Saturday, October 30, 2021

Research Opportunity: Take This Survey On Insurance Coverage and Rare Diseases


Our friends at the University of Nebraska Medical Center need your help. Genetic counseling student, Michelle Willes is conducting "
a research study to better understand the experience of navigating payment and insurance coverage for medical costs associated with a rare disease diagnosis." She invites participants to complete this anonymous survey which will ask about their rare disease diagnosis, experience with health insurance coverage, and awareness of financial resources for people with rare disease diagnoses. The survey should take approximately 15-20 minutes to complete.




Monday, October 4, 2021

Follow Us On Twitter @CCAKidsTweet


Follow us on Twitter at CCA Kids Tweet. Image of small bird at top and all text in white on blue background. white children's craniofacial association logo at bottom above words "@ccakidstweet"
Follow us on Twitter @CCAKidsTweet

Explore our Twitter account while Facebook and Instagram are temporarily unavailable. Our social media account is just as vibrant and exciting on this platform, too. 

Saturday, October 2, 2021

Meet The McLaughlins

Another newsletter article coming at you from our July E-Network. Let's meet the McLaughlin family and learn more about Teddy's story. 

You can read more stories like the McLaughlin's in our newsletter archive or on the current E-Network webpage, too.  

We're the McLaughlin family, and our son Teddy is a Golden kid.

In spring of 2009, we had a beautiful 2 1⁄2 year-old daughter named Charlotte Charlee. I had a wonderful husband, Doug, and I was 36 weeks pregnant with our son Because I am a Type I diabetic, my OBGYN and I discussed for weeks when we were going to deliver the baby I had a lot of ultrasounds and other testing but they had not identified anything wrong except some extra amniotic fluid and somewhat erratic blood pressure. At this point, it was decided that I would go to the hospital for monitored bed rest. It was a compromise between my doctors and me. We were just trying to let Teddy cook for a couple more weeks. Teddy’s big sister, Charlee, had climbed into the hospital bed with me to watch cartoons, and Doug and my mom were chatting about plans for the next few weeks. It was late afternoon when the nurse came in and said that no one should leave yet. My OB/GYN was on her way in, and there was a good chance I was going to have our baby that night because there was something she didn’t like in my bloodwork. We knew that there was a chance Teddy’s lungs may not be fully developed, but overall, we were excited to welcome our son. It was March 31st, and as they prepped me for a C-section, we started taking bets about whether we would have an April Fool’s baby or not. We knew that either way we would have to spend some time the next day convincing everyone that Teddy had arrived, and it wasn’t just an April Fool’s Day joke. What we didn’t know was that our lives were about to change in a way we never imagined.

Theodore ‘Teddy’ was born at 11:17pm. They told me to kiss his cheek and whisked him away to the NICU. It was about 3:00am by the time they had Teddy stabilized and had me settled into a room. One of the neonatologists came in to see me. They let me know that Teddy was on a CPAP but was generally doing well. However, his ear was not formed on the right side microtia and atresia, and his lower jaw was smaller than normal micrognathia. At this point, there was no diagnosis. He spent 10 days in the NICU gradually learning how to eat and regulate his body temperature. He had failed his hearing test. When we took him home right before Easter on an apnea monitor. They told us to feed him every three hours around the clock, and he would likely “grow out of” most of his issues. We were also to followup with the neonatologist, geneticist, our pediatrician, and an ENT for his hearing.

Teddy spent the next 1 1⁄2 months struggling. When he was born, he weighed 6lbs 3oz , and we had no idea the amount of work it would take over the next several months to get him to 7lbs. He spent all his calories eating and breathing and wasn’t gaining weight. He looked like a puppy who has yet to grow into his skin, and he had a light blue tint to him. We had an appointment scheduled with an ENT from Children’s Hospital of Philadelphia CHOP because of his hearing issues. What we didn’t know at the time was that he happened to be one of the best airway doctors on the East Coast and was the blessing we needed. Up until that point, no one had really discussed with us the challenges Teddy was experiencing due to his small lower jaw. The first time that we saw Dr. Jacobs, he asked me a lot of questions that I didn’t have answers, Teddy still didn’t have a diagnosis, and the neonatologist thought he was doing okay. You could tell Dr. Jacobs was frustrated, but he had us make another appointment for two weeks later. The second time we saw him, he was very concerned. He started to make a list of the tests that Teddy needed, but then he stopped and said, “I’m going to get him a bed at CHOP. Feed your baby, and call whoever you need to.” Although it was scary when he told me to put Teddy in the car and take him directly to CHOP, there was also some relief. Hopefully, I was finally going to get some of the answers that we craved and some help for my tiny Teddy. It was challenging getting appointments in the real world, and Dr. Jacobs was the first to confirm what my “mommy sense” had been telling me all along that more was wrong than what they were saying. When we got to CHOP, Teddy saw just about every specialist in 3 days. We often refer to CHOP as one-stop shopping. They are great about coordinating appointments to minimize trips to Philadelphia and surgeries to minimize anesthesia. We would keep a running list of things for next time. They listened to my concerns and involved me in decision making. He was finally diagnosed with Goldenhar syndrome. He got an NG tube so that he would stop aspirating his food and didn’t have to burn as many calories working to eat. He finally started to gain weight a few ounces at a time. Dr. Jacobs, Dr. Bartlett, Teddy’s plastic surgeon, and the entire craniofacial team finally started giving us the answers that we were looking for since he was born.

