To look down and pay close attention to our 21 month old baby, Francis, can make anyone’s heart sink. In our eyes, he is perfection: three tiny freckles on his nose, dove white skin, bright orange hair and a smile to melt the arctic. But our son has pock marks on all his wrists, ankles and neck from the IVs, as well as six incision scars on his trunk, one of these scars extends from his neck his stomach. They are visual reminders of his complex medical history and the four surgeries he has had to endure in his short life. 




On October 31, 2016 we left a Halloween party and headed over for a 38-week checkup at the doctor’s office, still in our costumes. We were told that Francis was not getting enough oxygen in the womb. The doctor was very direct with her instructions.  “Do not go home first,” she said. “Get in the car, get on the freeway, and drive to San Francisco. I have already called the hospital, and they will be ready for you. This baby is coming today.” This was the beginning of our month-long joyful tragedy: we left that day and did not bring our baby son home until November 29th.




Francis was born by emergency cesarean section at the California Pacific Medical Center in San Francisco that evening. To name him was easy, Frances was his paternal grandmother’s name, Frances Patricia Daley, who died 18 years earlier on Halloween. Our son entered the world with several health problems, some of which we were aware of, some we were not.  This caused him to spend his first month of life in the Newborn Intensive Care Unit —actually, two NICUs, one in San Francisco and the other at Stanford Lucille Packard Children’s Hospital—where he eventually had surgery. We knew he probably had Down syndrome and definitely a heart condition. A year-and-a-half into our marriage, our medically complex son was born. The condition we did not know about required immediate surgery before he could come home. 




The unexpected condition was Hirshprung’s disease. Francis did not have the right cells present in his lower intestine to be able to have a bowel movement. The contents of his bowels backed up into his stomach, and he vomited what should have been coming out the other end. The surgeons at Stanford cut out the bad portion of his intestine and reattached it before he turned three weeks old. This surgery repaired the first issue. 




During this period, we did not know if our son was going to die or not. We didn’t talk about it, but that was the reality. Francis had a feeding tube, draining tube and was hooked up to several types of monitors. We performed enemas twice daily, to do by hand, what his little body could not do on its own. In the hospital we could be by his side as much as we wanted, but it is not the same as bringing one’s baby home. We lived in the hospital, next to his bed, in waiting rooms, in random hotels, and at the Ronald McDonald House. Our home and all of our support groups were well over a hundred miles away. We took each day and each hour slowly, with minimal amounts of sleep. 




We educated ourselves about Down syndrome and began to accept that our son was different than we expected.  Our family grew closer. We trusted in God and our faith in doctors grew each day. Although the fear of losing him still lingers with us.




Francis required another surgery before he was six months old, open heart surgery. He had Atrioventricular Canal Defect; cardiac defects are present in over half of the children born with Down syndrome. There were holes in his heart, and the blood was passing back and forth between the chambers. The surgery has a high success rate. Although his cardiac surgeon was honest: “there is always a risk” of losing him with this type of surgery. They literally stopped his heart, disconnected it from his body and hooked him up to an “external heart” to complete the repair. We were confident, and Francis came out the other side just fine.




After they repaired his heart, our son became a rambunctious little guy. We started working with teams of therapists from the Regional Center and he started going to groups where he could be with children like him. He was making amazing strides and there was very little different about him than typically developing children. We joined a playgroup, which has become the JC Neighborhood Mama Bears, and he loves playing with the children who live nearby.




At about 10 months old, Francis started waking up every few hours, all-night-long. We were taking him to all his specialists visits, which were required after his surgeries, and looking for answers. We changed him to a special, very restrictive diet and that helped a little. It was evident that he was congested all the time, so we were referred to an Ear Nose and Throat Specialist who immediately ordered a sleep study for Francis. This took us back to Stanford to stay the night and hook him up to monitors.




The results of the sleep study were shocking. Francis has severe sleep apnea; he was waking up every few minutes because he was not able to breathe. The doctor’s recommendation was to remove his tonsils, adenoids and place ear tubes immediately. Without this surgery Francis would not develop properly, i.e. learn to walk, he was losing too much oxygen during his sleep. This took us back to Stanford Children’s Hospital, for a surgery and a third stay in the Intensive Care Unit. 




Francis keeps quite the schedule: specialists, therapists and surgeons on a daily, weekly and monthly basis. He has logged 251 hours during the last 21 months: Early Intervention Specialist (65 hours), Physical Therapist (55 hours), Occupational Therapist (45 hours), General Surgeon (27 hours),  Ophthalmologist (12 hours),  Cardiologist (12 hours), Otolaryngologist (12 hours), Gastroenterologist (7 hours), Feeding Therapist (7 hours), Lactation Consultant (5 hours), Endocrinologist (3 hours), Cardiac Surgeon (2 hours). This does not include time in the hospital for the surgeries, his regular primary care physician visits, labs tests, ultrasounds, High Risk Clinic, Down syndrome Clinic, nor travel time to and from San Francisco and Palo Alto. There is always something to pay close attention to: heart, intestines, breathing, swallowing, speech, feeding, vision, walking; it is a full-time job. It became apparent to us that we could not be a two parent working family any longer and Ginger had to close her thriving marketing business around Francis’ first birthday. 




Over the last year we were watching an incision on his stomach, that stayed swollen after he had his first surgery; it made us feel uneasy so we requested an ultrasound. The results were that it was a hernia that needed repair—another surgery—this would make the fourth, in less than two years. This was by no means as intense as open heart surgery, but no parent wants their baby to go under anesthesia and be cut open. We have high hopes that this was Francis’ last surgery, forever.

Despite his intricate medical history, Francis is an absolute joy. We owe so much to the people who are his medical and therapeutic support group. He is curious and outgoing: walking, talking, toddling and dancing. It is contagious, there is no doubt that he spreads love everywhere he goes.

We are humbled by the amount of support we have received from our community, family and friends. Thank you.

The Oak Leaf Rebekahs are hosting a Polynesian Night on August 22nd at 5:30 at the Odd Fellows Hall (545 Pacific Avenue, Santa Rosa). There is a Polynesian music and dance show, 50/50 raffle, dessert auction and dinner! The cost is only $20 for adults, $10 for children 12 and under, 5 and under are free. Please RSVP to hold reserve a ticket: [email redacted] or (707) [phone redacted]