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.
