During the opening monologue for his show on Monday night, Jimmy Kimmel talked about the birth of his son, Billy, on April 21. Kimmel's son was born with a life-threatening heart defect that required surgery hours after he was born. Kimmel explained that Billy will also need subsequent surgeries as he gets older, and made an emotional plea to Congress to seriously consider the effect their decisions about health care will have on families. Kimmel also encouraged viewers to donate to the hospitals that saved his son's life. Here are several organizations to donate to that help kids like Jimmy Kimmel's son, — many of which provide invaluable support for families, too.
Kimmel gave a shout out to Children's Hospital Los Angeles, where his son received the first of several surgeries to correct a congenital heart defect called pulmonary atresia. While not every parent will be confronted with the threat of a heart defect in the early hours of their newborn’s life, there are a number of conditions that can be life-threatening and make for a frightening situation. There are also many reasons a newborn might require a stay in the neonatal intensive care unit, or need some form of surgery shortly after they’re born. Luckily, there are lots of resources and support groups out there for families no matter what they're facing.
Condition Or Disease-Based Organizations
There are support groups and charities for just about every disease or condition imaginable. As soon as doctors are able to figure out what’s causing a child's illness, that's a starting place for parents when it comes to figuring out how that diagnosis will change their lives. Often times, there might even be special nurses or counselors in the hospital who can help parents make critical, timely decisions about their baby’s healthcare.
The National Organization for Rare Disorders also works to provide education, support, and resources to families all over the world who are dealing with the unique challenges of conditions or diseases for which there has been little medical research or breakthroughs.
If a baby is born in a hospital that doesn’t have a special team of doctors, nurses, and surgeons who specifically work with infants, they may be sent to the closest hospital that has a more specialized pediatric faculty. Children’s hospitals around the world are staffed by doctors and nurses who have been specifically trained to work with babies and children. These teams work together to diagnose and treat, as well as support families, sick children.
The Children’s Hospital Association offers an online tool families can use to search for hospitals by size, location, healthcare system, and name. They also provide advocacy tools that are helpful for parents who are trying to navigate their child's needs — whether it be with hospitals, health insurance companies, or pharmacies.
Support For Families
If a child requires a lengthy hospital stay, it can be very difficult for parents to accommodate — especially if they have other children at home. Some facilities will let one or both parents stay in the child’s hospital room for stretches of time, but even the best hospitals don’t have that many amenities. Finding childcare for siblings, traveling to and from the hospital, taking time off work or school, and perhaps even staying in a hotel can all add enormous stress to a family. Not to mention it adds cost atop mounting medical expenses.
That being said, some hospitals do have spaces to accommodate parents while their child is hospitalized, or they may have reduced rates at hotels that are close by. There are also a number of charitable organizations — the most familiar of which is the Ronald McDonald House — that help families arrange a place to stay while their child is being treated or recovering.
For families who are struggling with medical bills, organizations like the UnitedHealthcare Children’s Foundation offer resources like grants, and the HealthWell Foundation offers assistance for things like copays on health insurance.
Parents can also discuss their needs with the specific hospital, or hospitals, that their child is being treated at. Patient advocates are often able to help a patient’s family wrangle all the decisions they need to make and point them in the direction of local resources and support. The important thing for parents to remember is that, while they may be overwhelmed and afraid, they aren’t alone.