Samuel's Story
How and why to pursue a diagnosis in a special needs child
Several years ago I had the good fortune of meeting a woman named Danielle. She and her husband were living near the military base where she served as a medic in their ER. She was a Gulf War vet and went on to serve in the military for over 20 years. While stationed there, they found out that she was pregnant with their first child. Pregnancy was challenging, with the requisite 24 hour nausea and extreme fatigue, but she rested, kept up her fluids and found other small ways to cope. Little did she know that the worst was yet to come.
When they went for their first ultrasound, it was discovered that the little boy she was carrying had a neural tube defect, where the lower part of the spine did not close properly in early development. He also had hydrocephalus, which is where there is a build-up of fluid in the cavities deep within the brain. Untreated, this can put pressure on the tissue that makes up the brain, causing permanent damage, seizures and more. As you can imagine, this was shocking new, terrifying in the extreme, but the silver lining here was that she participated in usual prenatal care, which included this ultrasound, and the problem was discovered early.
What this meant for her was that she had a cesarean birth and her baby, whom we will call Samuel, was whisked away for intensive care treatment and surgery shortly after birth. While it would be tempting to say that the surgery was the end of it and that he was a fully functional child thereafter, there was much more to come. After recovery he was sent home with an apnea monitor that went off at all hours, continuously disrupting everyone’s sleep to alert them that the infant might not be breathing enough, or at all. She had appts with specialists for the brain, the urinary tract, the bowels, physical therapy, case workers, above and beyond the regular care provided by Samuel’s pediatrician.
How did she manage it all? How did she have access to all these specialists? Let’s answer these questions in reverse.
When the military identified that she had a child with spina bifida, as they had seen in other military members, they kept her at a base with these other families. In this way, once a month they offered a “Spina Bifida clinic”, where all these specialists would be present and the families could cluster all their appointments on one day each month. It also meant that case workers could help coordinate care provided off base and the families could access each other for support. Now, I don’t know if that program is still in place, but it was there when she needed it and she made full use of it.
As for how she managed it, that answer is less straight-forward. When your child is born with a disability, especially one that involves surgery very early on, problems with the basic tasks of breathing and other life-threatening circumstances, it is a rude awakening. What she did well was to participate in her prenatal care, because that started the cascade of events that lead to a team of specialists, both within the military system and a major medical center focused solely on children with similar special needs, who were there to provide high level care to her high needs child. Once these teams were coordinated for her, she was religious about going to all the appts. That seems self-evident, but sometimes parent choices or life circumstances interrupt care of a special needs child, which can have long-lasting effects. When she eventually moved to another state where she had a larger support system, she remained connected with the major medical center until Samuel aged out at 21 years old. She maximized the use of her insurance plan to assist with paying for stays when they flew back for subsequent visits and surgeries, or stayed in a Ronald McDonald house, when available. She did a lot right and her son is as functional an adult as he likely had any chance of being, based on his condition at birth because of her advocacy and participation in his plan of care.