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View Full Version : Laura - the story so far



babylaura
01-27-2008, 04:29 PM
Laura was our first child but second pregnancy as I had had an early miscarriage in late 2006. This made me a little nervous throughout the pregnancy, but everything seemed to go smoothly until the last minute.

I had noticed that I did not show much, even at the end, but the midwife told me that everyone carries differently. My scans showed that Laura was a long way in, nestled deep in my pelvis. We knew the placenta was anterior, but not that she was back to back until labour started.

When I was 37+3, I was having bad backache and went to see the midwife. She examined me and told me I was in early labour - I was amazed. Contractions started but during the night they stopped, and my blood pressure rocketed so I was transferred to the John Radcliffe Hospital.

Laura seemed to be doing fine but because of my blood pressure, they broke my waters and induced me on a drip. Laura was finally born at 37+4, at 4.45pm on Thursday 8 November 2007. She weighed 6lb 7.5oz and to us she looked just perfect.

A few days after the birth the midwife noticed Laura was jaundiced. As this persisted beyond two weeks, she was referred for tests. We were so worried during this time that we never thought to look at her head shape. At five weeks, the jaundice finally went. We had one week of not worrying about her, and then at her six week check, the doctor scared us half to death.

She said she didn't think Laura's head had grown since birth, and that her fontanelle seemed closed and she was concerned about skull deformity. She rushed us to A&E where the doctors re-measured her head and said it had actually grown the amount it should. However they were concerned about her skull shape, so they arranged an X-ray and gave us an appointment at the paediatric clinic.

Laura was 7 weeks old when we took her along to see the paediatrician. She seemed to be absolutely fine except for her head shape, the paediatrician said she was developmentally right where she should be, and thriving well. In fact, she said she was a poster child for breastfeeding! However, the X-ray suggested sagittal fusion, as did her head shape, and so she referred us to Dr Wall's team.

Our appointment for the clinic is a week on Tuesday (5th Feb) but I'm afraid I am worrying myself sick. I have pretty much convinced myself she has SCS: I think I can see minor webbing to her toes, her eyes seem a little wide apart, and I'm not sure they open fully. Her ears seem a little small. I think I can also see minor webbing to my toes and my eyes are a little wide apart.

I may be worrying myself unduly and I hope I am. Certainly my parents and husband think I am crazy. But we will have to wait and see.

I will update you on the 5th. Some pics below - any feedback on whether you think she exhibits syndromic signs would be much appreciated.

UPDATE - 23 Feb

I realised I never updated on Laura's appointment on this thread. Dr Wall confirmed sagittal cranio but he is confident it is non-syndromic. She has a CT scan booked for 10 March, and she is on the waiting list for a strip craniectomy sometime between April and July this year. We're very relieved, and she is coming on very well, especially her head control.

Pocket
01-27-2008, 05:16 PM
Hi laura's mum!
First things first - your gal is a honey. She is knock-out gorgeous!! Beautiful dark eyes. (reminds me a lot of my middle child). I am so sorry you are going through this with her - it is heartbreaking to think of anything wrong with our babes. The good news is that whatever happens you have a bunch of peope just a click away to help with any questions or concerns or sometimes just to give you a big cyberhug!!
From the photo I do see that laura's head has the oval shape indicative of saggital synostosis. My boy (nearly three) is metopic so I dont know much about saggital but there are plenty of ladies here who know all about it. I see from your post that you will be at the Radcliffe on Tuesday 5th Feb - funny coz i was due to be there with my boy for sugery the day before that. I could have met up with you!! Sadly our date was put off coz Patrick has been a bit unwell. We saw Mr Wall and his team the week before CHristmas and they were fantastic. I have heard great things about him. He is the president of the Craniofacial association this year which makes him a pretty special guy I think. .
Just wanted to say HI anyway.

Jenny
01-27-2008, 05:27 PM
i know its so hard not to worry, but you've got a good start on diagnosis. The good part is that the vast majority of kids do great. You'll find a lot of great support here. My nephew, Dillon, for whom this site was originally made for, is believed to have SCS. I think I have it, and my daughter has it, as we are both bi-coronal. But unfortunately, the genetics testing is not all that accurrate. Syndrome related or not, your daughter's condition is not going to have any large effect on her. Usually, it comes down to being cosmetic, especially with only one suture closure. Although there can be more sever cases with intercranial pressure and such.
Your daughter looks great, its hard to say if she's syndromic.. Chances are she is not, since it appears to only be one suture closure. Generally as a rule, single suture closures are not syndromic. What will determine more is a CT scan, which you should be referred to, and if not, ask for one. This will give a more accurate determination of which sutures are closed, and also checks if there is any pressure. They can tell if there is a normal growth rate, and check any bone thinning. I know it is a lot of information, but you'll get through it day by day. Your little angel will be just fine..

xl1200c
01-27-2008, 09:50 PM
Welcome to the boards. You have a beautiful baby girl. From the first picture, the top view, I would say you definately have reason to be concerned on the shape, (but I'm not knowledgable about syndromes). You are doing the correct things by checking into all this, please let us know how you make out.

three.little.boys
01-27-2008, 10:05 PM
welcome to this wonderful site...you have found a safe place to land here! I also think your sweet and beautiful daughter is possibly sagital. My son is metopic, but I have looked at so many pics now that it is hard not to know! HA HA!

Good luck on the upcoming appointment. We will be thinking of all of you. You have a beautiful baby girl...try not to miss out on these special first months due to being worried. These times fly by fast, and she will be OK no matter what the diagnosis is!

Sincerely,
Sadie