“Most people don’t think of hospice as hope,” said Hamilton, 27. “It’s not your first thought to say, ‘we’ll pull through this.’ But hospice is what gave me hope.”
A few months into her pregnancy Hamilton contracted Cytomegalovirus (CMV), a common virus that can pose a threat to the unborn. Subsequent testing showed her amniotic fluid was low and that the baby had sustained brain damage.
Hamilton got the bad news when she was six-and-a-half months pregnant, along with a referral to Hospice of the Valley’s perinatal and pediatric programs.
By then Hamilton was angry, sad and scared. She met Pam Roman, a soft-spoken nurse who oversees the not-for-profit agency’s services to pregnant women carrying babies with a poor prognosis, and Pam Ruzi, an upbeat social worker.
While family members shied away and doctors talked about medical worst-case scenarios, Roman and Ruzi tried to boost Hamilton’s spirits and provide reassurance during the final weeks of her pregnancy.
Still, the young, single mother-to-be often felt despair and a grim sense of resignation. “I took the stroller and the car seat back to the store just before I went into labor,” she said. “I was going to use the money for funeral expenses.”
On Nov. 15, 2012, Hamilton, 20 family members spanning five generations and the Pams reported to Banner Good Samaritan for the scheduled delivery. “When I heard him cry, my heart just melted,” Hamilton said.
Kaleb Hamilton was born with adverse physical conditions, including seizures, vision impairment and cerebral palsy. “It was happy and sad at the same time,” Hamilton said. Kaleb was admitted to Hospice of the Valley’s care.
The next day, mother and son moved from the hospital to Ryan House, a nonprofit organization in Central Phoenix that partners with Hospice of the Valley to provide respite, palliative and end-of-life care to children with life-threatening conditions.
Hamilton had previously decided that she did not want artificial means taken to sustain Kaleb’s life. No feeding tubes, no ventilators, no electronic monitoring. At Ryan House, mother and son shared the same bed in a family suite.
“Ryan House offered me a place to be a mother to my child even if it would have only been for five minutes or a day,” Hamilton said. “My son would have had to stay at the hospital otherwise because I was not allowed to take him home. I believe in my heart that if I didn’t have that opportunity to be a mother to him and hold him in my arms and give him all the love possible that my son would not have pulled through. Everyone at that facility is so loving, upbeat, and blind to any ailments a child may have. The biggest thing is they are accepting — and I know in my situation it helped me to be strong.”
Kaleb made it home—not only for Thanksgiving but for however long forever will be.
On April 24, 2013, he “graduated” from hospice to pediatric palliative home care for children with chronic illnesses. “Every week he gets stronger and stronger,” Hamilton said.
Through Ruzi, Hamilton has enrolled Kaleb in state services for the disabled and those with severe vision issues. “A lot of these services I wouldn’t have known about if not for Pam,” Hamilton said. Ruzi calls upon the family as needed to monitor progress, assist with coordination and offer support.
Hamilton’s Glendale apartment is filled with signs of love for Kaleb, a sweet 1-year-old with a wide smile. On the wall are photos taken at birth by a volunteer photographer. Next to that is a plaster cast of Kaleb’s newborn feet, complete with little toes that turn out just like his mother’s. On the sofa are hand-made physical therapy mats and colorful quilts sewn by his loving grandmother Lori, who also provides financial support since Julie is Kaleb’s full-time caregiver.
“My hope for Kaleb is whatever abilities he has I can provide the resources for him to do the best that he can,” Hamilton said. “This boy is going to walk.”
Beverly Medlyn is communications director for Hospice of the Valley in Phoenix, Arizona.
With thanks to the USA edition of ehospice for this article.