One Dies, One Survives
interviews by Kara L.C. Jones

Several months ago, I had an odd week here at KotaPress. In various ways, for various reasons, I came into contact with four different families who had experienced the birth of twins where one of the children died and one lived. The "coincidence" struck me as odd. In my 4+ years of doing outreach work I had only come in contact with one or two families that whole time. Now, in one week, four families. In trying to figure out how to best help everyone involved and offer further outreach to readers who might also find themselves in this sort of bereaved situation, I asked the families if we might do interviews with them. They all graciously agreed.

What follows is the Q & A with three of those families. I hope to have the fourth for next month's issue. This month, our conversation is with Sheila, Tracy, and Michie. I want to thank all of them for their honest, candor, and insights.

Kara: First, please feel free to share the particular circumstance of your loss. I know that some of you had one twin stillborn and one live; others had both born premature and one died very soon after birth. So if you want to first share your story specifically...

Sheila: I was pregnant with twins. While packing to move one day I started to bleed very heavy. We went to the ER at the hospital close by. They told me I had miscarried. I was so upset it was unbelievable. So we left the hospital in tears. I went home and later that night I passed the baby.
It looked so small and helpless. There was nothing I could do. The baby was there in my hands.
You could make out the arms and head and legs. But it was so tiny I couldn't tell the gender of it.
I just thank God that they never did a D&C that day. Because if they would of my Shyann would be here. We decided to name the baby Louise Marie. We felt in our hearts that it was a girl. See I was only 6 to 7 weeks along with them both.

Tracy: In August 1999, I found out I was pregnant. This was my third pregnancy. In December 1999, my AFP test came back high, so my doctors wanted to do an u/s to confirm the due date. I was 5 months along and this was my first u/s of the pregnancy. The ultrasound showed we were having twins. This was on December 16th and one of the most exciting and joyful days of my life. I had always wanted twins and have many sets of twins in both my husbands family and my family. My husband and I looked at each other and I remember we both had huge smiles on our faces…laughing, me crying….it was wonderful. We kept our surprise a secret until Christmas and announced our news by making personalized calendars with our u/s pics of “Baby A” and “Baby B” for the month of May…our due date month. On January 19th 2000 (6 months along), I had a routine appt with my ob. I told him I had more movement on the right side than the left. He used the doppler and heard two heart beats (so he said), but agreed to do an u/s that day too. The u/s took forever, but it never dawned on me anything was wrong. The u/s tech got up, left, and was gone for a while. Finally, she came back in with the dr who said that the reason I had more movement on one side than the other was because one of my twins was dead. Of course, my husband was not with me because this was a “routine” appt and I went into hysterics. The doctor offered no comfort to me, and did not even say he was sorry. Not even one little “I am sorry” from him. He was more concerned with getting his u/s room ready for the next patient and made me call my husband myself. Then they put me in a little room by myself where I cried in hysterics while waiting for my husband to get there. He got there and the doctor came into my room and spoke to him as though I was not there. He told my husband I was a danger to myself, my other baby, and my husband. He said my husband “needed to do something with me” and that I should be sedated. I became angry and yelled at him, he yelled back at me. I told him I would never come back to their office again, and I didn’t. I wanted a second opinion on the u/s (denial) and my husband talked to another one of the doctors at that practice and got him to agree to send me to the perinatologists in town for the other u/s and they then agreed to take me on through the rest of the preganancy. I continued on with the pregnancy, as this was my only option. We found out we had identical girls and I was told that Amanda would be broken down by my body and probably would be nothing more than a blob of tissue upon delivery. Because I was past 20 weeks gestation when she died, according to Iowa law, she was technically stillborn even though she had died 3 months prior to birth. So, prior to the birth we also had to make arrangements with a funeral home to have her cremated. If we had not done this, the hospital more than likely would have thrown her away. So, after going on for another 13 weeks after Amanda died, I was induced three weeks early after begging my doctors to induce me. I was terrified I would lose Amelia too, as they did not know why Amanda had died at that point. They did an amnio to check for lung development on Amelia and determined her lungs were far enough along. I was induced and delivered both of my girls on April 12, 2000. Amanda thankfully was not a “blob” of tissue. She was very tiny and gray colored…but she had every finger and toe. She had hair and looked just like Amelia. The only thing missing was one eye had decomposed. She was 23 cm long and 5.6 ounces in weight. Amelia was born without any problems at all. My parents, a special friend and my husband and I were the only ones to hold her. We held her for 3 hours before my husband walked her to the morgue, and I will never forget seeing him leave that room with my lost angel knowing that was the last time I would ever hold her in my arms. After delivery, my perinatologists determined that both of their cords had attached to the placenta in the EXACT same spot, more or less fusing together. This caused Amanda’s part of the cord to give out…resulting in lack of oxygen and nourishment. My doctors said they had never seen a case like ours before. They also said we made the right decision in inducing because they felt the cord would probably have given out and Amelia more than likely would have been stillborn also if I had gone those other three weeks.

