I always saw myself as a boy mom. As a woman who prides herself in being a minimalist, having girls was far from my mind.

Receiving a diagnosis of a rare trisomy turned our world upside down. We had no clue of the topsy turvy rollercoaster we’d embark on. We had no clue of how hard we would cling to God and how life-long friends would be made. There’s no preparation for the possible demise of your child. We are one of the fortunate ones. A family who left the hospital WITH their child. A family who fought for fair care.

Brooke

After one year of marriage, my husband and I found out we were expecting our first baby… a baby girl! However, that news was stifled by what was supposed to be a joyous day. My OB at the time proceeded to tell me via a phone conversation that my noninvasive prenatal testing (NIPT) showed that our baby girl was at high risk for Trisomy 18. I had never heard of Trisomy 18 and my doctor thought we were getting a false positive result. She thought this because it is rare and she had only seen this diagnosis a handful of times in her career as a physician. From there, she recommended that I get an amniocentesis to confirm the results as the NIPT is just a screening. We decided to forgo the amniocentesis and wait for the 20 week anatomy scan. I didn’t want to risk losing my baby at such an invasive procedure and hoped for the best at my 20 week scan.

That hope turned to horror…

The day was the same day as Aretha Franklin’s funeral and I had a pink sleeveless body con dress on. The ultrasound tech started off jovial and friendly but as the exam progressed, she turned stoic. She then gets the doctor and she rattles off all the anomalies foundwith my daughter. Cysts on the brain, clenched fists, clubbed foot, 3 holes in her heart and a small optic nerve. She then proceeded to nod her head when I responded with, “So you’re telling me my baby is going to die.”

Fast forward to my next OB appointment…she told me that the neonatal intensive care unit in our area would not be able to handle her needs and that intervention would only prolong the inevitable. She too, was very grim and not optimistic. I asked to be sent to the medical center here in Houston. The root issue of such negativity is that Trisomy 18 is deemed incompatible with life and is based off studies on newborn that do not receive any interventional care.

Once at the fetal center in the medical center, we were greeted with more doom and gloom. They even informed me that my baby was not worth a c-section despite being in a breech position. At this point, I was 36 or 37 weeks pregnant. By the grace of God, I was put in contact with my current OB who met us with compassion and expertise. He acknowledged the road would be bumpy, but that we would work together to get us through. Phoenix was born on January 1, 2019 weighing 5 pounds and 3 ounces.

The road was indeed bumpy…

She had open heart surgery at 1 month old. She had bilirubin issues, kidney issues, arrhythmia, chest tubes, tracheostomy, g-button for feeding, and a myriad of additional problems.

Now, Phoenix is 4 and thriving! Children with Trisomy 18 can and do live! Yes, many pass away and the life span is about 16 years, but our children live! For more information, please visit http://trisomy.org for the most up to date information and data