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Loss of One

Loss of one

A Letter to Parents

When you learn you are pregnant with twins, it is such a blessed moment in your life. You feel so fortunate and chosen by God to have such a special gift. You dream of holding two babies, dressing them the same and watching them grow up together. This is what God intended. God did not make a perfect world though. There is evil in this world and one form of it is a disease called twin to twin transfusion syndrome. It does not care who it hurts, and it always happens to the parents who want and love their babies so very much.

When parents learn that one of their babies has passed away, life will never be the same again. There is deep sorrow and shock. There is confusion about whether or not to deliver the babies. There is no reason to deliver the babies, unless the surviving baby is in major distress. There is a risk that the living baby may bleed blood to his or her twin, through the connecting blood vessels in their shared placenta that caused the twin to twin transfusion syndrome in the first place. If this happened, it was instantaneous at the time of the loss and already happened by the time you determined the loss. Delivering the babies, as many doctors think should happen, will not prevent it. It is better to stay pregnant and get to a gestational age to best help your surviving baby.

There is a period of about 2 weeks where if there are no signs of distress with the surviving baby then this “bleeding” in laymen’s terms, most likely did not happen. You should feel confident that your baby should be OK. Nothing will take away your fears completely until you deliver and the pregnancy is finally over and you hear your baby crying. But, let this give you a true understanding of hope that he or she will be just fine. You should also be getting blood work done to make sure your blood clotting mechanisms are working correctly within your own blood supply. This is a small risk, but one that should not be ignored.

When one of your babies has passed away, you will often hear hurtful comments such as, “They were not meant to be”, “You could not have handled both”, “God needed him or her more”, “He or she was too sick to survive…..” All of these statements are not true. Your baby is a beautiful, healthy baby. It is just that the disease took its toll. Your baby will always be your baby and they will always be twins. It is not they “were” twins…it is that they always will be. You will always be the parent of twins too. The status will never be taken away from you and you should stay strong not to let anyone try to. The more you can speak up for yourself and your babies when these comments are made, the better you will feel about yourself.

Many will advise that you have to be “strong” for the other baby now…that you cannot fall apart or cry. This too, is not true. You don’t have to be strong. You don’t have to be anything. You will be strong regardless of trying to. It is OK to cry and even be hysterical. It will not hurt your second little baby.  It is so important to not give gifts back, do not return items to the store, do not throw things away.  Put things away in a box marked “Private” or a closet, but never give them back.  What is painful to you now, will become what you cherish most in years to come.  Please trust us on this.

Know that when your baby passed away, his or her twin had his arms around your baby. And, you had your arms around them both. You always will.

Know that we are here to talk with you, especially listen and cry with you. You are not alone. We are here to help you continue on in your pregnancy and plan for your compassionate delivery of your babies. Please know that God did not make this happen. God wants all babies to live. His hand will be in yours. Even if you pull your hand away…He will not let go. And when you can no longer stand, He will carry you.

Your babies love you with all their heart. They know that you have done and are doing everything you can for them. The only emotion that they feel is love for you, and they will always be with you. They will help you get through this and you will live your life bringing both of them with you. It will never be good-bye…only I love you.

 

“This just happens. It’s nothing you or your husband could have predicted or done differently to avoid.”
Paso Robles, CA
Paso Robles, CA

BEREAVEMENT

When Your Pregnancy Continues with a Loss

We are so deeply sorry for your loss. Twin to twin transfusion syndrome is such an evil disease. It does not care who it hurts and only affects those that want their babies more than anything in the world. We want you to know that we will never stop fighting it and we will honor your babies in doing so.

No one was ever meant to experience life and loss at the same time. They are two emotions that completely contradict each other. It is very normal for many mothers not to feel joy when their surviving baby is OK, but relief. The joy is there of course, but grief for his or her twin overtakes joy. It is OK to cry and feel the deep sorrow even though you have a baby to care for. You may have your baby in the NICU and not even home yet. Your fear and feelings may be towards that child. When you bring that baby home, you will see your feelings gravitate back to your baby that passed away. Your feelings are going to be all over the place and that is normal and OK. You are not going crazy.