Michie: After 10 weeks on bedrest & a major attempt to change doctors, I found out during an ultasound that my son had suddenly died in the past hour. 14 hours later I vaginally delivered my twins, Levi (a female) and Luke, who was stillborn 4 minutes later. The conclusion was that I had preeclampsia that went untreated since 23 weeks & the smaller baby, Luke, could not handle the stress, resulting in his death. Levi & myself had complications of the preeclampsia after delivery. She spent 10 days in NICU & I signed out against medical advise 4 days later to attend my son's funeral. I am still on blood pressure medicaiton 6 years later.

Kara: It has struck me that the grief journey of a parent where one twin died and the other survived, is a very unique situation. Yet in the past week, I've had random, totally unrelated contacts with four families with just this situation. Have you met others along the way with the same circumstance? Or have you felt a bit alone in these aspects of your loss?

Sheila: Well a few years after I had lost the twin to my daughter. I had met a woman who had the same thing happen to her. So we began to talk about how we were in shock to find out that we were still pregnant after going through what we did.. So before this I was alone so to speak...

Tracy: I have only met 1 other family face to face that has experienced this situation, so we have felt “alone” in it for the most part. My husband and I joined a “Snowflake” group, which met for 6 weeks. We went soon after we lost her and I was still pregnant. We felt out of place because everyone else there had lost their first child (it was our 3rd pregnancy), and I was still pregnant with 1 living baby. However, the leader of the group got us in touch with another family that 7 years earlier had almost exact circumstances…They found out at 5 mos it was twins, and at 6 mos found out 1 had died in utero…identical twin girls. They were extremely helpful and Sandy was at the hospital when we had the girls….and she is the special friend that held Amanda. We named our girls, Amanda Rae and Amelia Rae, after their girls, Halle Rae and Sophie Rae. Nobody else has any idea of what it has been like. And though no fault of their own, many have been hurtful to us because they cannot comprehend how you must try to celebrate the birth of one child, and mourn the death of your other child at the same time.

Michie: At the time of my loss, I did not know of anyone who had experienced any kind of loss beyond 8 wks. gestation, let alone the loss of a twin. I was a member of the Mothers of Twins Club & of course all of them had both of their surviving twins or they would not have been in the group. This made me feel even more alone in my grief. At the hospital support groups, I never met another mother who had lost one twin. After 7 months of searching, I came across Neo Fight, which matches parents with parents who have had a similar loss. I met several moms who had lost a twin, but none were boy/girl sets.

Kara: In my advocacy work, I really try to promote that we are parents even after our children die -- albeit a "different kind of parent" in grief. For you, there was a double parenthood -- all the "normal" sleep deprived, overwhelming, newborn parenting and then also the parenthood in grief. How did you get through those early days? What kind of support did you have around you?

Sheila: This is a hard one to answer for me.. The loss of the twin was very early in my pregnancies.. I was told your still pregnant so be happy and love that one.. But you still always have those wonders. What would it be like to have the other twin there?? Every time I looked at my daughter I would think I had 2 of you.. As for support my husband was there for me through everything.. And very supportive..

Tracy: I got through the early days on “autopilot” if you will. Truthfully it was a blur and I don’t remember much of it at all. We had very little support from family that we thought would be there for us. My parents and my husband and 1 close friend were about the only support system I had where I did not have to explain my feelings and be made to feel that I had to defend myself for feeling the way I felt. They were the only ones that took what I said at face value and I did not have to justify my feelings to them. For that I am thankful.

Michie: I got through the first 2 weeks because my daughter was in the NICU. Although I visited her daily, I focused on the loss of my son. I felt secure in that the NICU staff was taking good care of my daughter, so I was consumed with my grief. I think this may have also been a way to guard myself from the possiblity of losing her. I also felt that the final plans & burial of my son was the only thing left I could do for him, so I wanted to do it the best I could, which took all the energy I had. During the initial stages of grief, the people around me were supportive.

Kara: Did you feel you had time for BOTH children -- the surviving newborn and for grieving the twin who died?

Sheila: Oh yes I know that the child I had was a gift to me and a total blessing.. As for the grieving of the twin it was like the twin was living through my daughter..

Tracy: I don’t feel I had time for both of my girls at all. I was all consumed with Amanda. There were so many emotions and feelings….devastation, disbelief, sorrow, anguish, pain, guilt, anger, hopelessness, failure, and the sadness was like a black hole that I truly thought I would never get out of. It was very scary and uncontrollable. The pain was truly unbearable. I did the very minimum for Amelia. I fed her, changed her and that was about it. Every time I looked at her I cried. It was painful to look at her…a constant reminder of what I had lost….and nobody else could understand it because, as many said to me, “At least you got one”. I knew I was missing out on enjoying her, but could not do anything about it. My mind just wanted to shut down.

