Preemie Story – April 2023

Christina Gagnon, Adult Preemie and Author

Preemie: Christina Gagnon
Gestation at Birth: 25 weeks
Days in the NICU: 212 Days
Parents: Joyce & James Gagnon

Preemie Story:

I came into this world in the Fall of 1986, from a hole in the placenta. The ultrasound looked all over for the placenta & saw that it was placed in the back. During the time, my mom had no idea I was a twin, but my twin was just cells not even considered a fetus. Very sadly he died as I was the strongest of the two leading to a miscarriage for my mom. My mom had no idea I was a girl, so it turned out to be a surprise to her in the end as she was under general anesthesia. I was born at 25 weeks weighing in at 1 lb. 8 oz. with a 14% chance of living, being a product of trial and error in 1986.

After defying all the odds as a preemie, I battled with NEC 3 x’s, Collapsed lungs 44 x’s, BPD, ROP/RLF ( the disease fixed itself, as I can see with glasses. There is no evidence of the disease ever existing) open heart surgery at 2 weeks for a benign heart murmur, asthma, getting multiple heel sticks, having to lose all of my toes in my left foot to gangrene from a blood clot that traveled through my body from an infected IV. To blood drawn and tubes all round my miniature body. And last, facing death multiple times by cheating it. Here I am as an adult and I want to tell everyone my whole story.

My survival at birth was only the beginning. My youth was sad, upsetting, and terrifying. Mountains of odds against me still had to be climbed. I needed to have major surgery done at age 5 due to a keloid on my right anterior thigh. Every time I grew, blood would come out. If not, I would hemorrhage and die. This made my parents have a tough decision to make and have the surgery done. After the surgery was completed, it led to PTSD, and countless doctors visits. I felt and was treated differently my entire life. I spent a great deal of my childhood feeling angry, confused, being unsure of how to fit the pieces of life together. But somehow, I fought through, just the same. I look back sometimes and I am amazed at myself knowing that love has been the common thread and that I’m still evolving .

Recently, I was diagnosed with a highly rare cardiovascular disease called IVC Occlusion. My IVC filter is stuck with skin tissue. No one knows how far the scar tissue is embedded into me, but I’m not able to have children or surgeries. If I do, I will die. My cardiologist was blown away by how I’m still alive and well functioning as I’m 1 of 5 people in the whole world that has this disease living the longest. This also contributes to having severe varicose veins ever since I was a teenager, along with battling Raynaud’s Syndrome.

I’ve written a book called “DON’T EXPECT MUCH FROM THIS CHILD”: THE LIFE OF A MICRO-PREEMIE SURVIVOR STORY” It’s a nonfiction narrative autobiography. A story of triumph over catastrophic odds. Living life on my own terms in spite of my challenges, not despite them.

My parents were always by my side, learned how to take care of a fragile body, how to care for me before and after discharge, how to speak “medicalese” and how to navigate some detached medical staff and so much more. At discharge, my mom made a firm decision that I was going to have a functional life. Ironically, I now live with my parents and care for my mom.

With most stories about micro preemies or preemies in general, they’re usually from the parents’ perspective in a magazine article or quick announcement on the show, ‘Good Morning America’. There never has been an in-depth memoir coming from the patient as an adult and I want to change that.

Over the years, I’ve become in close contact with my NICU doctors and nurses. I’ve even gotten the chance to attend a NICU physician’s retirement party as a surprise for her. I was the only patient present in the banquet hall besides being gathered around many accomplished physicians, making a guest of honor speech. Many were happy to see me, how fondly they remembered me and how I’ve made remarkable progress.
NICU physicians and nurses never ever get the opportunity to see how far any of their patients have come. This was the loveliest moment for me, knowing how I’d been so cared for by hundreds.

Advice for Preemie Parents:

I want the parents to be with the doctors and nurses constantly like my mother was. Don’t be nervous to ask thousands of questions. Speak up. My mom learned to speak medical terminology to doctors and nurses even when some found it threatening. Continue to do it until they get sick of you. Start by writing down many, many notes in a notebook or phone. Be with your child in the NICU 24/7. It’s exhausting emotionally and physically but you will get through it. My mom was ALWAYS with me. Never once took the time for herself. She kicked postpartum depression to the curb, not needing to be bothered with it. I was more important than postpartum. She also had the time to be a wife and take care of my 4 year old sister. Fight through it. Be strong for your baby, they’re not fighting alone. Fight through the war together.

Christina today:

36 years old. I’ve battled so much, including a mild form of COVID.