Our family traveled to Washington DC the last week of July as part of the National Association of Children’s Hospitals Family Advocacy Day to share our story with members of Congress and to advocate for Children’s Hospitals Graduate Medical Education (CHGME) as well as Medicaid.
When we were asked to do this, we said yes without hesitation. Pediatric specialists are a large part of our life. Without them, my girls wouldn’t be here and we think it is important that all children have access to the medical care they need.
My twin daughters, Reese and Ryleigh, were born premature, weighing only 2 pounds each. They are survivors of a very rare identical twin pregnancy complication called Twin Twin Transfusion Syndrome (TTTS) that required fetal surgery at Cincinnati Children’s at 18 weeks gestation.
Shortly after their birth at 26 weeks gestation, Reese became very ill and required long-term intubation. As a result, she developed scar tissue in her trachea causing complete blockage of her airway. At three months old, she was flown from our local hospital to the University of Michigan where they placed a tracheotomy tube to allow her to breath. It soon became apparent that Reese had several other complications which would require numerous lengthy surgeries (stomach surgery, heart catheterization to open a closed valve and removal of her right middle lung). Reese remained hospitalized until she was 11 months old. At home, she required ventilator assistance until she was 2 and today still has the tracheotomy and a feeding tube.
The four years we’ve been parents have been full of ups and downs with both of our girls’ health, but especially Reese’s. We knew that Reese would someday require reconstruction of her airway if we ever wanted to get rid of her trach. We have never heard her laugh, cry or vocalize a word because of that trach.
Knowing that we needed to find the best care possible for our little girl, we researched and ultimately found Dr. Robin Cotton at Cincinnati Children’s. We were reassured that we made the right decision after Dr. Cotton said Reese was one of the more severe cases he had ever seen.
We decided that Reese would remain in the care of Dr. Cotton and his team, undergoing her first airway reconstruction in August 2010 and a second in May 2011. During the time leading up to the first surgery and over the last couple of years, we have come to know Dr. Jonathan Ida well. Dr. Ida was Dr. Cotton’s fellow until just recently and while we were concerned early on that we didn’t see Dr. Cotton on a daily basis, it was clear that Dr. Ida had it covered. He became more than just our daughter’s doctor. He is a friend and a source of comfort in our lives.
While we are disappointed that Reese’s trach had to be replaced after the most recent surgery, we are grateful that we may still have other options and we remain hopeful that Reese will one day be able to vocalize her thoughts and emotions.
During our day on Capitol Hill, each and every person we spoke with met us with respect and an open ear for what we had to say. We started by telling our story. We then stressed that our children are not just small versions of adults. They require specialized care to not only deal with the physical and anatomical differences but more importantly the emotional and mental aspect of treatment and recovery. This is why the funding is so critical to ensure our future doctors receive this extensive training. I can only hope we made the impact we were hoping for and gave them a different perspective to think about when making their decisions on how to spend taxpayer dollars.
Our trip was exhausting, but so rewarding. I hope that children across the nation will benefit from our opportunity in Washington D.C. and that the congressmen and women that we met will remember my girls when they are presented with decisions about CHGME and Medicaid.
To join the Sunderland family in their efforts to spread messages to congress to reauthorize the CHGME program and prevent drastic cuts to Medicaid, please write directly to your congresspeople or use the resources provided by N.A.C.H. to reach several congresspeople at once.