Michie: I did not have the ability to take care of both of my children fully until my son's affairs were over. After his burial, I slowly started shifting my focus to caring for my daughter. I did visit my son's grave everyday when I left the NICU & thought about him constantly.

Kara: Was there anything exceptional that the "professionals" around you did to help your family at the time of birth/stillbirth and/or since then? If so, could you tell us a little about that?

Sheila: There was really nothing that was done or said to me at all.. "because I was still pregnant"

Tracy: The hospital staff were absolutely wonderful to us. They knew our situation and did everything in their power to help us through. One thing that I won’t forget is one of my nurses broke down and cried with me and held me after I had my girls. She was moving me out of the birthing room to my other room. Everything suddenly hit me like a brick wall and I just broke down, and so did she. She held me and cried with me and I doubt she will ever know what that meant to me. It meant everything to me. She validated the importance of Amanda and my pain. I remember saying, “I can’t do this. I can’t go on without her. How can I go on without my baby?” and all she said was, “I don’t know.” Instead of telling me to be strong, that I have to get through it for Amelia, that everything would be ok… she instead was on my side and knew the turmoil I was in and supported me in it rather than brushing over it or minimizing it. That was very important to me and still is. My delivering doctor also extended his sympathies. We were also visited by various hospital personnel including counselors and a couple of the Sisters. Our hospital also has an annual “Walk to Remember” which they started in 2000 for all the lost babies and we attend this every year. The hospital seems very proactive in helping parents with the loss of a child. The woman that started the Walk to Remember is wonderful and throughout the first year checked with us periodically to see how we were doing. She is very active in bereavement and grieving.

Michie: The staff was good about allowing me to spend time with my son after his death, they did not make me feel uncomfortable about taking photos or keeping him in my room until the next day. They made it seem "normal" to have him spend the night in the hospital's pull out bed between his parents.

Kara: Was there anything particularly unhelpful that people did? If so, could you tell us about that?

Sheila: You still are pregnant and that you should focus on that child and for get about the other one you lost..

Tracy: The thing that comes to mind as far as being unhelpful were all the comments. While I am sure they were well intended, the majority of them were hurtful. Comments such as, “It was God’s will”, “At least you got ONE”, “You need to move on”. The other thing that hurt was when people would not even say ANYTHING and I knew they knew what had happened. All I wanted to hear was “I am so sorry you lost her.” The thing that comes to mind as far as being unhelpful were all the comments. While I am sure they were well intended, the majority of them were hurtful. Comments such as, “It was God’s will”, “At least you got ONE”, “You need to move on”. The other thing that hurt was when people would not even say ANYTHING and I knew they knew what had happened. All I wanted to hear was “I am so sorry you lost her.”

Michie: The staff was not good at keeping me posted on my daughter's condition. After some surprises in her care, I decided to call them regularily to make sure I was up to date on her at all times. Also, the nurse waited so long to take the photos of my son after his death, that they came back very bad. My saving grace was the photos my family had taken soon after his delivery. I had worked on this same Labor & Delivery unit a few years before & had been admitted there 3 other times before my last admit. The staff, whom I knew, were friendly & would stop in to see me. After my son's death, they all (except 2) avoided me. I expected consolances, just as I had received congratulations after they initially found out about my pregnancy.

Kara: I know that the "firsts" of everything are always difficult after a child has died. But you all had a unique situation in which you were also experiencing the "firsts" with the living twin. Can you tell us a little about what the first birthday, first winter, first spring thaw, etc have been like for you in terms of the balance between life and death, grief and healing?

Sheila: The first of all the things mentioned in the question... It was like the other twin was right there living through my daughter... But there was always questions and thinking we would of has 2...

Tracy: The “firsts” were all difficult and still are. I really don’t remember a lot of the milestones in the first year. The only thing I distinctly remember and wrote down was when Amelia first began walking. Everything else is lost….I don’t know or remember, and that saddens me so very much. Even now when Amelia passes another milestone or does something for the first time I think to myself, “They should be doing this together.” Their first birthday was horrible. As we have had very little family support (most chose to ignore our situation and only gave support when forced to do so), I had a hard time trying to decide how to have a party for Amelia, yet still include Amanda. We ended up having 2 parties. The first 1 was with just my parents and the cake had both of their names on it. The other party was with everyone else and the cake only had Amelia’s name on it. I also had a candle burning the entire night next to the cake as well as had printed up a poem relating to their first birthday and set it out for everyone to read. Nobody commented on it but I did see them read it. The changing of the seasons such as the first snowfall or the first sign of spring at first only seemed to be things that showed that life continues on no matter what happens. And it was very upsetting to me to think that the world didn’t stop just because my life had. It was also upsetting to realize that I had to continue living my life and try to figure out how to do that without her.

