March is Trisomy Awareness Month

I found out my sweet baby girl, Ashlyn, had Trisomy 18 (Edwards Syndrome) at my 20-week ultrasound. Doctors in Springfield – where we lived at the time – found I had only one artery on my umbilical cord and that she had a cleft lip. She was also measuring pretty small. Over the next few weeks, I was given very little hope about her future. The whole time I was pregnant doctors were pushing for me to terminate so she would have no pain and suffering. But I chose to carry on and let her decide how things were going to go.

My genetics counselor referred me to On Angels’ Wings when I was pregnant and they provided free maternity pictures. They also worked to provide me with all of the information available to them about Trisomy and possible treatments. They never pushed me to decide one thing over another, but wanted me to know the options I had.

In September 2014, I went into labor and an OAW photographer was there to capture my delivery. The doctors gave me no hope, provided little support and were basically monitoring her to see when she passed. Doctors said they would not do a c-section to get her here safely because to them, “it wasn’t worth it.” The delivery nurse snuck a heart monitor on my stomach to allow me to hear her heartbeat; the doctor didn’t want it used in case she became in distress because they would do nothing to intervene unless I was in danger.

But Ashlyn cried like a banshee when she was born and proved from birth that she was going to be a fighter. I learned at the point I was going to have to be one too. They immediately took me to the cardiac floor after she was born to focus on me instead of her. I tried to breastfeed because that was the only option they gave me, but she coded because she could not latch, suck, breathe, and swallow at the same time. They told me I should let her go peacefully.

I had a couple nurses trying to help advocate for her but mostly it was my mom and OAW helping me and encouraging me to get her the help she deserved. I insisted they move me back to labor and delivery, so she could be monitored more closely. I also told them I wanted an ng tube placed for feeding. They were resistant at first, but eventually put one in. Unfortunately, once the ng tube was placed, they were overfeeding her – she was choking, turning blue, and constantly vomiting – again, they tried to blame her Trisomy diagnosis, but I wasn’t having it. I had to get another doctor to come in an evaluate her, to get her feed amount lowered to what she could handle, which they finally did and the choking and vomiting stopped.

Despite the strides she had made her first few days of life, I was still given no hope. Ashlyn was sent home with me on hospice care. I found a pediatrician immediately, but when Ashlyn got a sinus infection at three months old, he refused to treat her because “her organs would just shut down anyway.” Fortunately by Christmas, we found Dr. Ajayi, who was a saving grace and treated Ashlyn like a person.

Ashlyn graduated hospice at six months old and was continuing to thrive. We started therapies with first steps, and I began looking into specialists to get the help she needed, while also navigating being a single mother. When she was 11 months old, I found our home away from home: Cardinal Glennon hospital in St. Louis. The doctors there treat Trisomy children as worthy of life and fighting for. They help me get Ashlyn what she needs to thrive like her feeding tube, her cleft lip/palate repair, and lots of other specialists to monitor all the things in between. And I had no idea how much we would need them in the years to come. From birth, Ashlyn’s immune system was lower than normal. She received her vaccines, but they did not take. She experienced colds, pneumonia, RSV and the flu all within her first year of life.

Little did I know that in July of 2016, when Ashlyn was 22 months old, my world would be rocked again. My sweet warrior was diagnosed with Stage IV Hepatoblastoma (liver cancer). Doctors found 10 tumors total (her liver was covered). She was setup with an amazing oncology team and surgeon that got us through the next six months of chemo treatment. During this time, we were in the hospital for over 90 days continuously. Then back each month after release for another round of scans and meds. Each time she was sedated for just under two hours to see how well treatment was working. During that time, she endured 14 bone fractures (because how brittle the chemo made her bones), seizures, and multiple blood transfusions.

The time came where the chemo was no longer working. I made the decision to go for the resection to get the remaining tumors taken out. In March 2017, doctors took out half her liver and her gallbladder. She rocked the surgery and was back home in just nine short days. We moved closer to her hospital and doctors to get us through the next couple of years after treatment since her immune system was now even more compromised. We were in and out of the hospital more times than I can count but always came out with a smile.

After cancer treatment, Ashlyn’s immune levels were so low that she started needing infusions to boost her immune system every few months. Eventually they needed to be weekly, and she still has weekly to this day. She has been officially diagnosed with hypogammaglobulinemia and osteopenia due to the cancer. Fortunately, however, Ashlyn has been in remission for five years this March.

We were able to move back to our hometown of Lebanon, Missouri near family and friends about three years ago. Ashlyn requires 24/7 care – needing special equipment, therapies, tube feeding and a home nurse – so I’m unable to work because I have to care for her. Medical care is still a fight because there is still a stigma with her diagnosis, but it’s less of a fight now that we have an amazing hospital and team of doctors in St. Louis that fights for her with me.

I also met someone when we moved home who chose to step into the role of dad for Ashlyn, loving her with no limits; she’s definitely a daddy’s girl! He brought a big brother into her world that loves her with everything he has. She now also has two baby brothers to annoy her (and she torments right back, ha!).

On Angels’ Wings has continued with us throughout our journey, and we are so thankful. They have helped me capture some of the most important moments in our life, but beyond that have become out friends and trusted support system.

Ashlyn is now in first grade and loves her teacher. She is fun, sassy, smart, and full of life. She will celebrate her 8th birthday in September, is tackling milestones and learning new things all the time. I want her to continue to thrive and experience life as other children get to. I want there to be less hospital stays and for her to be strong enough for us to take more family vacations together. I want her to know how the world is a much better place with her in it, and how much she is wanted and loved. She is my hero, my strength, and my heart.

Jessica Corbello
Mommy to Ashlyn
Trisomy 18
Journey session recipients since 2014