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.
This newsletter was sent August 29, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.
SAVE THE DATE: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26 – Feb. 27, 2018 in Sacramento. More information and registration here.
REMINDER: Take our California Children’s Services survey here.
Family Voices of California has created a website section devoted to highlighting the outstanding and ongoing work our Project Leadership graduates are involved in. The Project Leadership program is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Graduates have gone on to join family advisory councils, initiate and pass legislation, write op-eds and much more.
To check out Project Leadership In Action, click here.
RESOURCES
Updated Policy: Age For Transition To Adult Care Should Be Based On Individual Needs
The American Academy Of Pediatrics no longer recommends “arbitrary age limits on pediatric health care” and states the age of transition should be left to patients and pediatricians. The policy acknowledges, among other factors, the growing number of children with special health care needs surviving into adulthood whose only access to specialized services is through their pediatricians. To read the policy, click here.
Kidsdata.org Launches ‘Health Status’ Topic
Kidsdata.org houses varying levels of data on the health and well-being of children in communities across California. Their newest topic, ‘health status,’ provides information on whether a child’s health is fair/poor, good or excellent/very good. Results can be viewed for all of California (pictured on right), by individual county, and by race/ethnicity or family income level. For more information, click here.
Survey Seeks Input From Siblings Of Children With Disabilities
The Center For Family Involvement is interested in learning how to better support siblings of children and youth with disabilities. Survey results will help inform the creation of future resources and projects. To access the questions, click here.
Losing Anthem/Cigna Coverage? Health Access California Wants To Hear From You
Anthem Blue Cross and Cigna will stop offering health insurance for most of the California individual market beginning next year. Coverage through Medicare, Medicaid and employers will remain unchanged. Over 300,000 people will need to switch plans, and some may face problems if currently in the middle of a course of treatment. Health Access California is advocating for continuity of care protections and seeking feedback from consumers who will be impacted by this change. To take the survey, click here.
Rally TOMORROW For AB 279: Regional Center Employee Wage Reimbursement
Assemblymember Chris Holden is organizing a public rally in support of his bill, AB 279, on the south steps of the State Capitol tomorrow at 10 a.m. The bill aims to preserve vital services for people with disabilities as regional centers in some of California’s largest cities are in danger of closing because the state won’t reimburse them for paying employees the locally mandated minimum wage. AB 279 would ensure these service organizations receive employee wage reimbursements. For more information, contact Naima Ford at naima.ford@asm.ca.gov
‘Bounce Out The Stigma’ Epilepsy Basketball Camps In Sacramento, Bay Area
The Epilepsy Foundation of Northern California is hosting two upcoming basketball camps for children with epilepsy 7-17 years old. The camps are four hours long and will be led by “Mighty” Mike Simmel, a former Harlem Wizards player who also has epilepsy. Tuition is $25. For more information on the Sacramento and Bay Area camps, click here.
WEBINARS
Archived Webinar: Medi-Cal Services For Children And Youth With Autism And The Family-Focused Model Of Care
This newsletter was sent Aug. 15, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights and action items that affect children and youth with special health care needs, please sign up here.
Reminder: Does your child receive California Children’s Services (CCS) in a county scheduled for transfer to Medi-Cal managed care plans in 2018? Find out more and take our survey here.
Webinar: Medi-Cal Services For Children With Autism & The Family Focused Model Of Care
Family Voices of California will host a webinar on Aug. 23 detailing the available Medi-Cal services for children with autism, the process for getting these services and the proposed family focused model of care. Our webinar presenter is Dr. Clayton Chau, Regional Executive Medical Director at the Mental Health Network, St. Joseph Hoag Health/Providence Health System.
Reminder: Submit Your Project Leadership Training-of-Trainers RFA By September 1
Family Voices of California is extending an invitation to California organizations serving families of children with special needs to send one representative to a two-day Project Leadership Training-of-Trainers workshop in San Francisco (Oct. 2017) or Los Angeles (Nov. 2017).
Project Leadership is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Funding is provided by the Lucile Packard Foundation for Children’s Health.
Note: Participating organizations will receive a $500 stipend to offset travel cost.
To review the request for application, click here.
The Well Visit Planner website allows parents to create custom guides for upcoming well-care appointments that are based on national recommendations. The guides are created by combining key issues and top priorities specific to each family and are intended for use with children 4 months to 6 years old. To begin the questionnaire and create your own well-visit planner, click here.
Pediatric Primary Care-Specialist Interface: A Call For Action
This new article from The Journal of Pediatrics presents key issues related to the primary care and subspecialty interface in the context of the family-centered medical home model. It reviews recent trends in health care delivery that create the imperative for better collaboration between primary and subspecialty medical care for children with complex special needs, as well as acute and chronic conditions. To read the article, click here.
OPPORTUNITY FOR INPUT
Highlight A Promising Practice Or Innovative Model Related To Pediatric Medical Home Implementation
The National Center for Medical Home Implementation (NCMHI) is collecting promising practices and innovative models related to pediatric medical home implementation. All clinicians, practices, family organizations, community-based organizations, state agencies and other stakeholders are encouraged to apply. Applications will be reviewed by a panel and selected entries will be published on NCMHI’s website. For more information, click here.
WEBINARS
August 16: Mental Health Parity: Ensuring Equal Access to Treatment For Children And Youth In California
This piece is part of Project Leadership In Action, a series highlighting some of the outstanding work our graduates have been involved in.
Children’s Hospital Association held their 13th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. July 12-13. Our family, which includes 7-year-old Evan who has multiple congenital anomalies, was asked to represent UCLA Mattel Children’s at the event. Much like a Family Voices of California (FVCA) Health Summit & Legislative Day, we were prepped upon arrival for our meetings with legislators the following day. In fact, the entire legislative day mirrored our experience at FVCA’s Health Summit in Sacramento this February.
