‘Your daughter tested positive.’ I asked, ‘What does this mean for her?’ The reply? ‘You can Google it.’ I was HYSTERICAL, but we didn’t give up.’: Woman becomes advocate after daughter born with Trisomy 18

“It’s been almost four years since my daughter entered the world. My pregnancy was seemingly uneventful, although I had visited the emergency room several times in the last few months. I constantly insisted something seemed ‘off’ but was shrugged off by doctors as being a first-time mom. My last emergency room visit was due to increasing contractions, but after an ultrasound I was sent home. I remember they wouldn’t let me even see the images: ‘Everything looks fine.’

To be honest, I was over being pregnant. If I’m being even more honest, I hated being pregnant. I knew this was going to be my only child (my husband has three boys from previous relationships) and I just wanted one girl. And sitting there, digging her toes into my rib cage, sat my one girl…I was ready to meet her already. I had visions of what she would look like, who she would be.  Since I was blonde, I imagined a blonde, curly-haired little girl with bright eyes and a big smile. I hoped she’d have my husband’s eyelashes and his sense of humor. I hoped she’d have my cheekbones and my love of books. I had dreams of her being my absolute best friend, my partner in crime.

The morning my water broke, I was ecstatic. This is it! Today is the day. But as the water continued to pour from my body, I started to worry. ‘Is there supposed to be this much?’ I asked my husband. ‘I don’t know,’ he said. ‘It shouldn’t be colored like this,’ I said. ‘Do I have time to shower before we go?’ I stood in there for 20 minutes, and it still was coming out. I grabbed a towel and rode to the hospital with it underneath me, nervous but excited. I asked my husband to stop for food since I knew they wouldn’t let me eat, but I was too nervous to even finish my meal.

It all started off fairly normal. When we got there, they checked everything out and asked to put me on a monitor. My original plan was to go all natural, it’s why we were at this hospital. They told me they needed to monitor me because I wasn’t progressing. I started to panic a little. Blood was drawn and an IV put in…my first IV ever. I am unreasonably afraid of needles, and my husband had to talk me through my inevitable panic attack. My nerves started to really control the situation as I became more and more aware of how this wasn’t going like I had planned. Our entire family was there, which didn’t help my nerves. I was petrified something would go wrong and everyone would be there to see it. I was embarrassed of how scared I was.

They found meconium in my amniotic fluid. My mom noticed how deflated my belly looked. I wasn’t dilating. My contractions were minimal. The doctor wasn’t my doctor, but someone on call. They wanted to use pitocin to get things moving. First dose, Georgia’s heart rate dropped, so they pulled it. A few hours later, they tried again. Things seemed to be working, I was having contractions. I asked to use the restroom, and then everything became chaos. Nurses and doctors rushed the room, pushing our family out. They flipped me over and said they needed to insert a catheter. I was hysterical as my husband tried to calm me down. ‘We need to do an emergency C-section…her heart rate is dropping fast.’

I’ve never had a surgery or hospital admission, but having a C-section while awake is the most frightening thing I had ever done.  I was petrified I’d have a panic attack right there on the table, and begged the doctor to let me play music in the operating room.  She agreed. Everything seemed busy, but calm, as they worked on me. I kept asking for my husband, and they finally brought him in right before they were ready to get our daughter out. As they pulled her, the room became silent. I was very aware she wasn’t crying. I start pleading to my husband, ‘Why isn’t she crying, why isn’t she crying?’ And then…the tiniest squeak emerged. They laid her on my chest and she was so small. I could hardly see her over my own chin. After a few seconds of her quietly lying there, they whisked her and my husband away.

Everything sort of became autopilot after this point in our story. My father was diagnosed when I was seventeen of neuroendocrine carcinoid cancer, and I think my years of hospital visits with him sort of groomed me for the moments upcoming. Within days she was given a slew of diagnoses: IUGR, three heart defects, clenched hands, extreme hypotonia, positional apnea, feeding difficulties, fagcial palsy, severe white matter in her brain, and other physical deformities. I asked for genetic testing, although the doctor continually reassured us she would grow out of all these issues, and reluctantly agreed on our last day inpatient. On January 27, 2017, we were sent home with our four pound, five ounce, ten-day-old infant.

We tried breastfeeding, but her facial palsy and small size made it hard. The heart defects meant everything was more work for her, so we decided I’d pump and she’d be bottle fed. We started seeing cardiology and our pediatrician weekly to check her heart and weight gain. It was a Friday when I had realized I still haven’t gotten our genetic testing results back. It had been almost a month since Georgia came into this world, but we still didn’t have any answers for all her complications. My first phone call was to the hospital, who stunned me with the information they released those results to my pediatrician almost a week ago. I called the pediatrician’s office multiple times, just to be told they were too busy and would have the doctor call me back.

Around 4:30 p.m., my phone rang. ‘Hi, I’m a receptionist with the doctor’s office. Your daughter has tested positive for Trisomy 18…’ I immediately interrupted, ‘What is that?’ ‘We aren’t geneticists.’ ‘But what does it mean?’ ‘You can Google it,’ as she started to read me the Google definition. She stopped before she got to the part that said ‘incompatible with life.’ She said, ‘You need to call Emory Genetics.’ Of course, the first thing I did was Google it. I was hysterical as I read everything to my husband. Less than ten percent survive the first year. Incompatible with life. Clenched hands. Misshaped organs. Multiple physical deformities. Heart defects.

