Twin to Twin Transfusion Syndrome Foundation Banner
International Office
411 Longbeach Parkway
Bay Village, Ohio 44140 USA
Medical Professionals Photo

Creating a Medical Plan of Action A Monochorionic Placenta What is Twin to Twin Transfusion Syndrome Monochorionic Placental Pictures Sonography and Appointment Questionaire Cervical Assessment, Nutrition and Bedrest Planning for Your Delivery When Pregnancy Continues with a Loss Medical Research and Articles History of Twin to Twin Transfusion Syndrome Placental Protocol Professional Letters of Support Quotes from Parents About Their Doctors International Registry

Help your Patient through a Compassionate Delivery

Being told that you are going to be parents of multiples (twins, triplets and beyond) is truly a blessed event. Parents feel chosen and that they are special. Many parents have struggled with infertility, and now appreciate a pregnancy with an instant family. Medical professionals need to understand that parents instantly become parents when they become pregnant. It is not something that happens magically at the birth of their babies. The emotional realization of this is very important, especially when one or more of the babies pass away. Parents have a ‘status’ of being parents of multiples and loss does not change this. Your job is to continue to instill this message to them. Our job is to instill to you, the the medical professionals that take care of them, that honoring their status of ‘parents of multiples’ is connected to the sense of Peace that the family will feel in the months, years, and lifetimes ahead of them 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 these parents of multiples will carry with them as if they were their 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.

Helping and Understanding Your Patient When Their Pregnancy Continues With A Baby Who Has Passed Away

Often in a multiple pregnancy, one or more of the babies pass away but the pregnancy continues. This is a very uniquely challenging time for the parents, especially the mother. It is very important for her to talk about what she is feeling. She may be still feeling the baby move when she knows it is not alive anymore. The baby or babies who have survived are moving the baby when they move. It is the kind of experience that they really can’t put into words, but you can encourage them to cry. Parents need to be given the permission to cry. Of course they need to continue with the pregnancy and have hope for the other baby or babies, but give them permission to grieve. The hope and strength to get through the pregnancy is there naturally. They don’t need to be told to ‘be strong’. It is healthier for the pregnancy for them to be open with their feelings. When you don’t encourage them to cry, this is the beginning of saying the “you should be grateful for the one you have” comments they will start hearing now and especially after the birth. We as women were brought up in this society not to “put up a fuss” and to be “good little girls.” With this kind of experience, parents who are given support about their loss as they continue their pregnancy can be better prepared for their delivery. The delivery and recovery should never feel to the parents like the loss “just happened”. They have been given time to plan for their delivery. This time is a gift in disguise, unfortunately brought on by a deeply sad tragedy.

When the loss happens during or just before delivery

When multiple birth loss happens during or just before delivery, the trauma is immense. Parents feel that they have gotten to the “light at the end of the tunnel”. They may have known that the pregnancy was experiencing complications, but they had made it to their 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 their life.

Medical professionals need to be aware that the shock is intense for these families. They have not had any time to take in the reality of the pregnancy. Give them time to ask questions. Give them the answers to their questions more than once. Their shock levels will change every hour. You need to talk to them repetitively, even about the same subjects. Let them cry, give them permission. Sometimes, letting parents know you don’t know the answers to their questions is OK. They may not really want to hear an answer, but just need to ask over and over because they are in shock. Most universally, the best gift that you can give the families is saying nothing at all…but shedding a tear.

Bereaved parents have repetitively told us that when they were asked if they wanted to see their babies, they felt like there must be a reason not to. Do not ask if the parents want to see their babies, just take the initiative to show them, even when there is a loss of one of the babies. This is explained further below. The message is, give the parents time with all of their babies and don’t ask if they want to see them, just do it.

The Compassionate Delivery

Give the parents a private room. Let them wash the baby or babies and have them baptized. Dress them in special outfits picked out by the parents and or wrap them in matching blankets. Take individual and group pictures. Place the babies in the mother’s arms, and take pictures. Put them in her arms, all of them, despite how early the loss, how small the baby. These are her children. This is her only opportunity for a very long time to put a lifetime of love, advice, hopes, dreams, and affection into a moment. Always ask questions to the parents more then one time and at different times. Shock changes instantaneously and frequently during and after the delivery. An answer during prepping will be different then in the recovery room, then in their private room hours later. Always ask more then once and let them see the babies more then one time. It is advised not even to ask the parents, “Do you want to see the baby?” Often, by hearing this question, parents immediately feel there might be some reason they shouldn’t. This only sets the stage for later regrets.

