Being told that you are going to be parents of multiples (twins, triplets and beyond) is truly a blessed event. You feel chosen and special. You may have struggled with infertility, and so appreciated a pregnancy with an instant family. You instantly became parents when you became pregnant. It is not something that happens magically at the birth of your babies. The emotional realization of this is very important, especially when one or more of the babies pass away. You will always be parents of multiples. Instilling this message to yourselves, your family, friends and to the medical professionals that take care of you, is connected to the sense of Peace that you will feel in the months, years, and lifetimes ahead after the delivery. What takes place during the delivery is very much the key to this sense of Peace. The delivery must be compassionate. It is a time to lovingly collect the keepsakes that you will carry with you as if they were your children themselves. The gift of time, memories, and keepsakes for all the babies is on the main educational messages which encouraged the establishment of The Twin to Twin Transfusion Syndrome Foundation.
When One Of The Babies Pass Away
Deliveries including both life and loss are unique. It is important to make a ‘birth plan’ and communicate it to your doctors and nurses before the delivery including when and how you will see all of your babies. It is OK to make changes when the time comes, it is OK to be flexible. After the birth, you may only feel relief when the surviving baby or babies actually “make it”. It is very common for the devastation and grief to overtake joy. This is especially true for women who had to continue the pregnancy with a loss. Their grief is so devastating, but the depth of their grief is pushed into their subconcience in order to emotionally survive each day of the remaining pregnancy. This occurs naturally. When the moment comes that the babies are delivered, it is actually the “true” beginning of their immense devastation. It is almost like the loss occurred just then. Most likely when there are surviving babies in a multiple pregnancy, they will be delivered by c-section and will be delivered first. This means when they are delivered it will be to a room filled with joy and clapping. Then, everyone knows that the delivery is not over. Suddenly, the room becomes a room filled with a piercing silence. It is Ok to feel your emotions and ask questions about the babies being born. It is OK to cry. Ask to see each baby after it is delivered so you can have a memory of each baby being born. This can take place even if the baby or babies that have passed away are wrapped in a blanket and laid down next to each other for the remainder of the surgery. Often, if the babies are born early, parents only have a quick moment to see them before they are quickly taken to the NICU (Neo-natal Intensive Care Unit). Pictures can still be taken quickly of each baby, and you can quickly see him or her, or them before they go. You need to understand that you have rights as parents. It is OK to ask to see. Parents who experience the loss of one or more babies and have a baby or babies that survive are experiencing a great contradiction. They may have a baby, but have lost a baby that looks just the same. It is very important when in your private room, not to have a “one baby in…one baby out” situation. This can be very confusing because you know you gave birth to multiples. Medical professionals often think that it is not right for parents to see both babies at the same time..to see life and loss. But, this is the reality. This is what you have to leave the hospital with and go home with. This is what you will live with for the rest of your lives…life and loss. You were never meant to experience these two things at the same time. You need to see the reality, so you know that it wasn’t a dream. It really did happen to you. The reality is a nightmare come true, but it is the reality. It is healthier for you to see your babies together because you have to go home and live with it. We greatly emphasize the importance of seeing all of the babies for these reasons, but even more importantly, for the simple reason that you spend time with your family the way you dreamed of for months, and for many…the way you dreamed for years. It will not be the way it was meant to be or a long enough amount of time, but it will be the time with your family of making precious memories. You deserve at least that.
When The Pregnancy Continues
With A Baby Who Has Passed Away
Often in a multiple pregnancy with a monochorionic placenta, one or more of the babies may pass away. The pregnancy continues because the babies share a single placenta. This is a very uniquely challenging time for the parents, especially the mother. It is very important for you to talk about what you are feeling. You may be still feeling the baby move when you know it is not alive anymore. This happens when the baby or babies who have survived are moving your baby when they move. It is the kind of experience that you can’t really put into words, but you can cry. You need to be given the permission to cry, and I am giving it to you right now. Of course you need to continue with the pregnancy and have hope for the other baby or babies, but it is OK to grieve. It will not hurt the other baby or babies. The hope and strength is there naturally. You don’t have to ‘try’ and be strong. It is healthier for the pregnancy to be open with your feelings. Not being encouraged to cry is the beginning of the “you should be grateful for the one you have” and other hurtful comments after the birth. We as women were brought up in this society not to “put up a fuss” and to be “good little girls”. It is OK to demand rights as patients. When you have to continue with a loss, if you are given support about your loss, you can be better prepared for your delivery. The delivery and recovery should never feel to you like the loss “just happened”. You have been given time to plan for their delivery. This time is a gift in disguise, unfortunately, brought on by a deeply sad tragedy and we are so deeply sorry.
