Hi! Wanted to introduce myself and daughter

Megan - posted on 11/09/2009 ( 2 moms have responded )

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Hi everyone! I just wanted to post a little about myself and my daughter.

My daughter Aryah Blaine was born at 28 weeks (she is a non-identical twin and I went in to labor at 22 weeks and slowly got worse and worse until 28 weeks, due to an incompetent cervix). She was in the NICU for 71 days and it was actually a relativly quiet stay. She was 1256 grams at birth and 13 inches. While she was in the NICU my husband and I noticed her head was beginning to get flat on the sides. The nursed kept saying it was just because she was laying on one side or the other too long, of course her sister had no issues so we could compare and tell them no something is wrong. But nothing came of that. One week after discharge at her first dr appointment I brought it up and he assured me nothing was wrong, just from laying on it. I still had my reserves about it but after 3 people said no she is fine. I left it at that. 3 months later at her 6 month (3 month corrected age) we saw a new doctor in our office. She was fresh out of the military and as soon as she saw my daughter knew something wasn't right. She ordered a CT to confirm craniosynostosis. Two days later she had her CT, the first surgeon to look at her CT's confirmed it was craniosynostosis but told me she wouldn't need surgery for another 6-9 months. On her CT there are marked areas of dark space where there should be skull bone. I asked about this and he said "the CT must not have picked it up in those spots". I didn't like this answer and took her to Childrens Hospital in Seattle with CT in hand. As soon as they saw the CT they ordered another on their machines. Turns out those spots were actually where her brain was pushing so hard that her skull had thinned out to about the thickness of a sheet of paper. They wanted to do surgery ASAP hoping that it wasn't too late and they could avoid any further brain damage. She was seen in mid September of 2007, and three weeks later in the OR for correction surgery. It would have been earlier but they were worried about her blood counts and that she might have a clotting disorder (but she didn't!). Surgery went great! She is now a happy healthy 2 and a half year old. We do have some issues with gross motor and fine motor skills, but it is hard to say if this is due to her being a preemie or the surgery/craniosynostosis damage before surgery. We are working with PT once a week and also will be going back for another CT for a few spots that are still slightly misshapen. Overall though things went really well. My husband is in the military and was deployed for the diagnosis but thankfully they got him home in time for the surgery. Thanks for reading my little story! If you have any questions or advice please feel free, we have been through a lot but learn a ton during the time. I am currently attending college working towards my nursing degree, which is what I realized I wanted to do after watching my girls in the NICU for as long as they were. I hope that some day I can be one of those "favorite" nurses that we had for another family!

Also it was just her saggital and we didn't require helmets. I also have a TON of pictures before and after if anyone would like to see so they can see what they can expect. She had the ear to ear zipper cut, her plastic surgeon was amazing, and you can hardly even see her scar! We are also part of the genetic testing and craniosynostosis study at Childrens Hospital Seattle, Washington State Hospital and UC Davis School of Medicine. I hope that someday we can find out what causes this and that we can prevent it in the future or at least spot the markers for it earlier!

To other moms that are going through this, it is okay and things WILL work out!

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Jessica - posted on 07/25/2010

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Thank you for your story. I too have non-identical twins. Girls. They are 5 months now and we get a CT scan on Aug. 4th to confirm if they have craniosynostosis. Was it the traditional or endoscopic surgery? Do you have any advise to offer in communicating with doctors, etc. that may be helpful throughout this process?

Ann - posted on 05/18/2010

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Hi - I have a 26 identical twin who has craniosynostosis. She was on a variety of breathing devices including CPAP. When she was around 31 weeks she became ill and was on CPAP at the time. This was also during a week of growth. after that week we noticed her frontal lobe started looking big, and different than her sisters. The neurosurgeon was consulted. It was suspected that she could have Craniosynistosis but could just be positioning as a preemie. It was not til after she was discharged and my concerns and the neonatalogist that she had an x-ray that confirmed it. She had surgery last year to correct it and she was looking great. But since we had a few issues with her prior to surgery the neurosurgeon wanted to see her one last time about a year post op. Well as you know appointments don't always fall when the should. Now they have told us that she is in the 3% that resynost. Currently we are waiting a surgery date. I am hoping for the same surgeon. She is only with Dartmouth til Aug then she goes to Boston.

Well my daugher will be 2 in July so it means a helmut maybe needed.

She too will have genetic testing. Just so overwhelming to understand.

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