Don’t have music playing during the delivery.
When there is a loss before or during labor, the mother will remember the music that is playing. This music will be disturbing to her at the time and it will be a disturbing reminder of the loss when she hears it throughout her life. It is a part of traumatic stress disorder and you can protect her from this by turning the music off.

Encourage Parents to watch the delivery with the use of a mirror. This is very important to be able to witness the birth of the multiples. Even if the multiple birth loss occurred early and the baby or babies may be in the placenta, watching the placenta be delivered is still watching their baby or babies. Care must be taken, in pathology, to detach the baby from or within the placenta so the parents can hold their baby. It is stressed that it does not matter how small the baby would be, this must be done for the parents. The parents are in tremendous shock. Do not ask if they want this to be done, just do it for them. You have to realize that the sense of Peace they feel during this experience will affect the rest of their lives. Knowing that they held and saw all of their babies will give them the Peace they need and take away the ‘unknown’ which can terrorize them in their thoughts.

Medical Professionals need to keep talking to the mother and father and let them understand each part of the delivery. Talk about it before the parents get to the delivery table. The “unknown” is ten times bigger to parents, especially the mother, then the truth. Give them the education in a loving, caring, and empathetic manner. Don’t ever say that your baby won’t look like a baby. No matter how small or what the baby looks like, it is their baby and beautiful to them. These are the words you need to say. For example, “Here is your precious little baby.” The Twin to Twin Transfusion Syndrome Foundation is here to help.

When One Of The Babies Pass Away

Deliveries including both life and death are unique. Medical professionals need to talk to the parents about the delivery and when and how the parents will see all of the babies. Medical professionals need to understand that these plans must be flexible, because parents may need to change them. Parents may feel only relief when the surviving baby or babies actually “make it”. It is very common for the devastation and grief to completely 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. At this time, it is important to let the mother know that her precious baby or babies are now being born. They are not “stillborns”…they are precious babies who are being born silently. The crying will continue in the room. This time, the parents will cry for the babies. Let them cry. Let them see each baby after it is delivered so they can have a memory of their multiples. 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. Don’t try to hide this from the mother.

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 the mother can quickly see him or her, or them before they go. 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 not to have a “one baby in…one baby out” situation. This can be very confusing to them because they know they gave birth to multiples. Medical professionals often think that it is not right for parents to see life and loss at the same time. This is their reality. This is what they have to leave the hospital with and go home with. This is what they will live with for the rest of their lives…life and loss. Life and loss is an event that no one was ever meant to experience simultaneously. So, they need to see the reality, so they know that it wasn’t a dream. It really did happen to them. The reality is a nightmare come true, but it is the reality. It is healthier for them to see life and loss, because they 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 the parents spend time with their family the way they dreamed of for months, and for many…the way they 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 they deserve with their family of making precious memories and is the key to the sense of Peace they will live with forever.

When All Of The Babies Pass Away

If parents lose all of their babies, they feel the loss of a “family”. Losing one of the multiples is a loss of a family too, but losing all of the babies means there won’t be any babies brought home at all. This feeling of loss is intensified when the couple has no other children at home. Refrain from using any statements like, “At least you have other children." or "You are young, you will be able to try again.” Don’t say anything if you don’t know what to say. The best gift you can give is your tears.

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. Please trust those of us who have, and place faith in the guidelines as they gave come from the pain, healing, and hearts of those who have truly “been there”.

Important Note:
If the Labor and Delivery Floor or post partum floor does not have a 35mm camera or video camera, these would be items to asked to be purchased from either the hospital’s bereavement group or the hospital itself. Encourage the parents to bring theirs from home or borrow a friends if needed also.

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 the parents to understand that yes, they did give birth to twins or triplets or more. It is such a state of confusion for families, and pictures reaffirm what they know deep inside their hearts, but may not be strong enough to convince themselves at the time. It is your job to remind them that once a parent of twins or triplets, always a parent of twins or triplets. When they hear numerous comments about the “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 stand up for themselves and correct others. It should not have to be their job to explain that they are still the mother and father of multiples, but unfortunately it becomes necessary.

It is very emotionally draining for parents to explain, because it may bring on more unsupportive comments. So, never say anything back to them when they are talking about their babies such as they are ‘wrong’ or ‘don’t you even think to raise this baby a twin”. The more parents talk about their baby or babies, the stronger they will become. So, taking pictures will provide the parents with the reality, and they will not have to question if they are still the parents of multiples or if they ever were. It helps tremendously.