When the loss happens during or just before delivery
When multiple birth loss happens during or just before delivery, the trauma is immense. You feel that you have gotten to the “light at the end of the tunnel”. You may have known that the pregnancy was experiencing complications, but you had made it to your goal of delivery after many weeks or months of struggling. Or, the pregnancy may have been complication free. Then, all of the sudden, crisis enters your life. You need to be aware that the shock is intense. You have not had any time to take in the reality of the pregnancy. You need time to ask questions. It is OK to ask questions repetitively. You may not get answers immediately, but you will in the weeks to come. You may just need to ask over and over because you are in shock. If you are asked a question about your babies from the doctor or nurses, don’t feel that you have to give answers that are final. You can change your mind at any time. Your shock levels will change every hour. It is OK to cry, you have permission.
The Compassionate Delivery-Loss of One Baby
You need to plan for your delivery by talking with your doctor about your loss so you understand each part of the delivery. Talk about it before you get to the delivery table. The “unknown” is ten times bigger then the truth. Having to ‘go longer’ after the loss of a twin or triplet is more difficult and filled with sorrow than words could ever describe. But that time can be a time that you can think about their birth and in doing so, make plans for the delivery that will help you for a lifetime. Your fears are not real. Being with your babies will be a time you will cherish, even though it will be so very sad. It is crucial for you, your life and your marriages.
You need to ask yourselves if you want the doctors to listen to a radio during the delivery. Believe it or not, often music is played. It is such a personal and intense situation. It is OK to request that this not be done. We suggest that you think about this and give your doctors your answer before the delivery. You can always tell the nurses too.
You may watch the delivery with the use of a mirror. This is very important to be able to witness the birth of your babies. Even if your loss occurred early and the baby or babies may be in the placenta, watching the placenta be delivered is still watching your baby or babies be born. Care must be taken, in pathology, to detach the baby from or within the placenta so you can hold your baby. We know this is overwhelming for you. If the doctors have told you that your baby is attached to the placenta or absorbed into the placenta, a pathologist can compassionately work on the placenta and your baby can be brought to you. We strongly recommend that you do this so you can have a compassionate time with your baby and not regret not seeing or holding him or her. We know that the baby maybe very small, but it does not matter. These are still your children and it will be very meaningful for you and bring you peace.
Get a private room for after the delivery
You need privacy. You can spend your whole hospital stay with your baby or babies. You can also see them more than one time. You are in control of this and don’t ever listen to a nurse or medical staff that tell you otherwise. This time is crucial for you to spend with your children. This is a time to wash your baby or babies and have them baptized. Dress them in special outfits picked out by you (from home or from the hospital) and/or wrap them in matching blankets. Take individual and group pictures. Place the babies in your arms, and take pictures. Put your twins or triplets in your arms, all of them, despite how early the loss, how small the baby. These are your children. You need to see your surviving children along with your baby that has passed away. This is your only opportunity for a very long time to put a lifetime of love, advice, hopes, dreams, and affection into a moment. Shock changes instantaneously and frequently during and after the delivery. If you have given an answer to a question about your babies during prepping, your answer will be different in the recovery room, and then in your private room hours later. Always ask to see your babies more then once. Some parents feel there must be a reason not to see their babies once they are asked if they want to. There is never a reason not to see your babies. Your baby or babies are beautiful. They love you with all their heart. Not seeing them only sets the stage for later regrets.
