Trisomy Awareness Month

March is Trisomy Awareness Month. Because my family lives the “Trisomy life”, we want to share some of our Trisomy life with you.

My induction into the Trisomy tribe, I imagine, was something akin to baptism by fire. We had no warning. I was planning on going out for tacos. Instead, I was emergently admitted to the maternity floor with a baby that wasn’t tolerating life in the womb any longer. Induction failed. Her heart was getting weaker. I was frantically prepped for an emergency c-section, while my husband’s mother stood nearby and panicked.

Once I was numb, they worked hastily. My husband sat by my head. They told us she was out, but there was no joyful presentation of her above the drape. There was no excited proclamation of her sex. She was quiet and blue. The nurses and midwife jumped into action while the surgeon worked to close my wound.

It seemed like a million years passed in those few minutes.

I asked my husband to check on her. The nurses made him sit back down. Finally, after an excruciating eternity- our baby girl cried. I was so relieved. Until they announced that she wasn’t maintaining her oxygen levels and needed to be rushed to the nursery. I was allowed a few seconds to meet her and then she was off in a blur. I urged my husband to go with her because I didn’t want her to be alone.

Once I could feel my legs again, I was wheeled up to the nursery to meet the sweet girl who had inhabited my womb for the last 38 weeks and a few days. They had her on an open bed with a heat lamp on. The newborn hat was giant on her head. Even with it nearly folded in half it was still able to cover her eyes and protect them from the harsh light. She was so small that she looked like she could have been made of porcelain. I will never forget her perfect pouty lips or how warm she felt on my skin.

My head was foggy from the drugs and exhaustion. I didn’t understand the implications of the words that they were telling me. I didn’t know that clenched fists, weak muscle tone and failure to thrive were symptoms of a serious genetic disorder. I didn’t understand that there was something wrong. I had no idea that in a few days, when we learned her diagnosis, our lives would change drastically. I had no idea that our fate had been determined upon conception.

When she was six days old, the sweet girl I referred to lovingly as baby Chi-Chi for my entire pregnancy was diagnosed with a fatal genetic disorder called trisomy 18. Trisomy 18 is the stuff of nightmares for new and expecting parents. The research that exists is outdated and minimal. Most doctors believe it is an automatic death sentence. Because of this, T18 babies aren’t often offered appropriate medical care and they die from complications of their genetic disorder. Approximately 5% live to age 5. Baby Chi-Chi is now 6 and a half years old.

She is 6 and a half years old because I am stubborn. I refused to take the word of someone who ignorantly refused to come evaluate my child in person because of genetic discrimination. I refused to believe that because she has an extra 18th chromosome in every cell of her body she will simply cease to exist and that there was no way to prevent it. I refused to roll over and accept defeat. Baby Chi-Chi was breathing on her own despite having failure to thrive, two large holes in her heart, experiencing a traumatic birth, jaundice, and an inability to eat on her own. She didn’t seem to be actively dying to me. As long as she would fight, we would fight with her. We decided we would be her voice.

She is 6 and a half years old because I am a bitch. Don’t get offended. Hear me out. In life and death situations–when trying to approach a scenario with calm assertiveness and logic doesn’t work–you have to play the bitch card. If a small town pediatric cardiologist wants to blow my child off without ever meeting her, you bet your ass I will “go behind his back” to get a second opinion. I would do it again in a heartbeat. I’d even fly the helicopter myself. I am active and present in my child’s care. If she isn’t given the same care and opportunities that a non-chromosomally enhanced child is given I am not afraid to speak up.

She is 6 and a half years old because I am loud. If my daughter’s online lab report says that her blood count is low because she needs a transfusion, but the resident tries to tell me her blood count is fine, I am not afraid to call him out and show him the results in the portal via my phone.

She is 6 and a half years old because I believe in her and I advocate. I advocate for her every single day. I fight for her right for equal care from ill educated ableist doctors who base their practices on data that is from the 50’s and should be considered obsolete. I gladly share our story with the world. So other people can know that not all hope is futile. As a family we attempt to uplift newcomers on this journey by showing off our sweet girl, and helping them advocate for their sweet boys and girls.

She is 6 and a half years old because we accidentally stumbled upon a video on YouTube. A video of a boy who has Trisomy 18 and is living incredibly well despite the grim statistics. She is alive because another family gave us hope. This is a debt we will never be able to fully repay, but we continuously try to pay it forward.

Throughout the month, I’m going to drop some Trisomy Tidbits and share some of our Trisomy Homies with you. This tribe is beautiful, incredible and so very inspiring and I can’t wait to share them with all of you.