Michie: I spent much of my time in the beginning worrying about the "firsts". I found that the anticipation of them was worse than actually dealing with them. When I feel that the worry is becoming bothersome, I just think of all the times I sat & imagined how awful the first birthday would be & how, in fact, it was not nearly as bad as I had imagined it would be.

Kara: If you are past the first year mark, can you say anything about the longer-term? Birthdays, memorials, just the everyday things that might come up in your family or questions from the surviving twin? Or from other siblings?

Sheila: Well my daughter is 9 now and she has questions popping up here and there all the time..
On the day we lost her twin there is always something we do it honor the baby..

Tracy: We are past the first year mark…we just passed our 3rd year without her. And it is still not easy. Frankly, I don’t think it ever will be easy, it is just something you have to figure out how to deal with and continue on. There are constant reminders every day that she is gone. Especially when I watch Amelia. And even tho it has been 3 years, I recently talked to my oldest daughters dance teacher because I needed to ask her to make sure that we were in a different class than another woman and her daughter next year. The reason being, this woman just had twins and every week watching her get bigger and hearing about it was more than I could take. I truly don’t think I can handle sitting in the same room with her and her twins once a week for the next upcoming year of dance. It was ask for a different class and have the teacher accommodate me, or else go to another studio. Then, upon talking to this teacher, she told me that she is a twin and her twin brother died shortly after birth. She said she totally understood because even after all these years (she is around 28 years old), it still hurts her own mother to see twins. Again, it seems frustrating to realize that I will be dealing with this for the rest of my life. As far as talking about her in our family, in MY family (me, hubby and our kids) she is not a secret. Her name is mentioned quite often and Amelia knows she is a “twin”. My oldest draws family pictures and will usually include Amanda. We always say when we see a rainbow that it is Amanda coming to see us. Amelia asks questions and I try to answer them the best I can for her level of understanding. All of our children (aged 6, 4 and 3) know Amanda died but that she is a part of our family. I will not have it any other way. After her memorial service, we matted and framed a special poem and everything from her service and it hangs in our family room. She will not be forgotten.

Michie: My surviving twin & her younger sister both have always known about their brother & visit his grave regularily. I stress the importance of how he is a brother to BOTH of them. I don't want to give my surviving twin "issues" that she does not have. She is sensitive & I don't want her to assume that b/c it was her twin that there is a reason to harp on his death. Because my subsequent child is only 1 year younger, it seems that the siblings have the same reaction to Luke's death. Recently while visiting his grave, Levi realized that her brother has the same birthdate as her. I explained that that was because he was born on the same day, making them twins. She just smiled really big. There doesn't seem to be any issues that she has that are different from her sisters.

Kara: If there is another family out there who is dealing with grief under this same kind of circumstance, and if they are feeling very alone, what might you want to tell them or share with them?

Sheila: Just please know you are not alone. That there are others out here who are or have gone through the same thing as you have...

Tracy: If another family were in this situation I would tell them that they may feel very alone. People don’t know how to respond or what to say, and can be of very little comfort or support. Don’t take it personally, they just don’t understand. However, unfortunately, this happens more often than people think. You will have to be your own advocate. Just because others are uncomfortable because of your situation, don’t let that deter you from handling things the way you see best for you and your family. Don’t let others tell you to “move on” or to get over it. Everyone has their own time table for grief and only you know what is best for YOU. Someone told me soon after I lost Amanda that when you suffer a loss, you will have to deal with the grief. You may deal with it a week later, 6 months later, or 6 years later, but you WILL deal with it because it will not go away. And I learned that to be so true. It took me a year to start dealing with my grief and pain and to do so in a healthy manner. Also, if you feel you just can’t get through it alone, SEEK HELP. I wish I had done that sooner, but I didn’t and my entire family suffered because of it. If you need help, get it…and don’t feel that you can’t ask for help or feel embarrassed about it. I personally learned that asking for help is not a sign of weakness, it is a sign of strength. And lastly, I would say I am so very, very sorry that you have lost your child. It is inconceivable that we as parents should have to live through losing our own children, and it saddens me greatly that we are doing just that.

Michie: I would tell others to not make the twin death a big issue that is kept from the surviving twin. Both of my daughter's have responded very well to the truth & we have never hid it from them. We talk about Luke regularily & have his photos around our house. This also lets others know that he will always be a part of our family.

About the Interviewer:
Kevin Smith fan, zine creator, bookmaker, movie watcher, dreamer, tool of the peace movement, sometimes grumpy, would rather just write and never edit or publish again (but can't seem to extract herself from it!), sometimes inspired, always awed by the beautiful minds of people like Nash, advocate for bereaved parents everywhere, creator of the long forgotten Iowa GRRL, and so much more. If you have questions or comments, send email to editor@kotapress.com