Imagine sitting in a NICU with your brand new baby laying in a crib right beside you, fighting for their life. You’re sitting in a hard chair, with a fresh incision where they cut your abdomen open to perform an emergency C-section four days earlier. You don’t know when you last ate, or when you’ll eat again - but you vaguely remember that eating is important for breast milk production and your little guy. In fact, the only thing that is very clear in your mind is that it’s been 1 hour and 47 minutes since you put him down, and you have exactly 1 hour and 13 minutes until the next time you’re allowed to pick your baby up. Life itself is now measured in those 3 hour windows, and nothing else matters.
This was Amber Matyi, mother of three, and founder of Closely Held, a non-profit based out of Raleigh, North Carolina. Amber, and her husband Jon, experienced this scenario after the birth of their second and third children. Amber is RH(-), a condition that only matters if your child is RH(+) and they come in contact with your blood. There are shots available to minimize risk, and Amber received one when she was pregnant with her first child, Hannah, but during delivery the staff forgot to administer the second shot - and that’s when her problem started. It was six weeks after Hannah was born that the doctors noticed Amber’s antibodies were off the charts. They monitored her for 6 months, nothing ever came of it and they discharged her. Three years later, during her second pregnancy, there wasn’t an ounce of concern for her son, Isaac. Unfortunately, Isaac was born desperately ill. So ill, that they spent the first year of his life at a doctors office or in the hospital 3-6 days of every week. At the time, Amber and Jon lived 45 miles away from Wolfsons Children’s Hospital, which is 5 miles to close to qualify for Ronald McDonald housing. Loosely translated, that means they were on their own for gas to and from the hospital every day, and food. Amber estimates that food for one parent at the hospital is $25 a day - that’s $175 for just one parent, not including when both are there. In one month, she and Jon paid $500 to park their cars at the hospital. A few years later, in a different state and a different hospital, they would walk the same road with their third child, Lucca.
“You didn’t look needy”, the hospital staff told her was the reason they never mentioned the food pantries located throughout the pediatric wing, or the free meals for breastfeeding moms, or the lot where you pay $10 to park per week rather than the garage where you pay $12 per day. Nobody told her that you could get four free meals for your entire family - per week, or if you kept shuffling just a little bit past the bathroom (a unit and a half away from her son’s crib) there was a Ronald McDonald family waiting room with soft couches and a shower. They didn’t tell her because she didn’t look needy. And, she didn’t ask - because she didn’t know the questions to ask. Actually, she didn’t ask because mothers who are sitting beside their child while they fight for their life aren’t thinking about free meals or showers… their only thought is the life of that baby.
Once her children were healthy, Amber began to volunteer with the Patient and Family Center for Care at UNC Children’s Hospital helping other families like her, who need resources at the hospital but don’t know who to ask or how to get them. As she volunteered, she began talking about her idea of creating a website, or an app, something - anything - that could get resources into the hands of families quickly and would require very little of the hospital staff. After all, the doctors and nurses have a job to do - it’s not that they don’t want the families to have the resources, it’s that they’re concentrating on saving lives. One day, she mentioned it to the Director of the Patient and Family Center for Care and they turned to her and said, “That’s an incredible idea - do it.” As it happens, an app is too expensive and so is a website. A local pastor heard about her idea and helped her form a 501C3 called Closely Held.
Through Closely Held, Amber is working alongside UNC Children’s, helping them edit their Family Resource page on their website. Her goal is to have a single place that parents can go to, click the unit that their child is in, and then find ALL of the resources available to them on that page. In order to get the word out, that a website like this even exists, Closely Held is going to distribute HUG gifts. A HUG gift will be given to families whose children have been admitted to the hospital for any reason, and will include a $25 gift card usable at all cafeterias (and Starbucks, yay!), free parking for one week, and a comfort item based on the age of the child admitted, and a flyer that tells the family about the website. Eventually, Closely Held will subsidize 3 additional meals for families so that every single day that they’re at the hospital they can get at least one free meal for their family.
At $40 per HUG gift, right now Closely Held is distributing 10 gifts a month with a 5 year goal of getting one the hand of every single family admitted to UNC Children’s. Looking down the road, Amber wants this program implemented at Duke and Wake Forest. Honestly though, it’s such a practical solution that it should be in every single hospital in the country. Amber might not be saving lives with this organization, but she is definitely changing the experience of hospital stays at UNC Children’s Hospital - and as friends of numerous families who have experienced long hospital stays - we say thank you, Amber! You are filling such a practical need for so many people for years to come!
If you would like to learn more about Closely Held, or connect with Amber you can reach her at the Closely Held Facebook page. Closely Held is currently raising funds through a Go Fund Me account and if you would like to participate, you can donate here.