coordinating travel plans for relatives who were already starting to arrive for the funeral. It was impossible to focus on the life and the death together all the time, and in the beginning we found ourselves focusing more on Rachel’s life and taking care of her needs, which we owed to her. We are fortunate to live in a very closeknit neighborhood with very special neighbors. Together over twenty families coordinated planning an open house buffet for us after the funeral. We will always be indebted to them, as well as to our friends and families who carried us through the most difficult time in our lives.

The day of the funeral was sunny and cold. My sister rode in the car with us to the cemetery for moral support. She agreed to take pictures for us of the funeral for the memory box, although in retrospect she was not the best person to ask to serve as historian as she was very shaken up herself (it still amazes me how much our personal loss had a strong impact on others). Brian and Rachel were with us – I felt very strongly that they be present at their sister’s funeral, even if they were too young to remember it. It all seemed so unreal until we rounded the corner and turned into the cemetery which itself was beautiful. My husband had done an excellent job, and I think I remember telling him so. I held Rachel so tightly that morning, crying into her blanket for her life and her sister’s death. The service was personal and touching. Our rabbi said many beautiful things about loss and grief that rang very true to us. For example, he explained that, while we needed our friends and family around to support us, there would be nothing they could say to comfort us and make us feel better. We needed to experience the pain to initiate the grief process, and we knew that. Still, as well meaning people do, many people attempted to comfort us with their words and unintentionally ended up hurting us or putting their feet in their mouths instead. They still do, although we know everyone means well.

All that said, it is now almost four months later, and I feel years older than my age. I no longer cry constantly throughout each day but still cry many times a week. Marissa is on my mind and in my heart all the time, especially in the wee hours of the night. As expected, all of the ‘firsts’ are difficult, like going back to all of the places where I went when I was pregnant and knew the girls were both alive and thriving. So much is difficult emotionally, and yet so much is physically easier than we expected it to be. I constantly feel guilty about this. Logistically, it is certainly easier with one newborn and a toddler than with twin newborns and a toddler. But I hate it and get so upset that we were robbed of the opportunity to have our chance with twin newborns (and toddlers, and teenagers, and adults, etc.). Of course, everywhere we go we notice twins, and this adds salt to the wound, which is still so fresh. A few weeks ago I went out to the movies with some girlfriends (I was practicing gradually separating from Rachel since I was a couple of weeks away from returning to work) and sitting in front of us were these identical twin ladies in what looked to be their 70’s. This really got to me – here were these women who had had the good fortune to spend their entire lives together and be close. Rachel would never have that chance because she (and we all) was (were) robbed.

Although I am delighted to have two healthy children, I constantly struggle each day with so many issues.

Sheri

Sheri has written a letter to Marissa every year on their birthday, and shared it in the newsletter. this is the letter on their third birthday.

September 9

Dearest Sweet Marissa,

Happy 3rd Birthday, my sweetest angel! Mommy always thinks about you and misses you. You have been in my mind so much this week. Thinking back to the saddest day when we found out you had died and having to focus all of our energy on making sure your sister was alive and delivered safely. We talk about you all of the time and tell everyone about you, whether they ask or not, whether they want to hear or not. You will always be a very important part of our family!!!

Rachel has been able to start articulating knowledge of you this year. And Brian continues to understand more and more what happened. To tell you the truth, their understanding has provided some relief to me. When people stop us to ask if Brian and Rachel are twins (which still happens on a daily basis), Brian and Rachel now pitch in to help answer. ‘I a twin,’ Rachel typically says proudly. Brian goes into the whole story about how he is not a twin but Rachel is and that you died and we love and miss you. Brian’s understanding of your death has taken new levels this year. He has asked questions like, ‘Is Marissa’s butt in the mud?’ Rachel surprised me last week when we were at the cemetery picking a new location for you. She told me that tomorrow she was going to fly up in the sky to see you.

By the way, I hope you don’t mind that we will soon be moving you to a new location within the cemetery. The beautiful tree by your grave was struck by lightening this year, died, and had to be removed. The cemetery people were not replacing the tree, so we decided to take the opportunity to move you to our temple section which had not been built when you died. We chose a beautiful spot near the temple bench so we can sit and talk to you. There are woods very close by, and the cemetery people said we could plant flowers if we wanted to. I’m sure the kids will want to do this for you and for them.

You probably know this already, but one of Rachel’s favorite toys these days is an orange (her favorite color) two-headed dragon. I don’t think it is any coincidence and feel it is rather symbolic of you and her. Oh, and her favorite blanket is the one she refers to as the ‘ice cream cone blanket.’ You are buried in its identical match with your name knitted into it by your Icky.

As I always say, nothing will ever replace the loss of you and the pain of your death continues to pierce my heart. We continue to do several special things each year to memorialize you in some way in an attempt to make ourselves feel somewhat better. This year we have made more charitable donations, including ones to CLIMB and the Twin to Twin Transfusion Foundation as well as to our temple. Your daddy and I also developed an extensive reading list for children on loss and death issues; the list has been distributed internationally to others. We had a very special weekend in Chicago in May where we all went for a CLIMB/LIMBO retreat. There we met other special families who had also lost a multiple. We spent the weekend talking about you, sharing what precious few mementos we have of you, memorializing you with bubbles, etc. Catie Olsen, a good friend of Mom’s through the internet, made a very special quilt square in your memory, and she is making an identical one for Rachel. And to honor you especially at your and Rachel’s birthday, this year we have asked all of the birthday guests to bring a flower for you. We will put them in a special vase at the birthday party (where you should be right beside your sister), along with your candle, and then we will bring them to you at the cemetery on your burial anniversary.

We will have many sad moments this week as we celebrate the miracle of Rachel’s birth and the horrible pain of your death. Rachel starts preschool this week, and you should be there to start right along with her. Everyone at her school will know all about you. Everyone always will know about you. It continues to be my mission to educate others know about you and the dangers of our particular type of twin pregnancy.

Another year has passed, and we are still no closer to deciding whether or not to have more children. We know we could never replace you. Rachel still needs me in a very physical way, although she is beginning to explore her world a little bit on her own – very sad for me to see because you should be here to share with her this world together. Hope you are sharing our lives in your own way. You are certainly always with us!!!

Wishing you were here always and with all of my love forever,

MOMMY