(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.

Photographing Your Patient’s Babies
Bullet Point Take pictures of all the babies individually.
Bullet Point Take pictures of all of the babies together.
Bullet Point Take pictures of them touching each other (skin to skin contact).
Bullet Point Take pictures of them holding hands.
Bullet Point Take pictures of the parents holding all of the babies in their arms.
Bullet Point Take pictures of the parents kissing the babies.
Bullet Point Take pictures of the parents holding the babies’ hands
Bullet Point Take pictures of the entire family including other children. If the 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. Parents deserve a “family portrait”. This is also true for babies that survive and have to go to the NICU. Parents can be together with all of the babies in the NICU or take pictures of their survivors to place in their portrait with their baby or babies that have passed away.
Bullet Point Take pictures of the babies wearing identical baby hats
Bullet Point Identify inside the hats which hat belongs to which baby.
Bullet Point Wrap the babies in their own baby blanket for pictures.
Bullet Point Mark which baby blanket belongs to which baby
Bullet Point Take pictures of all the babies wrapped in a single blanket. Mark this as the family blanket.
Bullet Point Have private family time alone without the caring individual taking the pictures for you.

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 more happier occasion. This is a very private time for parents, and what others think, is irrelevant. This is where you can come in and be very supportive to the parents. Let them know that their time with their babies is precious and they will always remember it even without video. But, with video they will have one more keepsake. Keepsakes will help them get through very difficult days. They will hug them on rainy days, birthdays, Easter, and Christmas morning. The more keepsakes they give themselves, the more they will have to help themselves feel a sense of Peace later. So many bereaved parents only have Polaroid’s to hold dear to their heart, and they have to worry about them fading. To prevent that, they 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 they have”. Having video takes parents 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 surviving babies when they get older. The Twin to Twin Transfusion Syndrome Foundation will help any family 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 patient’s babies. Suggestions are for all of the babies despite the outcomes or how early the losses…how small the babies. That is a realization that may be new to you and that you will truly need to understand and make happen for the parents.

Videotaping Your Patient’s Babies
Bullet Point 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 the parents up close.
Bullet Point Make sure that there is plenty of light in the room so the pictures will be clear.
Bullet Point Use the video camera to film close ups of the babies features, such as their hands, feet, fingers, toes, face, nose and so forth.
Bullet Point Have the parents talk to their children of their hopes and dreams for them.
Bullet Point Have the parents kiss their babies and tell them how much they love them and always will.
Bullet Point Have the parents tell their babies that they did everything they could for them.
Bullet Point Let the parents know that it is never good-bye, only I love you…
Bullet Point Have the parents take this time to baptize the babies and announce their babies’ names.
Bullet Point Have the babies touching the parents and each other so you can film it up close.
Bullet Point Have the parents sing to the babies.
Bullet Point Have the parents tell them a story.
Bullet Point Have the parents read to them from a special childhood book.
Bullet Point Have the parents give them a bath.
Bullet Point Have the parents brush their hair and cut off a piece of their hair to treasure.
Bullet Point Have the parents dress them in baby clothes purchased or have at home that are special to them and that they had planned to use.
Bullet Point Have the parents rock them, sway them, tell them it’s gonna be OK.

Take Footprints Of All Of The Babies On The Same Card
Make sure to put the personal names of each baby under the footprint.

Take Handprints Of All Of The Babies On The Same Card
Make sure to put the personal names of each baby under the handprint.

Take Lockets Of All Of The Babies’ Hair And Mark Each One With Their Names
The mothers may also want to cut the babies fingernails as a keepsake for each of the babies.

Give The Babies Each A Baby Bracelet For Them To Wear
Put their name on their bracelet with their status as a twin, triplet or more

Give The Mother A Baby Bracelet To Wear For Each Baby With Its Personal Name On It And Multiple Status (twin, triplet, quadruplet)
Don’t give her bracelets only for the survivors, but for all of the babies by name. If she was pregnant with triplets, and two babies survived, don’t put twins. They are triplets. Don’t take this status away from the parents or the babies. It is reality, and it is a sense of uniqueness, specialness, and pride. Make sure that the mother goes home with all of the baby bracelets with their names on them.

Give The Parents The Measuring Tape Used To measure The Baby Or Babies, And The Paper Or Blankets They Actually Laid On.
Bullet Point Identify which baby each blanket and paper .is for
Bullet Point Put weights and measurements on the same card and separately name the baby or babies.

