Home > Preemie Parent Mentors > Preemie Parent Mentors > Premature Baby Loss

Parent Support for Loss of a Premature Infant

Meet Ashley, Preemie Parent Mentor

My preemie(s) was born at: 23 weeks, 6 days
Days spent in the NICU: 3
Current age of preemie(s): N/A
Parent of Multiples: No
Our NICU Journey included: Incompetent cervix in pregnancy, pneumothorax, respiratory support, preemie loss, dying with dignity, grief & rebuilding.

My micro-preemie, Gavin, was born at 23 weeks, 6 days gestation in August of 2011 after a very complicated and difficult pregnancy. He survived for two and a half days but ultimately lost his battle with pneumothoraces. To watch the beginning of your child’s life collide with the end of it is unimaginable to most and I will never be the same, but my son’s life – every minute of it – was beautiful and I am so proud to be his mom. I will never forget the NICU staff. In the chaos, they were the voice of reason. They guided me through every step of Gavin’s last hours, encouraged me to make memories, take pictures, love him, and spend time with him. They helped us navigate impossible decisions and they filled the most difficult moment of our lives with incredible grace and beauty.

Since that time, I have learned a lot about love, loss, and picking up the pieces. I’ve also spent a lot of time talking with other parents who, like me, have lost children. Three pieces of advice stand out:

  • After loss, memories and preserving them become the highest priority. Pictures, videos, hand and footprints, hair clippings, clothes your baby wore, blankets and other keepsakes should find a special place in your home. There will come a day that you will find great peace in them.
  • Open your hearts to people who want to help, who speak your child’s name, who cry with you, and who love you without condition. It is perfectly okay to say no. It is okay to set boundaries and honor those boundaries. Do whatever feels right for you and your family because regardless of what people say, there is no time limit on grief.
  • If given the opportunity, take some time to reconnect with the people who were involved in your child’s care. Thank them, ask them questions, and share your child’s memory with them.

It takes so much strength and courage to reach out and ask for help. In the beginning, it was something I struggled to do myself. But now I recognize the need parents have to talk about their experiences in the NICU, their losses, and how life is even possible after extraordinary grief. It is my hope that as a Graham’s Foundation Parent Mentor, I can provide other parents with comfort and support and help make each day a little easier.

Losing a Premature Baby

Having to say goodbye to a preemie far too soon is a tragedy that no parent should ever have to face, but sadly loss is a part of the prematurity journey, too. Nothing can ever ease the pain of losing a child but even so, many organizations, websites, and groups exist to help moms and dads cope.