The Surles Family Story
Chris and I found out in December 2012 we were having identical twins. It was a high risk pregnancy and I ended up delivering at 33 weeks with preeclampsia. I was offered the Ronald McDonald House across from GHS while the girls were in the NICU so I could continue to feed them. I was grateful for the offer but was able to make the 40 minute commute each day so I could keep my oldest on somewhat of a normal schedule. I truly thought the roughest part of our journey was going to be behind us after our NICU stay.
While the twins were in the NICU, genetics was called to look at Lane. Born at 4lbs 11oz, she presented with neonatal hypoglycemia, enlarged abdomen with an umbilical hernia and her tongue rested outside of her mouth. The NICU team called in Greenwood Genetics and at 2 days old we were told they were testing her for Beckwith Wiedemann Syndrome (BWS). BWS is an overgrowth syndrome that is normally sporadic (though it can be inherited) in 1 in 13,000 births. We were told Lane would grow quickly, including her organs and she would need to be monitored for cancerous tumors until she was 8 years old. Many children with BWS end up needing a tongue reduction as well.
After a tumor scare in February 2014, we decided with a team of doctors and therapists that Lane would need a tongue reduction to improve her feeding, obstructive sleep apnea and future jaw alignment. Local doctors had only performed 2 or 3 of these procedures and never at our local hospital. After much research, we found the world’s expert Dr. Jeffrey Marsh at Mercy Hospital in St. Louis, MO. In April, we made the 13 hour drive with Lane for her to undergo the tedious surgery.
You never want to have to make this choice for your child. We did not want to leave her side and luckily the Ronald McDonald House made it possible for us to both we close at all times and had a room in the hospital with snacks, drinks, WIFI and places to rest. We slept in shifts at the RMH so one of us could always stay with her. The RMH was beautiful and we met another family on the same journey as us. We met many families at the RMH from every walk of life and with varying degrees of medical needs. It was truly a humbling experience.
Before the twins, I never could have dreamed of needing the Ronald McDonald House. We were a middle class family with steady dual incomes and company provided health insurance. When the girls were only 6 months old and two days after a mass was found on Lane’s kidney, we found out my company was discontinuing health insurance at the end of the month. Due to this and the ongoing medical needs, I left my job for our family business. Our financial future was now unpredictable. Having the RMH was certainly a relief for the financial reasons but the gift of the RMH is much greater than financial.
When your child needs major surgery or is very ill, your world seems to be in a tailspin. Ronald McDonald House is a gift that helps ground you. You see you are not alone in your child’s medical journey. You see your plight is recognized and an organization has been formed to support you. You have one less detail to take care of and you feel a sense of relief. Our stay at Ronald McDonald House was short but we were greeted warmly by staff, we were treated to home cooked meals and we had a home base while thousands of miles from home. We were truly grateful for the gift many times over.