In January 2017, my world was shattered when my first pregnancy ended in a devastating miscarriage at just 10 weeks gestation. The pain and heartache were indescribable, but my husband and I were determined to start again. After six long months of trying, we received the news we had been hoping for – I was pregnant once more. However, this time, our emotions were mixed with fear, given our previous experience.
Our journey took a turn during our first OB appointment at 9 weeks, where we heard the beautiful sound of our baby’s heartbeat, something we hadn’t experienced in our previous pregnancy. Despite this positive sign, we decided to undergo genetic testing to assess the likelihood of another miscarriage, and to discover our baby’s gender.
At 14 weeks into the pregnancy, a phone call from our doctor brought the earth-shattering news: “I’m sorry, but your test results show a high possibility that the baby will have Trisomy 18.” At that moment, I had no idea what Trisomy 18 was, so I asked if it was similar to Trisomy 21 (Down syndrome). The doctor’s reply was heart-wrenching, “No, most pregnancies with a Trisomy 18 diagnosis do not make it to full term, and if the baby is born alive, they usually only survive for a few days, at most.” She warned against Googling the condition due to the horror stories.
But the news didn’t end there. We found out we were expecting a girl, and the weight of the diagnosis hung heavily over us. Our journey became a rollercoaster of emotions and medical appointments, with every visit bringing new challenges. An anatomy scan at 20 weeks revealed a multitude of markers associated with Trisomy 18, including a hole in her heart, microcephaly, and more.
Our medical team offered us the option of abortion, but we made the difficult decision to continue with the pregnancy. It was during these trying times that we learned to cherish every moment, no matter how uncertain it seemed. We prepared ourselves for all possibilities, from the hope of bringing our daughter home to the heartbreaking prospect of saying goodbye.
At 34 weeks, we met with the NICU team and crafted a birth plan that accounted for every scenario, ensuring that our daughter’s comfort and well-being remained our top priority. We even discussed cremation, should the worst come to pass. But we held onto the glimmer of hope that we might get the chance to meet our daughter alive.
On February 15th, 2018, the day finally arrived. I was induced early in the morning, and after hours of anticipation, our daughter, Harper Abigale Johnston, entered the world through a C-section. She was born with multiple heart defects and other Trisomy 18-related issues, but her arrival filled our hearts with immense love.
Harper faced her first surgery at just three days old, and her journey was far from over. Throughout her first year, she underwent numerous surgeries, dilations, and procedures. Her tiny body fought valiantly, and the support of our medical team and our unwavering love helped her overcome many obstacles.
Leaving the NICU and transitioning home was both exciting and terrifying. No longer under the constant watch of nurses, we were now responsible for Harper’s care, with feeding pumps, oxygen tanks, and medical equipment in tow. Our journey was far from easy, and we faced setbacks and hospitalizations along the way.
In April 2018, Harper received a G-tube and had her esophagus dilated, but she continued to struggle with health issues. Her doctors worked tirelessly to address her needs, even resorting to medication when her persistent crying seemed to indicate neurological pain.
Then, in October 2018, Harper fell seriously ill. She was hospitalized, and her condition required careful monitoring. The journey was made even more challenging due to her Trisomy 18 diagnosis, which complicated her medical care. Eventually, we were transferred to a larger hospital in Austin, Texas, where specialists were more familiar with her condition.
Despite the uncertainty, Harper’s resilience shone through. She endured another round of hospitalizations, treatments, and surgeries, including open-heart surgery that saved her life. Through it all, she amazed us with her strength and determination.
Harper celebrated her first birthday against all odds, a milestone we had initially feared she might never reach. Her journey was filled with ups and downs, but her unwavering spirit continued to inspire us. She underwent seven surgeries in her first year of life, spending a significant portion of it in the hospital.
As time went on, Harper’s health began to stabilize. Her hospital visits became less frequent, and by January 2019, she was off all medications. Our little warrior had defied the odds and was thriving.
When we first received Harper’s Trisomy 18 diagnosis at 14 weeks, we couldn’t have imagined the journey that lay ahead. We thought we might lose her before birth, but Harper not only survived but also thrived. Instead of waiting for the worst, we embraced each day, cherishing every moment with our daughter.
Today, as I write this in June 2020, Harper is approaching 2.5 years old. She is healthy and thriving, defying expectations every step of the way. Our journey has been filled with challenges, but it has also been a testament to Harper’s strength and resilience.
When faced with uncertainty and adversity, we chose to live rather than wait. Harper’s life has shown us the incredible power of hope, love, and the human spirit. She has Trisomy 18, but she is living her life to the fullest, and we are privileged to be part of her remarkable journey.
Lateɾ, they all had a fun paɾty