My husband started making his own phone calls trying to get answers, and while every office we called was sympathetic to our situation, no one would truly answer us as to what this all meant, and since it was a Friday afternoon, answers would have to wait. I spent the weekend crying and mourning the tiny little girl in my lap. Monday morning, after our now ex-pediatrician refused to give me any help, I packed up my daughter and stepson and headed to the hospital where she was born. I got her medical records from the office and sat in the car as I opened the envelope. FINDINGS: Trisomy 18. My husband and I very quickly agreed that obviously our daughter fought like crazy to be here, regardless of diagnosis, and we weren’t going to give up because of a piece of paper that said what she could and shouldn’t be able to do. And so began our journey to fight for her.

We found an amazing pediatrician’s office that fully supported our desire to fight for our daughter. Our community rallied behind us, dropping off formula and diapers. We started visiting and conquering all the specialists she needed. We fired a GI and a feeding therapist. Then a physical therapist. Basically, if a doctor or therapist didn’t see the potential in our daughter because of her diagnosis, we weren’t having it. And lo and behold, she started to grow. She was gaining weight and taking bottles, even though we had been told she would need a G-tube placed. She learned to hold her head up and prop-sit, even though we were told she wouldn’t be able to do much but lie there. Her heart defects started to heal on their own without surgery. The white brain matter resolved itself. She passed a swallow study and eventually came off all her reflux medications. Days added up into weeks, and then, finally, she made it to her first birthday.

All the while, we met hundreds, if not thousands, of other Trisomy 18 and 13 families online, who had fought similar battles and showed me their kids thriving, regardless of what medical books said. And slowly, the statistics started to shift as all of our families fought and advocated for our kids. And now, on January 15th, 2021, my daughter will be four years old. If you had only known her at the beginning, you wouldn’t believe who she is now. Georgia eats scrambled eggs and peanut butter and jelly sandwiches now. She drinks milk from a straw. She’s twenty-five pounds, and although that’s still pretty petite, she is crazy strong and healthy. Two of her three heart defects are gone, and she will most likely never need heart repair. She walks, with a walker, and uses a Tobii eye gaze communication device to talk to us. She sits up in the tub and is *mostly* potty-trained.

She isn’t on any medication and doesn’t need any oxygen. She’s never even had a surgery. She was only hospitalized once overnight due to a reflux event when she was six months old. She attends physical, occupational, and speech therapy, and has undergone three rounds of intensive Neurosuit therapy. She attends public preschool twice a week. And beyond all of her accomplishments on paper, Georgia is more than that. She is funny and a prankster. She loves to laugh and play. She has friends she loves and brothers she adores. She is obsessed with dogs and driving her toy car. And she has the most perfect eyelashes and curly hair. She is everything I dreamed of in a daughter and more.

I didn’t dream of being the mother to a differently-abled little girl. And I’m not here to say it was easy at all. It wasn’t, and our family has fought fiercely for the life we have now. I suffered depression and still struggle with anxiety regularly, but it’s getting better. My husband has taken on being the sole provider for our family, and this has brought on its own set of issues. Our sons have learned to live a life that often caters to their baby sister’s needs, rather than their own wants. But for all the hardships, the struggles, the fights, we have risen above. And, dare I say it, I think we are better off this way. We’ve learned and grown. We’ve become closer to God. We’ve been inspired to be resilient in the face of hardship, because if a four pound, five ounce infant can do it, we can too. And she has lit a fire inside of me to live my life in this moment.

Life is too short. As our country grapples with political issues and global pandemic, the temptation to be a victim in the face of circumstance is greater than ever. But if I’ve learned anything in the last four years, you are the keeper of your own life. You can be fearful, but don’t let fear hold you back. You only have one life. You only have one shot to make it as beautiful as you want it to be. If every day my daughter can wake up with a huge smile on her face and the ambition to keep fighting, you can too.  ‘Circumstances don’t make the man, they only reveal him to himself.’—Epicetus. When you decide to take your circumstances, even the ones you can’t control, and view them as opportunities to discover what you’re really made of, that’s when you really start to live.

I don’t know what the future holds for our fierce little girl. I don’t know if Georgia will ever walk independently or feed herself lunch. I may never get to watch my little girl walk down the aisle or learn how to make my great-grandmother’s sauce recipe. But I do know her journey on this earth is greater than my own shallow wishes and expectations. Maybe she won’t ever be able to speak, but I’ve watched her change the minds of doctors and nurses. Maybe she won’t win a Noble Peace Prize, but her life has inspired other families to advocate for their own children. For all the times she isn’t able to do something, she has already accomplished so much more in her short life, and her accomplishments are bigger, and make this world a better place. In the end, if there is anything I want anyone to learn from our journey, it’s that there is always a way. You just have to trust yourself enough to make it happen.”

This story was submitted to Love What Matters by Kimberly Minor of Newman, Georgia. You can follow their journey on  Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.