‘The doctor said, ‘If she’s born, she will look scary and be a burden.’ My husband questioned my choice. I decided to walk this path alone.’: Woman births baby with Edward’s Syndrome, ‘Every moment is the greatest gift’

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“‘Hello?’ I answered the phone, recognizing the phone number of my OB office. I can’t tell you how the rest of the conversation went because I was absolutely in shock.

At 11 weeks pregnant, my baby was diagnosed with a rare chromosomal disorder called Trisomy 18, or Edward’s Syndrome. Similar to how Down syndrome is an extra copy of the 21st chromosome, Edward’s Syndrome is characterized by the extra copy of an 18th chromosome. However, unlike Down syndrome, Trisomy 18 is said to be ‘incompatible with life.’

When we received the official diagnosis, I was encouraged to terminate the pregnancy and was told if born, she would look scary and would be a burden on our family. My husband agreed with the doctor and while I refused to terminate, my husband questioned my decision. We had lost our other baby girl, Ellis, 6 months earlier, and we weren’t exactly on the same page about raising a child with special needs.

Soon after I decided to move forward with our daughter’s care, our marriage ended, and I decided to walk this path alone.

I started talking to my 4-year-old about her sister’s condition and how while I hoped we would be able to meet her, only 50% of babies with her condition are born alive. We started making memories with our baby girl right away, even though she wasn’t even born yet. Christmas presents under the tree, clearing out a closet for her, my best friend even threw baby Charlotte an incredible baby shower. Strangers on the internet got wind of Charlotte’s story and started reaching out to learn more about her, my pregnancy, and how they could help. Through social media, I heard of a hospital in my state that had teams who worked with babies with my daughter’s condition and had a much higher survival rate than the rest of the country. It was very apparent our girl was beyond loved, not only by us but by the world around us.

My pregnancy wasn’t easy. In fact, it was much different from my first. I reached out to doctors at the hospital I had been told would give my child a chance at life and transferred my care to them. I met with several doctors, specialists, surgeons, and palliative care. We had frequent appointments, and the hospital even worked closely with my local hospitals to make sure I could get at least some of my care locally without having to travel as much. It was an exhausting journey, but the amount of support I had from friends, family, coworkers, and social media gave me the strength to keep fighting for my Charlotte.

On February 23, 2020, Charlotte was born at 38 weeks and 6 days, weighing 4 pounds 3 ounces, and 16 inches long. She has several heart defects and part of her brain didn’t form properly, which causes seizures. She is unable to breathe and eat on her own, but recently got surgery to have a tracheostomy and gastronomy tube placed to help with these issues. While she was a tiny little peanut at birth, she came out fighting and hasn’t stopped fighting since. The nurses and doctors always comment on how strong and feisty she is, and how it’s helping her fight.

Courtesy of Megan Gaffney

Charlotte is now one month old and not only is that one month more than we ever expected to get with her, but her medical teams are also impressed with how well she is doing. I have learned so much from this girl during my pregnancy and during this last month. She is an absolute light in the life of my older daughter and I. I don’t know how long we will get to spend with Charlotte, but every single moment feels like the greatest gift.

If there is one thing I hope Charlotte does for the world, it’s to bring awareness to Trisomy 18 and to show the world that while her condition may be life-limiting, it’s NOT incompatible with life. She is compatible with love, and strength, and tenacity.”

This story was submitted to Love What Matters by Mega Gaffney. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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