Story about Saethre-Chotzen syndrome .

Dominic Lee & SCS

Jan 27, 2016

By: Dominic


 Dominic was born in May 2014, via cesarean. From day one he had some face asymmetry. His forehead on the left protruded out, his eye slanted down, and his nose was crooked (leaned to the left). Doctors said he was just smushed and would return to a more normal shape with rotation. 

Months of rotation did nothing, so it was second opinion time. Sure enough, in September he was diagnosed with right Craniosynostosis (premature fusion of his right coronal plates).

The craniosynostosis diagnosis then led us to seek specialists to determine if surgery was necessary. Gillette Children's Hospital in St. Paul, MN was were Dominic's journey really began. We met with his neurosurgeon and plastic surgeon and were told the importance of him getting cranial facial surgery. If left alone he could lose his eye and have major developmental delays.

December 2014 was surgery day, probably the hardest day of our lives. Having to hand off your sweet, innocent, smiling baby. We will never forget that feeling.

It felt like it took the whole day, in reality surgery was over in 4.5 hours. We were able to go into recovery and see our sweet boy. Seeing him hooked up to 20 different wires attached all over his body and his head wrapped in a gauze bandage, it was a surreal experience. You feel relief that your child is on the other side, yet scared and sad because of how your child looks with swelling and not being awake.

Day three of post operation and Dominic was discharged, he was doing amazing. Even had his eyes partially open! Pain management was a big thing for a week or so, then he was super baby, like nothing had happened.

Things would probably have gone different for Dominic, but he took a fall two months post operation. He was rushed to the hospital with a big bump on his head, but no one was too worried. He was acting like his normal happy, talkative self.

February turned out to be one of his worst months, yet also a blessing in disguise. Dominic, was pretty sick for a week. We took him in and he was diagnosed with an upper respiratory infection and sent home. Well two days later, his fevers were very high and he suddenly started vomiting. After this he was staring off to the side and wouldn't respond to my voice. He was limp and his breathing was so low. We rushed Dominic to the hospital where he was then air lifted to Gillette Children's Hospital. Our poor boy was having seizures.

The next few days were the worst ever, Dominic went in and out of consciousness and twitched with seizures. Another MRI was done and an infection was found under his reconstruction he had a subdural hematoma that was pressing up against his brain. Not only was that found, but they did the scan on his neck as well and found he also had fusion of his c2 and c3 spine. His c1 was severely malformed and pushing up against his spinal cord.

A blessing in disguise, Dominic could have had major problems if we hadn't found this early on. We were able to plan a surgery to remove a piece of bone from his c1 spine.

First he had to get better and kick the infection, so came a second and third surgery to remove the infection pocket and help drain the built up fluid. A month of hospital living and we were discharged. Still on medication for seizures and a pic line for his daily antibiotics. Eight weeks of antibiotics and we were done! It seemed like he had the line in for much longer. Daily medicine only consisted of seizure medication now.

Now it's time for his next surgery. We went ahead with his Laminectomy in the beginning of May 2015. Just before Dominic's first birthday. Surgery was a breeze compared to the previous hospital visit. Two days and two nights in the hospital and he was ready to go! This surgery was much different, Dominic decided he wanted to try to crawl and move much more than before. It made us realize just how much his c1 spine was hindering his motor skills.

Physical therapy was what really helped him get to do what he wanted. From day one this kid has been motivated to move and "do". PT has helped him to reach, all of his gross motor skills to the point of being right where he should be. 

Cardiology was our next specialist. Since, with SCS there are chances of cardiovascular problems. Lucky for us, Dominic was given a clean bill of health cardiovascular wise. No heart problems here.

Dominic loves to learn and do everything and anything. He loves people and he loves animals. His dog Cookie is his world. He is always very eager to learn the next thing or step. He is our super kid.

Now it is January 2016, we are getting ready for yet another cranial surgery. Continuing PT and starting speech therapy is our current day to day, "who knows what's next?!". We are and will always be on our toes with Dominic, but we have all become stronger because of his persistence and strength to keep going ♡

Know someone who should read this story? Share it

2 comments
1

My daughter Nyellie just had her FOA on the 21st and has an infection in her bone, and having other complications. My daughter also has seizures and was born December 2014! Our journey still continues but I am happy to hear Dominic is doing well! It is such a long road my husband, daughter, step daughter and niece have SCS too. But its nice to see others outside out family who knows how difficult it can be.

Commented 8 years ago ElainaNtony 11
0

Hope your baby girl is doing better, I wasn't aware that you had left a comment ♡ Dominic is the only one in the family that has SCS, so to talk and connect with others is great! At this time, Dominic is going through speech therapy and doesn't yet say any real words. He does a lot of grunting and pointing and some sign language. Did anyone in your family have issues with speech? 

Commented 7 years ago Dominic 31

Login or register to leave a comment


Saethre-Chotzen syndrome symptoms

Which are the symptoms of Saethre-Chotzen syndrome?

Saethre-Chotzen syndrome cure

Does Saethre-Chotzen syndrome have a cure?

What is Saethre-Chotzen syndrome

What is Saethre-Chotzen syndrome

Is Saethre-Chotzen syndrome contagious?

Is Saethre-Chotzen syndrome contagious?

Couple and Saethre-Chotzen syndrome

Is it easy to find a partner and/or maintain relationship when you hav...

Saethre-Chotzen syndrome prognosis

Saethre-Chotzen syndrome prognosis

Prevalence of Saethre-Chotzen syndrome

What is the prevalence of Saethre-Chotzen syndrome?

History of Saethre-Chotzen syndrome

What is the history of Saethre-Chotzen syndrome?