Guidelines For Collecting Keepsakes
The Twin to Twin Transfusion Syndrome Foundation is available to help parents think about the idea of spending time with their children, the gifts they would give to them, and the keepsakes they will make to cherish forever. The following guidelines are given to help parents begin to do this, and to help medical professionals and caregivers to be sensitive to their needs and wishes. Unless you have experienced a multiple birth loss, you cannot truly understand the uniqueness of the experience. We are here to help you because we have experienced this ourselves. The following guidelines come from the pain, healing, and hearts of those who have truly “been there”.
1. Take Photographs with a 35mm camera of all the babies
Often, professionals involved in a multiple pregnancy with loss are educated on taking pictures of the baby that has passed away. They do not, however, often understand the importance for there to be pictures taken of all of the babies and not to do so with a Polaroid camera, but a 35mm for negatives and clarity. This is important for you to understand. You have to be your own advocate. Taking pictures is proof that you did give birth to twins or triplets. Something tangible for you to look at later of your beautiful children. They are very important for you to have for many reasons.
It is such a state of confusion for families. Pictures reaffirm what you know deep inside your hearts. But, often parents doubt their status as parents of twins or parents of triplets since they had a loss. Am I still the mother of twins or triplets? Of course you are. But, when numerous comments are made about your “baby” or the “twins” when it is really the “twin” baby or the “triplet” babies, it is difficult for parents to have the confidence to explain the reality of their birth. It can be difficult to voice out loud and to others that your parental status has not changed because of the loss. It should not have to be our job to explain ourselves, but unfortunately it becomes necessary. It is very emotionally draining for parents to explain our unique birth and loss of our babies, because it may bring on more unsupportive comments from others. It is important to start right at the delivery in letting it be clear that you are still the parents of multiples and that your delivery will represent that. You will be gathering keepsakes for all of your babies and taking pictures. Tell your nurses and doctors you want to see all of your babies together. You have every right to do so.
The more parents talk about their baby or babies that have passed away, the stronger they will become in their self-esteem and in their confidence to continue their lives with Peace. Taking pictures will provide you with the reality that you are the parents of multiples, and you will not have to question if you still are or if you ever were. It helps tremendously.
You have waited months to see and hold your babies. By not treating the delivery and recovery respecting this fact, a stage is being set for you to believe your status has been taken away from you. Being parents of multiples will never change…it is a bond with your babies that can never be broken. The nicest thing said to one mother whose donor twin passed away, “There is nothing that did, can or ever will change the bond between a mommy and her babies. You will always be as one.” Getting keepsakes for all of your babies confirms that yes, you are the parents of twins, or yes, you are the parents of triplets…and your babies love you and are truly precious.
(Special Note) Pictures
Will Benefit The Surviving Children
Taking pictures of all of the babies also benefits the surviving babies. Survivors of multiple pregnancies always know that they are a twin or a triplet. If they were never told that they are, they would still know. Studies have shown that in pre-school when survivors were asked to draw a picture of themselves they drew a picture of two people or a pictures of one with parts of them missing. This happens even if they were never told that they are a twin. They feel a sense of loss. By telling them, what they already know, parents set forth an environment of pride in their child in the special bond with their twin and in the status of being a multiple. Not telling them makes the truth build up to something so big that it takes on the form of a secret. When the child learns of the truth, they will probably blame themselves. They must have done something wrong or otherwise they would have been told. Being a twin or triplet is very special. The surviving children will help the parents so much once they have been told. You will all grow together from keeping the truth an open subject and a sense of pride. One mother told her surviving twin, “we miss your brother so very much and we are so happy that you are here, here with us. One day, after we have lived a long, long, long life and have done so many fun and important things in our lives, we too will go to Heaven. It is important to live long and be happy so when we do go to Heaven, we will tell your brother all of our stories. And, do you know what he will say? He will say, I know…I remember…I was right there with you.” The following are guidelines we suggest in the photography of your babies.
Photographs to Take:
pictures of all the babies individually.
Take pictures of all of the babies together.