Give The Parents The Hats And Blankets Of Each Baby In A Separate Zip-Locked Bag
Bullet Point Identify the inside of each hat and blanket with the baby’s name so these items can never get mixed up.
Bullet Point Identify the outside of each zip-locked bag.
Bullet Point The zip-locked bag will keep the smell of each baby and will appreciate the individuality and uniqueness of their babies.
Bullet Point 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.

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 remembrance box with all the babies’ keepsakes so others know that they are not to enter the box and disturb them.


Parents may have prepared their 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 tell your patient to leave everything there and let the mother put things away at her own time. The worst thing for her is to come home to everything gone or changed. It is part of her grieving that needs to be done, to change the nursery (if she even wants to) herself. Again, encourage parents to put things away when the time comes, but do not throw them away or take them back to the stores. Even with things such sympathy cards, baby clothes or other items….tell them not to 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. What is very important is that she do these things herself.

Other family members must have trust in the parents. They need to tell others “If you love me, then trust me that this is what I need from you.” Parents need others to let them deal with the nursery on their own. Parents may want to send out a birth announcement representing all their babies. Support the parents in this and what you need to do to keep their status of mother and father of twins or triplets current. Build the parents up so they are confident, in what they know in their heart anyway, not to let anyone, including family, make them feel their actions and feelings are wrong. It is the truth and the key to their Peace and health.

Parents Cannot Be Rushed.

When life and loss happen at the same time, grief overtakes joy. Don’t pressure mothers to be happy. It is normal to only feel relief and mainly sad. It does not mean they don’t love their surviving baby or babies at all!

For moms, it is possible for them to take care of their baby during such deep sadness, but they need to be a mother and learn how to take care of their baby on their own. It is a time of great self-doubt. The more they can do on their own with encouragement, the stronger and more self-confident they 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 and is OK to express.

Tell your moms, take one minute at a time. In many ways, they have to learn how to live their life over again. But, as they do, they will be bringing all of their babies with them. Learning how to do that takes a lot of time and soul searching. Remember, it is never goodbye, only I love you. Encourage them to find their own way to bring all of their babies with them.

From the Foundation

We have found from speaking with many of the mothers and families that the way your patient’s delivery is handled plays a very crucial role in the sense of Peace that they will feel in years ahead. For parents, keepsakes are more than reminders of their babies…they are tangible gifts from them. Too many statements are heard on how better off the parent’s are in some way or another for having lost their children. These statements are never true. As their self-confidence becomes stronger, they will be able to verbalize it. Having the keepsakes gives parents a place to go when they know these statements are not true, and they need to tell their babies so. On Christmas morning, the parents can hold their baby blankets up to their cheek and hold onto them in their arms. Parents can hang their footprints in a beautful frame on the wall for all to see. Parents can wear their lockets of hair in a locket around their neck. They can see their faces from their photographs and watch them on video. Parents can be with them when ever they want. This can be done regardless of any keepsakes, but they help tremendousy. If parents can’t have the lifetime of memories, they certainly deserve this much. Parents deserve them truly being here more. One day, they will truly be together again, and after they have lived a very long, long life they will go to their babies and tell them all of their 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 all of their multiple babies, and to the medical professionals to guide them in collecting keepsakes.

The Twin to Twin Transfusion Syndrome Foundation
National Office
Compassionate Deliveries
411 Longbeach Parkway
Bay Village, Ohio 44140
Phone: 800-815-9211 and 440-899-8887
Fax: 440-899-1184 Web:

The Twin to Twin Transfusion Syndrome Foundation
Compassionate Deliveries ©
Copyright December 1994-2004
All Rights Reserved

The TTTS Foundation In The News

December is International TTTS Awareness Month

FIGHT TTTS Video Awareness Campaign and lighting of candles across the world
>

Raise Donations on Facebook

This is a fantastic and easy way to support the fight against TTTS and bring help and hope to families
>


>

Learn about TAPS- MUST do MCA dopplers on all pregnancies

A form of TTTS, TAPS can occur after laser surgery or during a monochorionic pregnancy with no signs of TTTS or problems.
>

Updated List of Questions

Questions to Ask at Every Ultrasound. Ultrasounds Must Be Weekly Starting at 16 Weeks.
>
World Awareness Day - Dec. 7 2010

TTTS Walk for the babies

Official TTTS Foundation Events
Copyright © 1997-2018 The Twin To Twin Transfusion Syndrome Foundation. All Rights Reserved
411 Longbeach Parkway, Bay Village, Ohio 44140 USA | 800-815-9211 |