We were fortunate to meet with Democratic House Leader Nancy Pelosi, California State Senator Kamala Harris, and Congressman Tony Cárdenas (from California’s 29th congressional district). We also met with staff from Congresswoman Lucille Roybal-Allard’s and Congressman Ted Lieu’s offices.
In our meetings, Evan and I told his story and explained the critical role Medicaid funding plays in our everyday lives. We touched on Regional Center funding and how Evan received speech, physical, and occupational therapies through their Early Intervention Services. We spoke of In-Home Supportive Services (IHSS) as I am Evan’s primary care provider through the program. Through IHSS, I am afforded the opportunity to be with my son 24-hours a day — no one is more attuned to him than myself. There have been specific instances where I, noticing a nuance in his behavior, have been able to get him the care he needs before it becomes a full-blown medical crisis. I believe the IHSS program has saved Evan’s life. In our meetings, we also spoke on the importance of mental health services being available for all, and what life was like before, and after, Evan was accepted into the Medi-Cal program. In short, we’re not bankrupt because we have Medi-Cal, but we easily could have been without it. Additionally, we advocated for the continuation of the Children’s Health Insurance Program (CHIP) funding, which is set to expire late September, and showed our support for the ACE Kids Act, which aims to improve care for children with medical complexity.
I covered most of the heavy stuff while Evan charmed whomever we spoke with. He was quizzed on his state capitals (he knows them all), personally escorted to the House floor by Leader Pelosi, and then led back to the floor by Rep. Tony Cárdenas where he voted on an issue for the Congressman. At his last meeting of the day, Evan secured Senator Kamala Harris’ vote for his future presidential run and was even featured on her Facebook and Twitter pages later that evening. Everyone we spoke with thanked us for telling Evan’s story and explained that this is the most valuable contribution we can offer to the cause: boots-on-the-ground advocacy is where real change happens. We were told our story was eloquent, impactful, memorable, and we were encouraged to tell it often.
My experience with FVCA Project Leadership empowered me to confidently share our experiences. Having a working knowledge of how legislation is created enabled me to feel comfortable when speaking with our legislators. Learning how to effectively tell our story proved invaluable. Because of Project Leadership and Family Voices of California, Evan and I were fully equipped to be most effective advocates with our time in front of our representatives. We’re honored to have had the pleasure to represent all medically complex kids — a privilege we took to heart. Our time on The Hill was a dream come true. Thank you Family Voices of CA for preparing me for every moment of it.
This newsletter was sent Aug. 1, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights and action items that affect children and youth with special health care needs, please sign up here.
RFA Reminder: FVCA is inviting CA organizations serving families of children with special needs to send one representative to a Project LeadershipTraining-of-Trainersworkshop in SF/LA. For more information, click here, and to register for an informational webinar, click here.
Reflections: ‘Disability Community Advocacy Made The Biggest Difference’
After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click here.
Alison Barkoff, Director of Advocacy at the Center For Public Representation
This success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.
Alison Barkoff, Director of Advocacy at the Center For Public Representation, shared her thoughts on the devoted work of the disability community during the past few months. To read her blog post, click here.
RESOURCES
Updated American Academy Of Pediatrics ‘Principles‘ Aims To Ensure Children Have Affordable Access To Quality Care
Originally published in 2010, the Principles Of Child Health Financing outlines how the design, financing and payment policies of a health care system can ensure children have access to universal coverage with quality, affordable health insurance that covers the full scope of essential pediatric benefits. The updated version now emphasizes that Medicaid and the Children’s Health Insurance Program are hard-won gains for children’s health care and should be upheld in any future legislation. To read the updated policy, click here.
New Tip Sheets On Improving Quality Of Care For Emergency Department Patients With Sickle Cell Disease
Pediatric Symptom Checklist To Assess Emotional And Behavioral Problems
The Pediatric Symptom Checklist from Massachusetts General Hospital can be used by parents and pediatricians to assess how 4-16 year-olds are functioning in different settings. The screening can help families recognize potential behavioral problems so that appropriate interventions can be initiated as early as possible. To access the checklist, click here (available in multiple languages).
Survey: Does Your Child Receive California Children’s Services (CCS) In A County Scheduled For Transfer To Medi-Cal Managed Care Plans?
Beginning next year, the Department of Health Care Services (DHCS) will transition kids currently enrolled in CCS in these 21 counties into Medi-Cal managed care plans to better integrate their care.
If your child receives CCS services in one of the above counties, FVCA invites to share your questions and concerns about the planned rollover so that we may assist you in this transition.
To take our survey, click here (for Spanish, click here). For more information about the Whole Child Model click here, and for county-specific phase-in information click here.
Survey: Kidsdata Seeking Feedback On Website And Resources
Kidsdata.org, a program of the Lucile Packard Foundation For Children’s Health that provides high-quality data on children in California, has created a survey to help inform their website and outreach activities. The questions should take an estimated 10 minutes to complete, and everyone who participates will be entered in a drawing to win one of five $50 Amazon gift cards. To take the survey, click here.
First 5 Contra Costa To Host Focus Group For African American Families
First 5 Contra Costa will be holding a focus group on Aug. 14 for African American families with young children to learn how the organization can provide better support and programs for this population. The meeting will take place from 6-8 p.m. in Concord. Dinner, child care and a $40 stipend will be provided. To register, call (925) 967-4709.
WEBINARS
August 2: Debunking Achieving A Better Life Experience (ABLE) Myths
By Alison Beier, 