Take pictures of them touching each other (skin to skin contact).
Take pictures of them holding hands.
Take pictures of you holding all of the babies in your arms.
Take pictures of you kissing your babies.
Take pictures of you holding your babies’ hands
Take pictures of the entire family including other children. If your children are not present, which we strongly encourage that they be, use a photograph of your children to lay on the blanket and be part of the picture. You deserve a “family portrait”. This is also true for babies that survive and have to go to the NICU. You can be together with all of your babies in the NICU or take pictures of your survivors to place in their portrait with their twin or triplet that have passed away.
Take pictures of your babies wearing identical baby hats
Identify inside the hats which hat belongs to which baby.
Wrap your babies in their own baby blanket for pictures.
Mark which baby blanket belongs to which baby
Take pictures of all your babies wrapped in a single blanket. Mark this as the family blanket.
Have private family time alone without the caring individual helping to take the pictures for you.
2. Film The Time With The Babies With A Video Camera
What is most painful for parents after the loss in a multiple pregnancy, in time, becomes what they treasure and cherish most. Many would not think to video this time with their babies, that this is behavior meant for a happier occasion. But, this is a very private time for parents. What others think, is irrelevant. Your time with your babies is precious and you will always remember it even without video. But, with video you will have one more keepsake. Keepsakes will help you get through very difficult days. You will hug them on rainy days, birthdays, Easter, and Christmas morning. The more keepsakes you give yourself, the more you will have to help yourself feel a sense of Peace later. So many of us have only Polaroid’s to hold dear to our heart, and we have to worry about them fading. To prevent that, we somehow have to take them to a photo lab and have them made into negatives. It is a very painful and scary process for fear that the pictures might be lost or damaged and that is “all that we have”. Having video takes you right back to the intense emotions and love. Those emotions will be there without a video, but having it is a very precious gift. It is also very helpful and important to show the survivors when they get older. The Twin to Twin Transfusion Syndrome Foundation will help any families who would like to have video taping done for them in a quiet, loving manner with experienced members of our organization who have also lost children in a multiple pregnancy. The following are guidelines we suggest in the video taping of your babies. Suggestions are for all of the babies despite the outcomes or how early the losses…how small the babies.
Videotaping Your Babies
Have the video placed on a tripod so time together with the babies can take place, then take it off of the tripod to film the babies and yourselves up close.
Make sure that there is plenty of light in the room so the pictures will be clear.
Use the video camera to film close ups of the babies features, such as their hands, feet, fingers, toes, face, nose and so forth.
Talk to your children of your hopes and dreams for them.
Kiss your babies and tell them how much you love them and always will.
Tell your babies that you did everything you could for them.
Let them know that it isn’t good-bye, only I love you…
Take this time to baptize the babies and announce their names.
Have the babies touching you and each other so you can film it up close.
Sing to the babies.
Tell them a story.
Read to them from a special childhood book.
Give them a bath.
· Brush their hair, cut off a piece of their hair to treasure.
Dress them in baby clothes you had purchased or have at home that are special to you and that you had planned to use.
Rock them, sway them, tell them it’s gonna be OK.
3. Take Footprints Of All Of The Babies On The Same Card
Make sure to put the personal names of each baby under the footprint.
4. Take Handprints Of All Of The Babies On The Same Card
Make sure to put the personal names of each baby under the handprint.
5. Take Lockets Of All Of The Babies’ Hair And Mark Each One With Their Names
You may also want to cut your babies fingernails as a keepsake for each of your babies.
6. Give The Babies Baby Bracelets To Wear With Their Name On It And That They Are A Twin, Triplet Or Beyond
7. Give The
Mother A Baby Bracelet To Wear For Each Of Your Babies With Its’
Personal Name On It And Multiple Status (twin, triplet, quadruplet)
You don’t want bracelets only for the survivors, but for all of your babies by name. If you were pregnant with triplets, and two babies survived, don’t put twins. They are triplets. Don’t take this status away from yourself or the babies. It is reality, and it is a sense of uniqueness, specialness, and pride. Don’t let a nurse do it either. Make sure that you go home with all of your baby bracelets with your babies’ names on them.
