CLIMB

Maeve & Cecelia


This is the story of two beautiful babies…

My husband and I had talked about having children for a while, and in March, 1995 we decided it was finally the right time. Much to our surprise, I found out I was pregnant on Memorial Day weekend. I was only six weeks pregnant, yet the home pregnancy test came back positive almost immediately. I remember thinking, “That was so fast, maybe it is twins!” That was the last I thought of a multiple pregnancy for a couple months.

I was very nauseous and tired for most of the summer and was growing large very quickly. On August 11, the day before our sixth wedding anniversary, we found out I was carrying twins during our fist sonogram. I was shocked and overwhelmed, but remember thinking this was good news, and that there were much worse things we could find out from a sonogram, as I would find out later.

Things just continued to get progressively worse after this. A few days after the sonogram, I learned that my hormone levels were very high (one hormone was five times higher than that of a singleton pregnancy). The genetic specialists recommended a double amnio to test for a chromosone disorder. I was very upset as I was already attached to these babies. After a very long two weeks of waiting, I found out the tests came back normal.

Despite normal amnio results, I had begun to feel that something was wrong. Baby B showed up slightly smaller on the sonogram during the amnio. The perinatologist did not feel it was a significant discrepancy in size. I had also begun to retain water. By the end of September, five months into the pregnancy, I was the size of someone who was full term with a singleton. I had also started to have some minor contractions. My doctor told me I could work two more weeks and put me on disability/bed rest at 26 weeks.

A few days after getting the news about the bed rest, I had another sonogram (at 25 weeks). This time the size discrepancy between the twins had grown from one week to 2.5 weeks. The difference in size itself was not what scared me, but the fact that the difference was increasing as time went on. I was very concerned about Baby B, but everyone, including my OB, told me she was fine.

Once I went on bed rest, I began to feel better and was more hopeful. I started to lose some of the water. First I lost three pounds, and then another six. After the six pound loss, I began to worry, but I was scheduled for another sonogram two days later. I felt a lot more activity, so part of me hoped that things might be getting better.

At 30 weeks, on November 9, 1995, I had another sonogram. The technician seemed nervous during the sonogram and when she brought the second twin up on the screen, she looked for a moment, and then left to get the radiologist. When he returned with her, he refused to answer any of my questions (but felt that he could ask me several). I went to another room as they tried to contact my OB. I remember knowing something was wrong and thinking we were going to have to do an emergency cesarean to get the babies out. I spoke to Baby B, the smaller twin, and told her to hang in there, we were going to help her, she just needed to hold on a little longer.

Forty-five minutes later, my doctor arrived. When he told me, “One of the babies did not make it”, it just seemed so unreal to me. I didn’t even get a chance to try to save her. I never thought she would die, especially not before she was delivered. I always thought I would at least get to hold her. I suspected there would be medical problems, but not death. She had most likely died a couple of weeks before, the increased activity I felt was from my surviving twin.

My husband and I were both in shock and upset. One of the most upsetting things was that I did not even know when she died. I wished that I had been able to be with her. That evening, my mother-in-law and I did a baptism and named her Cecelia Nicole.

The long odyssey was about to begin. I did not know how to handle this situation. I had just lost a child, and now I had to go on for my surviving baby. The doctor did not want to deliver now, because of the potential impact of prematurity on Baby A. I would carry both babies to term.

I was never upset about having to continue to carry Cecelia, she is my baby. I was upset about her death and the potential impact on her twin sister. I did everything I could to make sure that I was getting the best care I could for Baby A. I could not lose her too.

It became more and more difficult for me as time progressed. I didn’t know anyone else who had been through this. I was scared and needed more information. I contacted the Center for Loss In Multiple Birth (CLIMB), The TTTS Foundation (Twin to Twin Transfusion) and Twin Hope for information. The perinatologist became more involved in our care, and he played a very important role. We were not sure what caused Cecelia’s death, so we had to watch the pregnancy very carefully. I was admitted to the hospital twice a week for DIC blood tests and non-stress tests and had frequent sonograms to check the growth and vitals of Baby A. I was fighting for her.

