Hand to Hold's Official Blog: Written by Parents for Parents

Reader story: My Little Hero

The following story is from Preemie Babies 101 reader Cecily. If you’d like to share your NICU story with us, click the Share Your Story link, or email leighann@handtohold.org.

What were the circumstances surrounding your child’s birth?

preemie, NICU, prematurity, grief, bereavement

Photo courtesy of Cecily Vermote

In 1984, I had a complicated pregnancy, placenta previa, and was on bed rest. I had two beautiful children, a son, and a daughter, and could not wait to bring a new child into our home. Unfortunately, my condition worsened, and I had to be hospitalized. I was put on magnesium sulfate to help stop the labor, and that in itself was a scary time. But the real fear came when, after a couple of weeks, my water broke and I had an emergency C-section. Brook was born weighing 3 pounds and 5 ounces, and measuring 19 inches long. He was small, but amazingly healthy, and cute as a button.

What complications, diagnoses or surgeries did you or your child face?

Brook was given E-Ferol, a vitamin supplement that bypassed proper approval. A week later he stopped digesting his food and was taken into surgery where a section of his small intestines was removed. Brook was started on antibiotics after surgery and was showing vast improvement. A week later he was strong enough to undergo surgery to fix a heart murmur, a relatively routine surgery for preemies. Both of these appeared to be successful surgeries.

During this time I was still healing from my C-Section and severe infection and was taking antibiotics. I had to undergo having sample tissue removed from my uterus (inside and out) to determine the best meds to rid my body of the infection. But my focus stayed on my baby boy. I wasn’t supposed to drive after I was released from the hospital a week after surgery, but wild horses couldn’t have kept me from my son.

At three weeks old Brook showed signs of distress and was taken back into surgery, only to find his intestines were beyond fixing. My son died in my arms the next morning.

Tell us about your child and the time you had together.

Brook was so cute. His tender cry sounded almost muted. He had enough hair to warrant two hair cuts…but mainly to give me a sample. The nurses were great and kept me up to date with everything that was going on with Brook. All of his blood gas reports and other tests. They were as excited about his improvements as I was, according to their cheerful smiles. I spent every day at the hospital holding my son’s tiny hands. I was able to reach into his plastic box and change his diapers, soothe his dry skin, and when I wasn’t telling him about his brother, sister, dog, cat, and dad, I was singing him lullabies.

How did your whole family cope with this experience?

My marriage did not survive this tragedy, which left my children, and me, grieving for their sibling and our future. My children did their best to hide their grief from me, and I from them, which left no one healed. My husband only wanted it forgotten and for us to move on.

Criminal charges were brought against the pharmaceutical company, and those responsible went to prison for their part. Years later a civil suit was brought to court, but neither brought my son back.

How are you all doing now?

It’s been over thirty years now, so, as the saying goes “time heals,” but not without the travel to get there. Every year was torture as the anniversary of Brook’s birth and death rolled around. The anticipation would bring anxiety that filled my soul with despair. I did everything possible not to show what I was going through because most people didn’t have any idea what to do for me. I didn’t know what to do for myself, and I didn’t want to bring anyone down that dark rabbit hole with me. As each year passed, I realized I made it through another anniversary, and with that came strength.

What did you learn about this experience that you’d like to pass on to others?

I want people to understand it’s okay to reach out for help. Your family is there for you. Show your grief, especially to the siblings left behind. It’s okay to cry, be angry, but know that you are not alone. Talk to someone in the mental health division while you are going through this process. After Brook died, I had a mental health professional help me. Between my children and her, I’m alive.

Regardless of the outcome, there is help to get you through the trials when your baby is in the NICU. Each improvement was joyful and brought me hope. Continue with counseling. I stopped when I thought I was expected to be better, but I wasn’t. In the end, life became a dark and frightening tunnel with flickers of light peeking that brought the hope of survival with it. Over time I finally found the light at the end. Though I carry the scars from my journey, I made it through regardless, and so have my children. They are grown with children of their own. Life’s joys are worth everything to me now.

Through this journey I realized my son never had a voice, so I have given him a voice in a book I recently wrote and published. I have always written poems, but after I retired, I started blogging and writing novels. When I thought about how healing writing was for me, I knew what I needed to do. By giving Brook a voice in my “reality/fiction” novel my healing truly began. I may not have been able to save my son, but I wanted his voice to be heard. My book, Watching Over Her was a three-year project and one I’m most proud of publishing. Not everyone in this frightening situation gets that happy moment of bringing their baby home, but finding a way to heal truly needs to be the focus for all involved. I hope it helps others feel less alone during or after their journey.

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