Support for Coping with the Loss of a Child with Turner Syndrome

     First, you should know that losing a child to Turner Syndrome during pregnancy is more common than having a child survive with Turner Syndrome. There is no known cause for this condition and losing your child is not your fault—Turner Syndrome cannot be prevented. Turner Syndrome is a spontaneous and random error that leads to a missing X-chromosome in the sperm or egg of a parent. There is nothing a father or mother could do to prevent this error, so please, do not for a second think you or your partner are to blame.

     Our advice to help you find peace and healing is to live one day at a time. Time may never fully heal your pain, but it can help you get back to a more familiar place where you feel like you again. Acknowledge the fact that you are still a mother or father. You are still a parent; you will always be for the rest of your life, even if you do not have any other children. It is very difficult to absorb this loss, but validate yourself and this process.  You are not a bad parent because you lost your child to Turner Syndrome. It was a spontaneous loss – it just happened. Though she lived with you for but a moment, she is still your daughter.

     Today, we still do not fully understand all that needs to be known about Turner Syndrome. It is totally and completely unfair, yet thousands upon thousands of families find themselves in this position every year. These are not forgotten children. They lived among us and they will always be remembered for they touched us briefly and their love remains.

Here is what we do know:

• About 1-3% of pregnancies in which the fetus is diagnosed with Turner Syndrome result in live birth; these babies are miracles, defying all odds.
• 15% of confirmed pregnancies that end in miscarriage are babies with Turner Syndrome

     You may be wondering where to go or what to do next, and the best advice is to let yourself feel your loss, turn to your loved ones for support, and release your emotions fully. Just breathe. Be patient with yourself and seek counseling if you feel like you need to get help. In time, you may find a newfound strength to endure. Until then, do not feel guilty for smiling or laughing, spending time with friends, or reflecting on memories. All of these things are the best remedy for the most difficult times.

Turner Syndrome Foundation is Dedicated to this Cause

“There is no footprint too small to leave an imprint on this world.”

       RESEARCH:        Join the Turner Syndrome Foundation patient registry.
     VOLUNTEER:        Give back to others as a volunteer. Join a walk, host an event and raise awareness for Turner Syndrome.
  SHARE STORY:       Share your personal story with a tribute page in memory of your child. 
                                               
                                                         

                                                          Setup a Memorial Donation Page

"There is no greater agony than bearing an untold story inside you." – Maya Angelou

Additional Resources that Can Help Guide You and Your Family Through this Time

 RAISE AWARENESS:    Awareness begins with you. Your story can help others and influence support for this Cause.
        GET INVOLVED:    Volunteer, participate in a marathon, table at a health fair, donate in your daughter’s name. 
                                     And if you do not know where to begin, we can get you started.

Resources for Family Members and Friends

If you are here because your friend or family member lost their daughter to Turner Syndrome, we are here to help you, too. Losing a child is devastating for parents. They not only lose their child but the hopes and dreams they had for her as well. Understand that nothing you do will make things easier, but offering your support shows your loved one that you care about what they are going through. Accept that this may change your relationship with your loved one but be forgiving and patient, and remember they are going through unimaginable pain. You probably want to support your loved one, but figuring out how can often be a struggle. Below is a list of some ways you can show your support and honor a lost child.

When a loved one loses a baby…

• Be there for them
• Remember important dates – let them know their child is not forgotten
• Continuously check in
• Listen
• Help in practical ways – run simple errands for them or ask what you can do
• Do something to honor their child – this does not have to be grand or expensive. Plant a flower, release a balloon or send a TSF Memorial Card
• Remember an “I’m sorry” goes a long way

"Do not judge the bereaved mother. She comes in many forms.  She is breathing, but she is dying.  She may look young, but inside she has become ancient. She smiles, but her heart sobs.  She walks, she talks, she cooks, she cleans, she works, she is, but she is not, all at once.   She is here, but part of her is elsewhere for eternity."
 

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