Everyone in the Foundation has experienced twin to twin transfusion syndrome with all different outcomes. Those of us that have experienced the loss of one of our twins or triplets, are ready to talk with you and let you know you are not alone. Maybe you are feeling guilty, don’t know how to celebrate their birthday, or don’t know what to say back to those that so hurtfully say, “At least you have one.” Maybe you just can’t get out of bed in the morning and you need to know that ‘neither could we’.  We have been there and can help you. You are not alone.

The Twin to Twin Transfusion Syndrome Foundation has a very supportive bereavement packet that we can send to you that has been made from parents know your sorrow because they have lived it. They want to help you. Included in the packet are booklets about anger, father’s grief, stress on marriages, how to get through holidays, how the mom can best help herself, poems, and more.  Please contact us to join our private support group on Facebook.

 

You are Still a Mother of Twins

How Am I Going To Do This? God Will Carry You

The Lord will never leave us
nor forsake us
He promised He’d be with us through it all.
It often seems He’s walking right beside us,
As he guides us through our problems
large and small.
But, there are times we just can’t feel His presence,
When the road’s so rough,
we need Him all the more. 

We wonder why we’re so alone and helpless,
Why His hand’s not there to lead us as before..But if we listen quietly, He’ll tell us,

“Take a moment and remember what I said:
If you fail to see me walking right beside you,
It’s because I have you in my arms instead,
For together, we will cross the highest mountain,
Together we will face the stormy sea,
You never are alone, you’re never helpless! 
I’ll carry you,
let go and lean on me.”

He is with you…even in this time of sorrow
too deep for words.

BEREAVEMENT

It Is About How You Walk Away

We have all been there when you gather all the strength you have to go outside only to have someone approach you and ask you, “How old is your baby?’ This is the most painful question because it should be “How old are your babies?” Sometimes the scenario is slightly different but it always comes on quickly and out of the blue.

The best answer is, “My twins were born 4 months ago”, or however the time. Bringing up both of your babies does set you up to most likely hear the “At least you have one” statement, but you need to care more about how you walk away from this situation then the other person. If you answer the way we suggest, you will be proud of yourself that you stood up for your baby that passed away.

If you don’t, you will most likely hate yourself and take 3 days to work through it. Why live for strangers, or even for our closest family and friends. They have not been through this. If they say, “At least you have one” say that is hurtful. Of course I am grateful for my baby, but he lost his brother or she lost her sister and they are important too.

Tell them, just to say they are sorry. Unfortunately, we have to teach others how to help us. Remember, stand up for yourself and your babies. Keep their twinship because that is the reality.

You are Still a Mother of Twins

A Mother’s Love, by KLS

I didn’t have to look into your eyes
to fall in love with you.
I didn’t need to hear you cry
to know you loved me too.
I didn’t need to hold your hand
to cherish you for always.
Within my womb, we shared our hearts.
You touched my soul.
You sweetened my spirit.
You gave me memories I’ll always hold dear.
Yes. My heart aches since you departed too soon.
But a mother’s love does not end with death.
For you are my child.
Forever my love is yours.

Play Video

The Prayer, sung by Father and Daughter Matt and Savanna

The Lord will never leave us nor forsake us
He promised He’d be with us through it all.
It often seems He’s walking right beside us,

As he guides us through our problems large and small.
But, there are times we just can’t feel His presence,
When the road’s so rough, we need Him all the more. 

We wonder why we’re so alone and helpless,
Why His hand’s not there to lead us as before..But if we listen quietly, He’ll tell us,

“Take a moment and remember what I said:
If you fail to see me walking right beside you,
It’s because I have you in my arms instead,
For together, we will cross the highest mountain,
Together we will face the stormy sea,
You never are alone, you’re never helpless!
I’ll carry you,
let go and lean on me.”

He is with you…even in this time of sorrow
too deep for words.

Twin to Twin Transfusion Syndrome is a powerful disease, but it's not stronger than a mother's love.

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