Genny Jesse gave birth to a beautiful baby girl named June, who was born with an undiagnosed neurological disorder that was identified when she failed hospital screening tests. Not long after birth June started experiencing severe infantile spasms, sometimes hundreds to thousands each day. June’s condition worsened, she suffered from cortical visual impairment, developmental delays, nephrotic syndrome, and bowels that stopped working. June’s parents lived in a constant state of fear and worry about her health and future.
They were desperate to find a cure and as a result took June to one specialist after another and even moved hundreds of miles away from home to explore experimental therapies. Two months before her 4th birthday June’s kidneys failed, “she could no longer take in fluids without them pooling into her lungs. That’s when my husband and I decided to listen to June and what her body was telling us. She was ready to die. The thought that June wouldn’t live past childhood came to us late in her life. In hindsight, I think we would have benefited from clear, honest, and direct conversations from June’s physicians earlier on,” said Genny.
In her short life June saw 20 different specialists in 3 different states. Despite all the different doctors and medical attention, the family didn’t hear about palliative care until a year before she died. Genny said, “We had a fantastic relationship with nearly every one of June’s doctors. We trusted each of them, and I know they care deeply for their patients and their families. As a whole, however, I believe the system let us down by not introducing palliative care as soon as we were unable to control her infantile spasms. I believe it would have ushered us in to the next stage of her condition in a better way.”
Genny points out the important role of children’s palliative care in helping parents coordinate their child’s care when the growing number of specialists seems overwhelming. She also emphasizes that palliative care is important to educate parents on what to expect in their child’s life and likely death. In hindsight, Genny said, “I wish someone had been clear and upfront with us when we were unable to control her infantile spasms. This wouldn’t be an easy approach, I know. I would have been angry with you. I would have cried, maybe yelled, and probably stormed out. But as a mother on the other side of it now, I would much rather have known our likely fate.”
In the last year of June’s life, her palliative care doctor and parents worked together to ensure she was comfortable and peaceful. In closing, Genny said, “For parents like me, some hardships are out of our control and some are in our control. Making life easier for families like ours through palliative care is in our control. When you see the writing on the wall, don’t be afraid to recommend palliative care. It could be just the thing the family needs.” To read the full blog, click here.