Tuesday, March 16, 2010

The beginning

On Aug 27, 2009 we welcomed our 2nd and 3rd sons into the world, Landon and Grayson! My pregnancy and delivery was a text book case. I had no complications at all, and the boys had to be "kicked out" at 38 weeks weighing in at 6.9 and 6.7. They were born happy and healthy!


While in the hospital I noticed the back of Landon's head was shaped a little different. I remember asking one of the rotating pediatricians about it, and they said that it was from his positioning in utero. I also noticed that one of his ears were slightly farther back and lower than the other and that he had a very defined ridge on the top left side of his head. I kept this to myself because I felt shame for noticing these minor flaws on my perfect, beautiful little boy.

We left the hospital after 5 days and life as a family of 5 began. At the boys one month checkup we were not able to see our normal pediatrician, so we saw another doctor at the practice. We had a list of questions as most new parents do. One this list was our concern about Landon's head shape. When looking at Landon from the front, it was slowly growing more noticeable and when you turned him around, you could see that the top right side of his head was growing "up" and the back left side of his head was flat. This doctor also dismissed our concerns and said he must sleep in that position a lot. I remember feeling a little defensive because I knew that his head shape was not as a result from being left on his back for long periods of time. We moved on to the other questions on our list.

The next month passed and his head shape was no longer a major concern for us. In hindsight, I think we became used to the shape and did not notice that it was changing, because he head was growing. At their 2 month checkup we were able to see our regular doctor. Once again we had a list of questions, this time, his head shape was not on that list. When the doctor came in he noticed Landon’s head in the first few seconds and said he wanted to refer us to the neurosurgeon at Duke University Hospital. He gave me two terms; Craniosynostosis and Plagiocephaly. He briefly described each. He said that Craniosynostosis is when one or more of the sutures of a baby’s skull fuse prematurely. He said he was hoping it was the later, which is basically positioning molding that would fix itself in the first years of life. Either way, this is probably the result of Landon being head down in the womb for several weeks due to the small space he shared with his twin brother. We were scheduled for our appointment at Duke 4 long weeks later.

Our appointment day came and our nerves were at an all time high. Somehow the past weeks had flow by and we did not let ourselves think about the “what if’s”. I can honestly say that I did not once Google “Craniosynostosis”. When we got to Duke I was overcome with emotion. We were faced with a huge reality check when we saw dozens of very sick children at the Hospital. I felt like I needed to just hug by boys and realized how much we have to be thankful for.

When we were finally called back, we first saw a nurse who took all his stats, weight, length, and temp. We only waited a few minutes and the Dr came in. He looked at Landon for about 10 seconds, touched his head once, and said that his head shape is from positioning and labeled it “Plagiocephaly”. Great news! He told us we just needed to keep repositioning him and try to keep him off that flat side. Easier said than done with a 3 month old. He gave us some good ideas, and said goodbye. He said there was no need to a follow up. We could breath, this was behind us.

Little did we know…

At the weeks past, my mom, asked about Landon’s head on more than one occasion. She was concerned. We also received expressed concern from our older son, Aidan’s, therapists. We felt very confident in what we were told by the neurosurgeon at Duke, and would explain to everyone that it would correct itself over time. We did not see what they all saw though, it was getting worse. Since we see him every day, it is hard for us to notice the change. We are also so used to it now, that we don’t look at him and see that he head shape is not normal.

Before we knew it the boys were 6 months old. It was time once again to visit the pediatrician. This time, my list included the growing concern about Landon’s head. When our doctor walked in, I did not even have time to get to my list. His first words to me were “We need to get a second opinion on his head”. He ordered a CT scan the next morning. Landon did great during the scan. He did not need to be sedated, and laid perfectly still during the seconds long process. I left with 2 copied of cd’s containing his images, and with the knowledge that the Radiology Report would be faxed to both our pediatrician and the Dr at Duke. About an hour about we left the CT scan, I received a call from our pediatrician. He had already gotten the results and already called Duke. He explained that the Radiology Report confirmed that Landon had Craniosynostosis. His left Lambdoid was fused. He needed surgery.

Lambdoid Synostosis is the rarest form of Craniosynostosis and occurs in every 1 in 100,000 births.

This brings us to present day. We currently have a follow up appointment scheduled at Duke and a 2nd opinion scheduled at the Mayo Clinic in Rochester, MN.

1 comment:

Jackie said...

{{{hugs}}} My thoughts are with you. I hope the surgery goes well!