loss of a multiple, loss of a twin in the NICU

No one understands the pain of losing a pregnancy or an infant like someone who has been there. But there is also a specific set of parents who have endured the pain of losing one or more children in a multiple birth in the NICU. These families are faced with a unique situation: grieving the loss of one or more children while returning to the NICU day after day to support the surviving siblings.

Bereaved parents in the Hand to Hold community were kind enough to share their stories with us of losing one or more children in a multiple birth – stories of loss, of grief, of healing, and of hope. By sharing their stories, they can help bring solace to other parents in this unimaginable situation, reminding them that they are not alone.

 

“I whisper ‘another day’ to her every night when I put her in bed. I am thankful for another day. Another day my heart yearns to hold two, another day I made it through without breaking, another day of learning to understand and move forward.” -Amber M.

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“I felt I did not have the right to mourn baby David properly because I had no right to be sad, because my girls were alive and doing okay. And I also felt I could not be happy for the girls’ birth because baby David had just passed. So confusing and agonizing!

Most of the time during our life, we can’t remember details of an interaction. During a NICU stay, those moments and people, are frozen and you will remember some of them forever. These people really make a difference in your life.  -Aline F.

butterfly project, purple butterfly project, hand to hold, NICU butterfly project

“Although the pain was something I never thought I could handle, I still had to be there and be strong for our other baby. You see people with multiples and it aches, just a little less as time goes by. You have people ask you, ‘Is this your only child or first child?’ and you hurt. 

“The worst thing was hearing people make statements like, ‘At least you have another baby,’ or ‘When are you going to try for another baby?’ Or even ‘God makes no mistakes.’ At some point you check out of your family and friends, as they have no idea what to say or do, and you really just don’t want to hear another inspiring word. 

“Realize that people process grief and pain differently. Get to know the other NICU parents or ask the social worker to connect you with a parent in your NICU going through the same thing.” -Shon

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“Our world revolved around visiting Zach and slowly taking in our loss as I recovered from giving birth. Returning to the NICU was very difficult. One night after Blake died, a new nurse asked where our Baby B was if this is Baby A. It was an innocent question, but it was very hard to articulate when it was so raw.

“We always acknowledged Blake as a part of our family, and we always made room for our kids to ask questions and talk about it. Zach always knew he is a surviving twin. On his birthday it is always noted that Blake was born that day too. When we had other children, they also knew Blake was a part of our family who lives in heaven. -Susan R.

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“Emma spent 100 days in the same room that she and Oliver shared in the NICU. It was bittersweet to have to walk into that same room each day. Her roommates were almost always sets of twins. It was rough watching the parents hold their twins together for the first time, feeding them, watching them go home before us because they were born so much later than my Emma was. 

“When they moved her out of that room, I was devastated. It was the last place they were together; I didn’t want her moved. But in a way, it made it easier to visit her.

“I get the most comfort from sharing our story and finding others who have suffered a similar loss. It helps me to give them support and being almost nine years out from my loss, to give hope that they can survive this.

“Oliver is still very much a part of our family. After three long years of praying, we decided to have another baby. Josiah was born at 28 weeks. He spent 60 days in the NICU. It was almost worse being back there, because I knew too much. It was also like coming home.” –Daree B.

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“Being completely destroyed inside and having to remain positive and hopeful for the surviving child while slowly mourning is an emotional skill learned, honed and perfected. Staff and family help in the process but ultimately, one clings to all that’s happening to the baby being treated, and emotional development is proportional to the baby’s progress.” –Pedro L.

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“We were blessed to have an amazing caregiving team who were thoughtful to our emotional state and did all they could to keep sore spots out of sight. Having another son fighting for his life, it honestly felt like we couldn’t take a breath until the very end.

“Try not to focus on the why, because there is no hope or peace there. You don’t love your surviving twin any less because you have great sorrow for your twin who passed. It’s nothing you did to cause this nor anything you could have done to prevent it. You don’t have to ‘be strong.” Don’t put unnecessary and sometimes unrealistic pressure on yourself through this journey.” – Jacob A.

the butterfly project, purple butterfly project, neonatal butterfly project, hand to hold

“Having Cruz in the NICU made it really hard to go through the grieving process. With the help of Hand to Hold, I felt comfortable in speaking and voicing my feelings with the Hand to Hold Family Support Specialist, Suzy, and other moms. It was those small conversations that began to grow and I knew I wasn’t fully alone. Meeting other moms was also super important because everyone had their own story, even previous loss.

 

“Your heart is never prepared for the amount of loss you just experienced. There might be days that bring you back to that fear, that guilt, but remember you are not alone.” -Valerie R.

 


 

purple butterfly project, hand to hold butterfly projectHand to Hold is honored to help NICU staff and families recognize the loss of a multiple birth with The Butterfly Project decals and cards. Learn more about the project and how to order The Butterfly Project decals for your NICU.

This page's content was last updated on Oct 26, 2020 @ 2:49 pm