Blessed With Coffin Siris

I am the mother of 6 beautiful children,one of has coffiin-Siris Syndrome. He is my 3rd child. I did not know that there would be anything "different" about my child before he was born. I'm glad I did not know! We didn't notice he had any health issues at first. In retrospect,he did seem more limp than my previous babies. The first sign of trouble was when he wasn't waking on his own to eat. He would fall asleep too quickly during feedings and wasn't gaining weight.
I noticed that occasionally,when he breathed,his neck would suck in and it would make a straining noise. We decided to have him looked at by the doctor. When we took him in,he began to do the weird breathing in the doctor's office and turned blue around the mouth. The doctor sent us to Children's Hospital right away. Over the course of 12 days,they ran all kinds of tests on him. They told us his airway was collapsing in on itself,causing the strange breathing noise. He needed to be kept on his side or stomach so that gravity would hold his airway open. They learned that he was swallowing milk into his lungs when he ate,so immediately I had to stop nursing him. They put a nose tube in for his feedings. He also has very low muscle tone which is why he was so limp. They discovered also that he had severe sleep apnea. They put him on daily doses of caffeine to counter act the apnea. My poor baby was failing to thrive,but every syndrome they considered was eventually ruled out. They could not explain why he was so ill.
Finally,we were sent home with a strange car seat that lays down flat. Baby had to be laid down on his tummy while in the car. We had a stethoscope and various supplies for nose-tube feeding our baby, a breast pump for me. :-) Lastly,we had a foam wedge for baby to sleep on to keep his airways open.
We did not know if baby would ever eat without a tube,walk,talk,laugh or play. It took a couple of years to get a diagnoses of Coffin-Siris. My boy has always been the sweetest,happiest,smiley,loveable child you could ever hope for.He was the "easiest" baby of all my babies in many ways. He did not have a cry! I think he was too weak to cry. He would only fuss quietly. But he was mostly happy anyway. His smile lights up a room! I can't tell you how precious his first laugh was around age 1! He has the best sense of humor. He gets so tickled by random words like buggy and goggle! He is now 7 years old and quite healthy! He eats with his mouth,runs,jumps,boxes and wrestles his brothers. He dances with his sister,gives giant bear hugs,kisses and tells me he loves me! He adores babies and has since he was a baby himself! He is developmentally delayed,but very smart and never misses a beat! The only real health issue he has is the apnea,so he sleeps with a BIPAP machine.
I do not know what the future holds for my precious boy,but I have high hopes for him. He is every one of my other kids "favorite" in the family. Kids at church and school adore him! He is handsome,smart,funny and loving. I am so glad God gave him to me and not someone else! "But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong." And that is my boy,Harley. :-) I am so proud of him!
If you are a parent of a child with CSS I would LOVE to hear from you!

joyfullonehappy joyfullonehappy
1 Response Jan 14, 2013

Hi there my name is Emily and I cave coffin Siris Syndrome you can find me on facebook I have a page called coffin siris syndrome you can find me and there is another group with it to