I could not experience any of the joy of preparing for my child’s birth, this was a loss, as well. I could not purchase any items, prepare the room, discuss names, read baby books, etc. All of my energy went into doing everything I could to make sure she was born healthy – obtaining information, ensuring I had proper medical care, etc. At the same time I had to grieve the loss of her twin. I cried every day, for each one of them.

After most deaths, there is a two to three day period between the death and the funeral or memorial service. This allows a time for mourning, and then a time for some closure a few days later. For mothers who carry a deceased baby longer for the sake of another baby in utero, it is like being stuck in the time between the death and the funeral. That raw, painful period following the death lingers until the delivery.

One part that was very hard was that there were few people who could support me. Many people had a hard time with my situation. I was very isolated; home alone most of the day on bedrest. There were a few very dear people who helped me get through this, and I am eternally grateful for their support.

After four weeks of my doctor telling me I would go to full term, on the 34th week – December 8, 1995, he told me, on the advice of the perinatology staff, that we would have to induce labor for the health of me and my baby. There was no change in the pregnancy, he had just learned more about how to handle the situation. He was planning on doing this in the next few days and I was in shock. We scheduled an appointment with the perinatologist a few days later, he suggested waiting for 37 weeks. Over the next few weeks we went back and forth, trying to decide on the best date. I trusted the perinatologist the most, so I stuck with 37 weeks.

In the midst of all of this, I tried to make plans for Cecelia’s delivery, baptism, autopsy, etc. My doctor kept saying there would be no body, though this conflicted with what I had heard from some of the twin organizations I went into the delivery not knowing what to expect, but hoping to spend some time with her. I deeply regret letting my doctor influence my planning. I wanted to use this time to be ready for Cecelia at delivery – to plan the little time I had with her, and was not able to do this, due to his conflicting information.

The labor was by far the easiest part of the pregnancy. Compared to the emotional pain, this was nothing. I remember being 7 cm dilated and not even realizing I was in hard labor.

We delivered Maeve Una on 12/27/95 at 11:57 p.m., seven weeks after finding out about her sister’s death. The doctor held her up and I remember thinking, “She is a baby, she is OK”. I was so amazed, relieved and grateful. Her name means Mary Agnes in Irish, after my husband’s grandmother. Also, for me, “Una” means “one”, my one baby. Cecelia Nicole was delivered at 11:59 p.m. Cecelia was named after St. Cecilia, the patron saint of musicians. My grandparents had a large painting of this saint in their house and, as a child, it reminded me of an angel. The name “Nicole” is after my grandfather, Nicholas, and the patron saint of children.

We spent some time with Maeve, and later some time with Cecelia in the recovery room. Cecelia was very much a baby. Her body was macerated from being inside me for several weeks. I saw her beautiful little body, her hands, her feet and I cried and cried, she was my baby. The nurses helped us to perform a baptism. This was the only time I would ever have with my daughter, and it was special. Afterwards I spoke with the nurses for about an hour about everything that had happened. It was important for me to talk through all of this.

On the way to my hospital room, the nurse brought me by the nursery to show me Maeve. I saw her through the glass and the nurse assured me she was OK. I asked her if that was really true, because after so much worrying, it was hard to believe.

On Friday night I took home my daughter and on Saturday morning I planned her sister’s memorial service. This was hard, but it was important to have a service to honor Cecelia and so that we could formally grieve her loss. When I sent out Maeve’s birth announcement, I also wrote letters to each person explaining what had happened with Cecelia. Some people knew about twins but not the loss, some didn’t even know about the twins and I wanted to honor Cecelia’s life in a special way by explaining it to our family and friends individually. It was very hard to deal with birth and death at the same time.