About a week later, Teddy had a tongue-lip adhesion (TLA) in order to open his airway. Initially it seemed to be helping, but unfortunately, it became apparent around the 4th of July that it was not going to be the answer we were hoping for. We were told early on that kids with Teddy’s condition usually responded well with TLA surgery, but some would need jaw surgery and rarely a tracheostomy. I’ll never forget that night when I sat at the nurses’ station with Teddy’s plastic surgeon looking at his scans and talking about his options. His jaw was too small and fragile for distraction, and we would have to wait until his ribs were big enough for grafting. It was pretty clear that Teddy was going to be one of those rare kids who needed a trach. This was devastating to us initially, but we soon learned the doctors had a bigger plan for Teddy that would unfold over the next several years. This would be the first step to let him breath more easily, allow him to start putting on weight more easily and would eventually keep his airway safe as he learned to eat again, and most importantly let him stop struggling so much.

During this time, I moved into a room at the Ronald McDonald House in Philadelphia, another blessing. Not only did this provide me with a hot meal and a warm bed each night, but it also gave me an opportunity to spend time with Charlee and Doug outside of the hospital. We quickly formed a core group of friends who were also going through some of the same things. It was nice to have others who understood the ups and downs of NICU life. We all cried together during the rough times and celebrated together during the happy ones.

It rapidly became apparent that Teddy would rarely take the easy, straight-forward path. When he had a Nissen fundoplication to relieve his reflux and his G-tube placed, he ended up with dumping syndrome which required a special diet and careful monitoring of his blood sugar. In addition to his microtia and atresia on his right side, Teddy had a narrowed canal on the left side which also affected his hearing. We got him a traditional hearing aid on the left side early on, but he also ended up with several ear tubes placed in that ear to prevent the buildup of fluid which further affected his ability to hear.

In the days before Thanksgiving, we underwent all the training needed to care for Teddy, so he was finally stable enough to take home with nursing care. At home he continued to have physical therapy (PT), speech, occupational therapy (OT), and a teacher of the deaf (TOD), but his best teacher was his big sister, Charlee. She would get down on the floor with him and get him to do things that nobody else could. She adores her little brother and she was so happy to have us all home as a family again. In the spring when Teddy turned one, we had a huge party. We wanted to thank all the people who helped us get to that point as there were definitely times during that first year we weren’t sure we were going to make it.

When Teddy turned 2, he started in the Ivy Nursery at the Lake Drive School in Mountain Lakes. Around this time, Teddy also trialed a BAHA on a soft band. I was really impressed with how much his hearing seemed to improve. He would later have it implanted when he was older.

While at Lake Drive, we knew that it was important to teach him total communication so that he would have options to make himself understood. When Teddy was younger, sign language really helped to keep him from getting frustrated while he was having intensive speech therapy and learning to speak. It also came in handy when he was 5 and finally had his rib graft jaw surgery, and his jaw was wired shut for a month. We had planned on this surgery opening his airway and realigning his jaw, but it turned out that it wasn’t sufficient. Before he could be decannulated, he also needed to undergo jaw distraction, and before his stoma could be closed he had to have his adenoids removed again. Yes, they can grow back.

When he finally had a quiet, clean sleep study and could finally close his stoma, we were so excited. Teddy went to school at Lake Drive through kindergarten before transitioning to Wildwood in Mountain Lakes and then elementary school in our home district. After spending years traveling over an hour each way to go to school, it was a novelty to only drive across town. He finally got to ride on a school bus for the first time! Our district provided Teddy with a teacher of the deaf in the classroom full time in elementary school to help with learning strategies, to learn to advocate for himself, and to act as extra support. Now, Teddy goes to the intermediate school in town (5th & 6th grades) which is right around the corner from our house. He is down to minimal TOD support, and he is the primary person responsible for his hearing equipment.

When Teddy was eight, we had a discussion about his “little, closed ear” as he referred to it. This was a surgery that we had always intended to let him have a major say in. His inner ear had not formed on the right side, so opening his canal and recovering hearing was not an option. He went back and forth a couple of times before deciding to go forward with it. A couple of weeks after his ear reconstruction, we noticed that part of the graft didn’t take. This resulted in a second surgery to have part of the graft replaced. Like a lot of things in Teddy's life, it turned out to be more complicated than was originally planned, but he’s happy with the results, which is the most important thing. We’ve always been open to talking about Teddy’s condition. When he was little we made sure that Charlee and Teddy had age appropriate answers for questions that other kids inevitably had. “What happened to his ear? – It didn’t grow right in my mommy’s belly. The doctors will fix it when he’s bigger.” “What’s that on his neck? (referring to his trach) – It helps him breath better.” Most of the time, we would find that they were merely curious and would soon be off playing together.

Now that Teddy is older, we have done several presentations at schools, talking about his journey and the importance of kindness. Our first CCA Retreat was in Virginia in 2017. Diana Sweeney from CHOP called me and said that she wanted to send our family on Retreat! I wasn’t entirely sure what to expect, but when we walked into the lobby of the hotel, Teddy declared, “Mommy! These kids are all just like me!!” I instantly knew that we were in the right place. There was a group of boys who are all the same age as Teddy that quickly became friends. Charlee made new friends as well. Everyone was warm and welcoming. These were siblings and parents and kids that truly “got it.” When we arrived in Salt Lake City for our 2nd Retreat, we were greeted with hugs and happy tears.

It felt like not a day had passed, and we picked up right where we left off. Teddy is now a charming and amazingly resilient 12-year-old who dances (hip hop, tap, and jazz) and sings ("Hamilton" is a favorite) his way through life. He loves the beach, football and Minecraft.

He’s come a long way, but there are still a few things in progress. He’s on his third round of braces, trying to align his teeth and improve his bite. He still needs at least one more major jaw surgery at some point in the future. He’s still figuring out the right level of “sharing” with his new friends at the intermediate school. Most of them have no idea of how much he’s been through, just that the “box” on the side of his head helps him hear better.

To them, he’s just Teddy.

To us, he’s so much more.