Our family was blessed with the birth of our son, Gideon, in the spring of 2013. After a blissful two days, his health began to decline. First, he was categorized as failure to thrive when he had trouble eating and gaining weight. At 4 months old, he experienced a sudden loss of all milestones, leaving him seemingly deaf, blind and unable to lift his head. Soon later, mysterious seizures began.
Gideon was eventually diagnosed with West Syndrome, a form of infantile epilepsy with a terrifying prognosis. Medical literature commonly refers to it as ‘the catastrophic diagnosis’ due to the impact it has on quality of life. Gideon has since undergone six brain surgeries as we’ve struggled to control his seizures and remedy the ramifications of injuries sustained during his initial surgery. Unfortunately, parents of children with epilepsy are often forced to choose between two evils: ongoing seizures or an inevitable disability as a result of brain matter removed during surgery.
These photographs document the days before, during and after Gideon’s fourth surgery where a bio-plastic plate was inserted and meshed with his skull to replace a section of bone that was lost to infection one-year prior.
Gideon, nicknamed The Gilly Monster, is joyful and unaware of the extraordinary circumstances of his life. He wears a helmet to protect the portion of his skull that's missing bone. It was designed and painted by a local tattoo artist and remains one of our most treasured possessions from his babyhood.
Gideon is fed via a gastronomy tube (g-tube). When possible, we avoid chemical-laden boxed formula and opt to make our own. The homemade food, which we call Gloop, must be transferred to a measuring cup and then poured into a medical pouch. The pouch is attached to a pump that controls the speed of the feeding.
Gideon receives over 15 medications a day that are also given through his g-tube. Each one must be carefully measured prior to administration. His syringes must be thoroughly washed, as, unlike at a hospital, new syringes are not provided on a regular basis at home.
We access Gideon’s g-tube by attaching a plastic extension to the port that sticks out from his stoma – a small opening in his abdomen. Effectively a chronic open wound, infection control at the stoma site is a daily struggle that occasionally requires hospitalization.
I catch a rare moment of one-on-one time with big sister Lilah. She’s shown extraordinary resilience throughout her brother’s health struggles. Naturally, she wants to be a doctor when she grows up – and a fashion designer.
I help nurse Lauren troubleshoot a problem with Gideon’s feeding system as Lilah, enjoying a scoop of ice cream, looks on. Lilah is torn between wanting to help take care of her brother and mounting fears about her long-term role in his health care.
Home nursing is essential for children like Gideon but it’s often inconsistent due to the below market wages paid by the state. Lack of adequate in-home support is one of the primary reasons why medically fragile children are recurrently hospitalized.
Its 5 a.m. and Gideon vomits at the hotel en route to the hospital. There’s no time to clean up, so his matted hair will have to be washed in pre-op. Our car has not yet been converted for wheelchair access, so every transfer includes unfolding and reassembling Gideon’s chair and ensuring he’s properly strapped.
Gideon Miles Ford. Born March 28, 2013 at 3:20 a.m.
I let my guard down for a moment. The stress and exhaustion I’m feeling are apparent.
Laughter is the best medicine! Finding joy in even in the most difficult of circumstances is a survival technique that I learned during my own health scare about five years prior to these photographs.
Back to work. Stress mounts again as operation time draws near. Nurses continue their final checks and complete health reviews with me. We confirm Gideon’s current medications, ensure he’s had no symptoms of respiratory infection and review major events in his health history.
Gideon is washed clean. He remains swaddled in a towel to ease the administration of an initial sedative. I squeeze his body in tight hugs to help him relax. Although he’s not able to verbalize it, I can tell he knows something scary is about to happen based on his previous experiences.
Gideon is given a nasal sedative in preparation for an IV line. Doctors and nurses help me hold him down as they administer the medicine. Sometimes it’s possible to start sedation with gas, but today we need blood work before the procedure begins.
Just like on television, the surgeon marks Gideon’s head with a permanent marker. Marking the site pre-surgery and asking the parent to explain the procedure is not just for show: it ensures comprehensive patient understanding.
Gideon is ‘drunk’ at this point and no longer able to sit up. The sedative relaxes him enough for doctors to place an IV line, which is covered with a hospital sock to prevent any pulling. With veins so weak and full of scar tissue, it’s often hard for doctors to re-enter an IV access point.
A final breath together before surgery begins. The trust a parent must place in the hands of their child’s surgeon is beyond words. Each sedation and surgery is easier than the last and also re-awakens fear and trauma from past procedures.
I speak to the hospital chaplain as Gideon’s dad catches up on work in the background.
It’s about six hours later. I climb into Gideon’s bed and hold him to ensure he’s enveloped with love as he wakes. He winces in pain and confusion and I talk softly to him.
What a difference two weeks makes! We’ve been transferred to a new hospital for inpatient rehabilitation focusing on speech, physical therapy and occupational therapy. Gideon’s deficits in all these areas are a constant reminder of the potential life sentence of his diagnosis, but today we’re all smiles.
A music therapist and occupational therapist partner in rehab. Gideon is wearing an alternative helmet because we don't want to put pressure on the new incision.
Home at last and back to daily life! Gideon takes a maiden voyage in the wheelchair lift that was built during his three-week hospitalization. The lift allows me to easily transport him in and out of our house without risking injury to either of us. It was funded by the Regional Center, a program unique to the state of California.
A lot has changed for our family since these photographs were taken. Gideon’s had two more brain surgeries – one for hydrocephalus and one to address the return of his seizures. This latter surgery has been nothing short of miraculous: since he was discharged in May, he’s started talking, making eye contact and rapidly increasing his fine and gross motor skills. Although he’s still g-tube fed, he takes a few less medications each day.
Unfortunately, there have been difficult changes as well. Gideon’s father and I are no longer together and we’re working to co-parent in a system that’s not set up for marital separation. Also, Lilah has been struggling with her own disability challenges that include an increase in the severity of her eating disorder as well as general anxiety.
Both of my children’s care teams work hard on a daily basis, but a lot of ambiguity remains about what the future holds. For now, we all try to remember that what doesn’t get done today can always be done tomorrow.