8. Use Measuring Tape To Measure Your Babies, And The Paper Or Blankets They Actually Laid On.
Identify which baby each blanket or paper was for. Put weights and measurements on the same card and separately name the baby or babies.
9. Get The Hats And Blankets Of Each Of Your Babies In A Separate Zip-Locked Bag
Identify the inside of each hat and blanket with your baby’s name so these items can never get mixed up.
Identify the outside of each zip-locked bag.
The zip-locked bag will keep the smell of your baby. Do this for each baby whether it has lived or been born silently. Do this regardless of how young the baby was when it passed away or how small it is.
10. All Of The Keepsakes Need To Be Placed In A Very Special Box To Be Taken Home And Marked PRIVATE
“Private” should be marked on the box so others know that they are not to enter the box and disturb the keepsakes.
11. PLEASE DO NOT THROW ANYTHING AWAY.
You may have prepared your nursery for two or three babies and have everything in place. Husbands or other family often feel an urgency to give everything away or take it back to the stores. You need to leave everything there and let the mother put things away at her own time. Again, put things away, but do not throw them away or take them back to the stores. Even with things such sympathy cards, baby clothes or other items….do not throw them away, but simply put them away. It is much healthier for the mother to come home to her house the way she left it before the delivery. In time, she will put things away or return them to stores. What is very important is that she do these things herself.
Other family members must have trust in you. Tell them, “If you love me, then trust me that this is what I need from you.” You need them to let you deal with the nursery on your own. You need them to let you send out a birth announcement representing all your babies. You need to do, what you need to do to keep your status of mother and father of twins or triplets and don’t let anyone, including family, make you feel it is wrong. It is the truth and the key to your Peace and health.
12. You Cannot Be Rushed.
Grief overtakes joy when life and loss occur at the same time. For moms, it is possible to take care of your baby during such deep sadness, but you need to be a mother and learn how to take care of your baby on your own. It is a time of great self-doubt. The more you can do on your own with encouragement, the stronger and more self-confident you will become. All mothers who have experienced loss in a multiple pregnancy need to give themselves permission to let out that painful, longing cry for their babies. It is there.
Moms, take one minute at a time. In many ways, you have to learn how to live your life over again. But, as you do, you will be bringing all of your babies with you. Learning how to do that takes a lot of time and soul searching. Remember, it is never goodbye, only I love you. Find your own way to bring all of your babies with you. I believe in you and know you can do this.
From the Foundation
We have found from speaking with many of the mothers and families that the way your delivery is handled plays a very crucial role in the sense of Peace that you will feel in years ahead. Keepsakes are more than reminders of our babies…they are tangible gifts from them to us. Too many insane statements are heard on how better off we are in some way or another for having lost our children. We know these statements are not true. As our self-confidence becomes stronger, we will verbalize it. You just have to take a deep breath and start. Having the keepsakes gives us a place to go when we know these statements are not true, and we need to tell our babies so. On Christmas morning, we can hold their baby blankets up to our cheek and hold onto them in our arms. We can hang their footprints in a beautiful frame on the wall for all to see. We can wear their lockets of hair in a locket around our neck. We can see their faces from their photographs and watch them on video. We can be with them whenever we want. This can be done regardless of any keepsakes, but they help tremendously. If we can’t have the lifetime of memories, we certainly deserve this much. We deserve them truly being here more. Remember, one day, we will truly be together again. After we have lived a very long, long life we will go to them and tell them all of our stories. Do you know what they will say? “I know mommy…I remember, I was there.”
We hope that this booklet will be a source of comfort to families experiencing the loss of one or more of their multiple babies, and to the medical professionals to guide them in collecting keepsakes.
The Twin to
Twin Transfusion Syndrome Foundation
411 Longbeach Parkway
Bay Village, Ohio 44140
Phone: 800-815-9211 and 440-899-8887
©The Twin to
Twin Transfusion Syndrome Foundation
Copyright December 1994-2004
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