Many people expected me to move on, to just go on with the one baby I had. It was easy for some to ignore that Cecelia ever existed; after all, I came home with a baby. Many people did not understand that the joy for our survivor does not negate the pain and sorrow for the baby we lost. We can feel great joy and great sadness at the same time. The loss of a child in multiple birth is a unique form of loss.

The first few months were very difficult, when I was not crying, I was angry and when I was not angry, I was worried about Maeve. It took me six months before I even felt like myself again – though I will never be the same person as before my twins. Not only was I grieving the loss of my daughter and raising a surviving newborn twin; but I was also recovering from a horrible medical ordeal that lasted over three months.

Some people did acknowledge Cecelia after the delivery. I am deeply grateful for the cards and gifts I received for her. I have a memory box for her. It contains: her photographs, the clothes she was to wear home from the hospital; her crib card; measuring tape; the first set of matching twin outfits I received as a gift, the matching Pooh and Tigger t-shirts I bought for the twins; a “complimentary” birth certificate from the hospital, and some other items. I also have a scrapbook that has all of the twin sonogram pictures; twin shower cards; dried flowers from bouquets I received after the loss; mass cards given by friends and family for Cecelia and all of the letters received for donations we have made in her name. These are all very special to me. Each time I look at Cecelia’s photographs, I see something different, and I always wonder what she would be like. I wonder how Maeve would be different with a living twin sister and what it would be like to raise twins.

The pathology report did not tell us very much. The loss was due to a “massive placental infarction”, but there was no reason given for the cause of the infarction. The perinatologist suspected that there were two placentas and that the cause of the loss was something that happened very early in the pregnancy. I went to a second hospital for more information. They confirmed what the first hospital said. It was hard to tell much from the placenta(s) as Cecelia’s portion was very old and not in good shape when I delivered. We do not know if they were identical or fraternal. Not knowing this is another loss.

I had a subsequent baby four years after the birth of the twins. I was concerned that I might consider him a replacement for Cecelia, but that in no way is true. It seems absurd to think of that now. I really want all three of my children. I used to find it hard to be around twins, now at times, it is also hard to be around families with three children. The second pregnancy was difficult emotionally, but it was so nice to have a child born without all the grief and sadness I had when my twins were born. I hadn’t fully realized what I lost in that first pregnancy (the hope, the anticipation, the joy) until I had a subsequent baby. I am happy that I was able to at least have this experience with another baby.

Maeve is now a healthy little girl. We speak of her sister during the anniversary of her death and on their birthday, and at other times, for example when twins are mentioned or just when she talks about having a sister. We are trying to honor her sister in a way that is healthy for Maeve, and also for her little brother.

Since 1998, I have led an on-line support group, eLIMBO (electronic Loss in Multiple Birth Outreach) on Yahoo, for mothers who have lost one or more children in a multiple birth situation. It is one of the things that I do to honor Cecelia. It has been important to have a community of women who can help one another during this difficult and often isolating time.

On occasion, a friend or relative of someone who has lost a multiple will contact me to ask for advice on how to help the grieving person. These are some of the things that are helpful:

Make a small gift to the family, either a donation in the baby’s name, a memento (e.g., an angel or bear, depending on the family’s beliefs) or something with the baby’s name on it. I have a small silver bell with Cecelia’s name on it that a friend gave me when she gave me a baby present for Maeve. I really treasure this.

Remember the anniversary of the death of the baby, their birthday and/or anticipated due date. A card, phone call or small gift will help the parents know they are not alone in remembering these days.

Use the name of the deceased baby when speaking of him/her; so rarely do we have the opportunity to hear or to say our child’s name.

The second Sunday in December is National Children’s Memorial Day. The Compassionate Friends sponsor a worldwide candle lighting at 7 pm in each time zone. A card with a candle is a nice gift to the parents on this day.

Remember the baby during National Stillborn Awareness month in October.

I have learned so much from my sweet little daughter, Cecelia Nicole. She has taught me how precious life can be and about what is really important in our world. I’ve learned to value what I have and to treasure my children. Cecelia lives in my heart forever.

Terry