by Michael Allen
Our journey began on May 20 with the birth of our daughter, Skylar Allen. Because a Neonatal Intensive Care Unit (NICU) is not available in Casa Grande, we were sent to the Tucson Medical Center, where my wife, Jessica, underwent a cesarean section.
While Jessica was getting to the recovery room, I got to see my princess Skylar. She was so beautiful, but everyone knew something wasn’t right. Jessica wasn’t able to see our daughter until the next day. Our beautiful little girl, Skylar, was so tiny – a mere 3 pounds, 8 ounces and 17.5 inches long. The NICU nurses loved her. As the days went by, the doctor said they would conduct genetic testing on Skylar and that he believes she has Trisomy 18.
“What is this?” we thought. The doctor said results would be back in a couple weeks. While waiting for the confirmation, he broke the news to us on Trisomy 18 – and boy did we take it hard. How can you tell someone your child is incompatible to thrive with life, and that most babies won’t make it a couple weeks? We later found out 90 percent of babies with Trisomy 18 don’t survive to their first birthday.
We were in shock, with emotions going through the roof. We called our family to visit in case she went to see God. Family from as far away as Georgia came out for support and to see their beautiful niece. After several days, Skylar was transferred to Peppi’s House Hospice. We traveled back and forth to Casa Grande and the Ronald McDonald House. Eating out for all of your meals is expensive and gets old fast.
Fortunately, June 7 was a day of celebration. The doctors said we could bring Skylar home! The arrangements included bringing her home in a special van and she was hooked up to oxygen. After settling her in and waiting for her nurse to arrive to show us her care routine, the monitors, which constantly alarmed, scared us beyond belief. When the nurse asked us whether we wanted a DNR (Do Not Resuscitate order), our emotions were raw when we said, “Yes.” As the conversation went on and on, we decided to have Skylar stay at Ryan’s House hospice in Phoenix.
Jessica and I took turns staying in the beautiful room assigned to us. One of us was always with her. After about a week, Skylar stabilized enough to take her home – this time without the monitor and only oxygen. It wasn’t long before she was off the supplemental oxygen. Skylar is still on a feeding tube (NG or Nasal-Gastric tube). She delights in pulling it out, requiring nurses to come replace it. She needs the extra nutrition it provides, as she is still so small.
The community has been a blessing to our family. Jessica and I were out of work after Skylar was born. I started a new job with Merle’s Auto Supply after about a month. We’ve had so many people reach out to help with car washes, yard sales, ribbons and raffles, donation buckets and many, many prayers. So many of our religious leaders from St. Anthony’s of Padua have been to the house to bless our home and Skylar and pray for us. Fr. Ariel and Fr. Alan, Deacons Steve DiMuzzio and Pat Dugan and even the “Money Man,” a monk from St. Anthony’s Greek Orthodox Monastery in Florence has come to pray for Skylar. Our family has been to church every Sunday since returning to Casa Grande. The power of prayer is a huge part of our journey forward.
Skylar is now three months old and continues to amaze her doctors and nurses. She has reached so many milestones that they never thought were possible. We told Dr. Berger we want to treat her for the long haul. We have God on our side and we are going to prove the doctors wrong on Trisomy 18.
What is Trisomy 18?
Trisomy 18, also known as Edwards syndrome, is a genetic condition caused by an error in cell division. Instead of the normal pair, an extra chromosome 18 occurs in the developing baby and disrupts the normal development in significant ways that can be life-threatening. A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States and 1 in 6000 live births. Most children born with Trisomy 18 die before or shortly after birth.
Some infants will survive to be discharged from the hospital with home nursing support. About 10 percent may survive to their first birthdays. But there is hope. There are a small number of adults (usually girls) with Trisomy 18 who are living into their 20s and 30s. Here is the journey of the Allen family in Casa Grande and their precious gift – Skylar.