The only doctor’s appointment I missed with both our girls was the one that mattered. Our first pregnancy had been smooth sailing. So when a work conflict made it challenging for me to get to the 4-D ultrasound, my wife, Ciera, said it would be ok if I skipped. But what should have been a pleasant, if somewhat routine, milestone turned into several tense hours foreboding what would become the most difficult period in our lives.
We were having a girl who would be born with a cleft lip and palate, heart defects, known as AV Canal, an umbilical cord defect and multiple anomalies suggesting a genetic disorder was inevitable. We knew nothing conclusively except that there were problems. Retardation? Probably. A fatal disorder such as Trisomy 13 or 18? Possibly. Unknown challenges and abnormalities that would require surgeries, hospitalization, and all the difficulties that come along with having a special needs child? Definitely.
Fast forward through a pregnancy that was emotionally and physically torturous, including a period where Ciera had to be hospitalized and bed-ridden. Our daughter was born on September 20th, 2006 at Valley View Medical Center in Van Nuys. After the C-section, they let Ciera give her a brief kiss on the cheek and then immediately whisked her down to the NICU. I went with our new daughter as Ciera recovered, restricted from holding her, and only able to watch and pray as I witnessed her have a seizure within the first hour of life outside the womb.
We would spend the next few weeks in the hospital and chose to name her Shae, in no small part for its Gaelic meaning, “A Gift”. Everything in our experience felt like she was the opposite. But we needed to remember that there was a future we could not see and hold onto a hope in things that felt impossible.
About two weeks later, we brought Shae home. Due to immediate difficulties in her ability to eat and breathe, we found ourselves back in Valley View and then immediately transferred to Children’s Hospital in Los Angeles, where we would stay for the next six months as Shae would undergo a dozen surgeries and procedures. We left our home in Valencia, gave away our dog, and rented a small apartment near the hospital so we could provide our daughter with round the clock support. This meant putting our 21 month-old daughter, Gianna, into extended daycare while I was at work. At night, Ciera and I took alternating shifts either staying at the apartment with Gianna or the Hospital with Shae. Shae was fighting for her life and was in a great deal of pain. We did everything in our power to comfort her around the clock. We were virtually powerless to help her. The one thing that we could offer was touch. So we held on to her with everything we had.
The experience felt to all of us like a prison sentence and we didn’t know if we’d ever be free to bring our baby home. Then in April, it happened. Shae had largely recovered from her surgeries to the extent that no more were scheduled and she was safe enough to go home. She left with a cast around half her body, a feeding pump around the clock through a G-tube, Oxygen 24/7, heart monitor, oxygen monitor, breathing treatments, medication around the clock, and weaning off of two narcotics due to surgery back to back.
But we got to go home, and it was the most freeing moment of our lives. Our home became like a medical facility. We were exhausted and depleted. Yet layer by layer, she got better and our new normal improved year by year. We had no guarantees that she would walk, eat, or speak, but we never gave up hope.
It’s enough to watch your infant child suffer and struggle for life. Our pain was compounded by all that we witnessed going on around us in the hospital. Single parents unable to be present during the day, and giving all they had at night to their children. One newborn baby girl with a heart condition and two married parents who completely abandoned her, unwilling to care for her through her condition. Babies with intensive medical issues and disabilities. Babies who would die on our floor. The whaling of children post-surgery. The constant beeping of machines alerting the doctors of emergencies. The doctors, the nurses, the staff, the volunteers were all heroic in their efforts to care for every child. But there just were not enough hands to hold them when they needed more than medical attention. There simply wasn’t enough support to cover each child. The saddest thing I’ll ever see is a full crib and an empty bedside.
Children’s Hospital is a miraculous place. World-class physicians giving themselves to the most noble cause for the most defenseless in our society. The bright colors in the building represent the organization’s hope and persistence for children with life-threatening illnesses. They turn no child away and deny no one care, regardless of their ability to pay what would be astronomical medical bills. In spite of everything, we could not have been more fortunate for our parents, friends and volunteers who gave us moments of respite. The fact that Shae had two engaged parents and that my work allowed us to avoid financial hardship while this went on was a blessing that not everyone receives. Relative to our circumstances and our personal decision to have a child in spite of what we might go through, we remain grateful.
When we were discharged from Children’s, Ciera and I made a vow. We promised each other that we would not forget the children and families we left behind who would continue to struggle, those that didn’t get to bring their babies home or the unborn children whose struggles had not yet begun. That means more to us than just thinking about them and wishing them well. We vowed to make a difference.
Today, Shae is 11 years old. She is still G-Tube fed at night but eats regular meals orally during the day. She is (very) verbal, and has the best memory of anyone in our family. The suffering child who was born into constant misery has evolved into the happiest person I know. Despite the work of multiple Geneticists, she has no diagnosis. She is Shae. That’s all we know, and she radiates with joy. Developmentally, she looks and functions at a level about half of her actual age. She has cognitive as well as speech delays. She laughs constantly. She is funny. She is sweet. She is loved and adored by the world, including her big sister, who is her friend and protector. Shae asks me how my day was every time I come home and asks about the people who work at Oxford Road by name. She plays basketball in the Special Olympics. In February, I took her to the Father-Daughter dance at her public school. No child passed her without greeting her my name or offering her a hug. One young girl looked at me and said, “Shae is the most popular girl at our school.” This child has become a gift to our family and our community beyond anything we had dared to dream.
In 2013, we were stable enough at home that Ciera encouraged me to go out on my own and start a company, Oxford Road. One small thing we’ve done as a company is committed a monthly donation to Children’s Hospital, and to increase that donation in proportion to how many people respond to the ads that we place for our clients. We’ve been able to give close to $20,000.
I take pride in that effort, but it simply is not enough. Through our personal experience with Children’s Hospital, we know there is a tremendous void left between the number of babies who need to be held and the number of people available to hold them. We have begun collaborating with the team at Children’s Hospital Los Angeles to make a real dent in this cause by connecting more volunteers to more children in need. Surprisingly, there are enough volunteers willing to hold children, but there are no funds to create an organized program within the hospital to facilitate training and management of that program. They have the same demand as when we left, and the supply is ready and waiting. But to fully solve this problem in our community, we are on a mission to raise $300,000, allowing a full three years of funding for the program. This will allow Children’s Hospital Los Angeles to hire a full-time administrator to connect the available volunteers with the children in need. We are calling the program, “The Koala Corps.” For us, this symbolizes the relationship between a nurturing mother providing comfort and her young. Not to mention, Shae often asks Ciera to hold her, and says, “I’m your Koala.”
This initiative is being spearheaded by my wife, Ciera, supported by the team at Oxford Road, and in collaboration with the CHLA development staff. Once we raise $300,000, then the real work can begin.
I am convinced that the deep-rooted joy Shae expresses everywhere she goes is grounded in the foundation of love from her most formative years, having a mother to hold her every day during her greatest struggle. That love has compounded and resulted in a person who is now a gift to the world.
Now, I’m asking you, will you join us?
Email Ciera directly at firstname.lastname@example.org if there are other ways you would like to help.
At the end of each Oxford Road weekly newsletter, we close with the words “Influence Responsibly.”
The Koala Corps is a good start. Hope you can join us.