A Little Background

Hi All! I just wanted a place to write my thoughts down about what is going on in our lives. I will start from the beginning- the shortened version. After Connor was born Andrew & I both noticed a large bulge on the side of his ear. We asked the Doctor about it and she told us that it was just an enlarged mastoid bone- OK nothing to be worried about. Upon leaving the hospital Connor failed his hearing test in his right ear. We went back a month later and it was confirmed that he is deaf in his right ear.We later learned after a scan that his cochlea is missing coils.  We were told that since he is deaf in one ear that is why his mastoid bone sticks out. Hard to swallow at first but his left ear is perfect and he will not and has not had any problems so far. He hears things and babbles and dances to music.

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While Connor was in the NICU Andrew & I both noticed that he would not turn his head to the right. We literally tried EVERYTHING. So after talking to his doctor she referred us to physical therapy. There it was confirmed that he had severe torticollis. In short torticollis is stiffening of the neck. We are unsure how he got this. I have researched and researched. I have read that it can be from how he was positioned in uterus, (I was 10 days late with Connor, so I think that was the case) it can be from a trauma labor (I would not progress past a 5 and had to have an emergency c-section, so that could be it too), I also have found that it could be caused to how he was pulled out of me during my c-section. Or it could be anything. We have been going to therapy since he was 2 months and have seen SO much progress. He has much better range of motion, but it is something that he will always have to deal with. I can really notice his tilt when he is sick or teething or is tired. It's just his comfy spot. But we have came a long way from where we were! 

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Since Connor has torticollis and preferred one side to lay on, he developed a flat spot. The official diagnosis for his head was called positional plagiocephaly so we made the decision to get him a helmet to help correct this. While he was in his helmet we still went to therapy for his neck. After he got his helmet off in January his head looked great! Until….

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Fast forward to the last few days in April. Andrew noticed his head was starting to look funny. I told him that because of his torticollis his head will look funny until he straightens out (thats what I have been told by multiple doctors and therapists.) He said OK and went on. Some great friends of ours mentioned to Andrew that his head looks funky and we need to do something about it. Andrew and I called the clinic that did his helmet. We had an appointment on Tuesday, April 29 and his orthotist confirmed that his head has grown 3mm to the left, and only 1mm to the right. So we discussed another helmet. Back to the great friends we have,they had an appointment at Children's Hospital in St. Louis on Wednesday, April 30, they showed their Nurse a picture of Connor and asked her opinion. She said that she would like to see us ASAP. So Andrew and I got an appointment for Connor the next day, May 1. 

That brings me to the journey we are about to embark on. When we arrived we got X-rays right away. Connor did great and was very well behaved! The nurse practitioner came in and told us that she would like us to get a CT scan because she thinks that one of Connors sutures in his skull had fused prematurely. At this point I am worried and scared and Connor is cranky and Andrew and I are worried that he is not going to do well with the CT scan and we would have to come back another day to get answers. Thankfully, Connor behaved during the CT scan. There were lots of tears for 30 seconds, but after it was over he was all smiles! 

The CT scan confirmed that Connor has Lambdoid Synostosis. Lambdoid Synostosis is very rare. Research suggests that is happens in less than every 1 in 300,000 live births. Lambdoid Synostosis is when the Lambdoid suture in the rear of the skull has closed (fused) prematurely. This causes the growth of the skull and brain to overcompensate for lost movement, and shift the back of the skull to one side. Resulting in a sweeping deformity of the overall head shape. The normal age for the closure of this suture is 26. This further explains why Connors head has grown 3mm in one direction. Remember the mastoid bone I mentioned earlier? One of the sure signs of Lambdoid Synostosis is an overgrowth of a mastoid bone. It was frustrating at first to find all this out, as if we were blown off knowing full well something else was wrong. His neurosurgeon reiterated the fact that due to Connors other issues (neck and ear) his health had set up physicians to missdiagnose the root cause of his head shape.

This is what Connor's Skull looks like.

This is the normal Skull of a newborn.

Since we know all of this now we are facing it head on. Connor will have surgery on June 5. I have confidence in Dr. Woo (the plastic surgeon) and Dr. Smyth (the neurologist). I know that St. Louis Children's Hospital is one of the best in the country. We are so fortunate enough to have caught this early. I can't thank Brittany and Mike enough for speaking up and talking to their team about us. Without that, who knows what would have happened down the road.

Thank you all for reading, we will need lots of prayers! I will continue to update this blog as things progress during the next month and through Connor's surgery.

I stumbled across a quote today that helped me…."Meet today's problems with today's strength. Don't start tackling tomorrow's problems until tomorrow. You do not have tomorrow's strength yet. You simply have enough for today."

Until next time!
Katie :)

Connor was so tired after his CT scan he fell asleep on Andrew!

Connor really enjoyed his own little chair and the game on the wall! 

Waiting to meet with Dr. Smyth!