Children’s Hospital Los Angeles is an organization close to my heart. I have volunteered there, as has the rest of my family, and I have seen firsthand the good work they do. CHLA has treated the children of several of my friends for everything from broken elbows to complications from prematurity to craniostenosis (a condition in which a baby is born without a “soft spot”, so the plates of the skull are fused rather than malleable).
My list of friends who have been helped by CHLA includes the lovely Jenny of Perfectly Disheveled, whose son Oliver was born with a lymphatic mass under his arm that was undetected until his birth. It’s a rare condition affecting only one in 50,000 babies, and CHLA has the expertise to treat it.
Jenny and her family have spent quite a bit of time at CHLA over the past seven months, with more to come. She tells her story much more eloquently than I could, and I encourage you to read it, because it’s what inspired her to launch #WeAreLucky, just in time for Mother’s Day.
Jenny and her husband are lucky – they could afford to take time off work to be with their baby while he underwent an MRI and multiple surgeries. They have a network of family and friends willing to help out at home with their older child, Jonah, while they are with Oliver at CHLA. And they’ve never had to think twice about transportation to the hospital – they live mere miles away, and they own a car and can afford gas and parking.
These resources – things that are so much a part of the fabric of our daily lives that we don’t even think about them – simply are not accessible to many of the families whose children are treated by CHLA. This means there are a lot of moms and dads who simply cannot be there for their kids, as much as they desperately want to be there.
Yesterday I attended a luncheon and tour at the hospital, and the stories I heard were eye-opening and a little harrowing. Hallie Stone, a social worker who has been at CHLA for nine years, told us that her prototypical patient parent is a single mom of three children who must work; it’s a parent whose support system is essentially zero.
This mom must make brutally difficult choices: does she buy groceries for her family, or pay for a taxi to CHLA to be with her child undergoing treatment? Does she spend the evening with her child at the hospital, leaving her other children home with no caregiver? Or does she bring her other children to the hospital with her, where they’ll have to spend hours unsupervised in the waiting room or possibly witness medical procedures that appear frightening and painful?
The result of this type of terrible choice is that small children routinely undergo medical procedures alone. Ms. Stone is a nephrology and dialysis social worker. Many of her patients come in three to five times a week for dialysis. These kids have a needle or a port placed in their body with no mom or dad by their side, and undergo the dialysis procedure all alone. At the end they usually feel sick, weak, and headachy. And then some of them travel home by public transportation, alone.
Even worse, undergoing treatment without a family member present actually impacts the outcome of care for these kids. Dr. Matt Smith, a pediatrician at CHLA, explained to us that having a family member at the bedside is highly beneficial in myriad ways. For example, multiple studies have proven that emotional well-being affects how a patient experiences pain. So parent presence results in reduced opiate painkiller use. Babies in the NICU also do demonstrably better with a parent nearby: the babies benefit from skin-to-skin contact, and drink more milk at feedings if a bottle is given by mom or dad rather than a nurse.
Parent presence also impacts the ability of the medical team to discharge a child from the hospital. Often, children go home with a complex treatment plan of multiple medications, therapies, and protocols. If a parent hasn’t been routinely around to learn about his or her child’s condition and what will be required at home, it is simply not safe to send that child home.
Whew. That’s a lot of information, and it’s emotionally overwhelming.
Now here’s the good news: we can help.
A donation of just $25 will actually move the needle for these children’s families. A mere $25 enables the social work team at CHLA to provide things like gas cards and metro vouchers, so the parent can physically get to the hospital to be present for their child. A single $25 donation can provide a parent with a gift card which can be used to compensate a caregiver helping with other children at home, again enabling a parent to be with their ill child. One donation of $25 will help a family with the kind of basic resources and logistics most of us don’t even have to think twice about.
Please visit www.chla.org/WeAreLucky and make a donation. If you can’t afford $25, even a few dollars will help. 100% of the money donated goes directly to the CHLA Social Work department. The head of the department will handle and apportion all of the money to make sure it is used as efficiently as possible to help the families with greatest need.
In addition to monetary donations, we’re asking you to spread the word. Please share this post or Jenny’s post, or a link to www.chla.org/wearelucky on your social media pages. If you’re on Twitter, we even have some pre-written Tweets for you to copy and share:
#WeAreLucky to be moms helping other moms. Join @Jennifer_Brandt help moms with sick little ones at @ChildrensLA. CHLA.org/WeAreLucky
@ChildrensLA treats 310k+ children every yr for chronic or acute illness. Join @Jennifer_Brandt to help moms in need CHLA.org/WeAreLucky
We are lucky, my friends. And Mother’s Day is right around the corner. This year, let’s help make things better for other moms, and other kids. We are lucky, and we can help.