MONTANNA

My daughter Montanna was born on 13th October 2002, 3 days before her due date. Montanna weighed 6lbs 10oz, 49cm long, and had a head circ of 32.5cm.
My pregnancy was perfect, no morning sickness, no complications. Unlike my first pregnancy, I was sick right up until the day delivered my first daughter Brittany. The labor was much the same, 45 minutes after waters were broken she was born.
 

When Montanna was born she had a bulge on her right cheekbone, and her right eye seemed to be opened a lot wider than the left, we were told it was a birthing head and it was the way she was laying in utero and that it would mold back into shape in it own good time. Montanna also carried her neck to the left and the midwife organized for a physio to look at her. The physio told us not to worry as it appeared to be worse that it actually was and to encourage her to look to the opposite side and to place her to sleep on the other side as well.

At our six week check up the bulge was very much still there, and her eye had not changed either.  When I again questioned this, I was told that I was paranoid and my baby was fine. The doctor also told me to look at myself, as one of my breasts was bigger than the other, saying that no one is perfect.
 

When Montanna was 7.5 months I was really concerned as her neck was still tilted to the left and showed no signs of improvement. Montanna also screamed the whole time we were in the car, even on 5 min drives. So back to the doctors we went, he looked her over and said she was fine it was a separation thing. I was not satisfied with this as we had also thought of that and moved the car seat so she had a better view of where I was, but still she screamed unless I was nursing her. The doctor then told us to sedate her, we tried that and still she screamed in the car. After a week of this I had had enough, so I took Montanna to see a Chiropractor. On arriving, the chiropractor was astonished, because although Montanna's neck could turn her head both ways, she had trouble getting her head all the way to the left, and had actually been locked into a position. This in turn was causing shocking pains down her neck, anytime she was in the car seat. So for 7.5 months she was in pain, that explained the bad sleeping patterns and why Montanna was only happy when I was holding her. The chiro asked us to have skull x-rays so she knew what she was working with.
 

I then took Montanna to the doctor's to inform him that we took her to the chiro, he was not very impressed. When we walked in, he said that he was not happy with Montanna's neck as she was crawling at six months and it should have been showing some improvement by now. He wanted x-rays of her spine and ultrasounds of her neck done. We arranged to have all these done the same day as the skull x-rays.
 

When our doctor got the reports back he called and asked to see Montanna. Upon arriving, he told us that the x-rays showed that she has a mild torticollis, and my child had to see a pediatrician, and a neurosurgeon, as she may developed brain damage. He didn't explain a lot he just said that one of her bones in her skull had closed prematurely.
 

We were booked in to the pediatrician 2 weeks later. At this appointment he told us that Montanna had a fused suture in her skull and that would explain the distortion of her skull, so without the chiropractors x-rays we still would have no idea on Montanna's condition. The pediatrician told us that surgery was a option only if us, the parents, wanted it done, but it would be for cosmetic reasons only, as Montanna showed no indication of any kind of brain damage as she had reached all of her milestones well before her time. He also referred us to a neurosurgeon for a second opinion, thank god he did.
 

It took another month to get in to see this Neurosurgeon, so off we went for the 5 hour drive to Sydney. The neurosurgeon took just one look at Montanna and said she had Right Coronal Synostosis, harliquinn eye deformities, and torticollis, and surgery was a must to correct it. This surgeon did not follow through with this type of surgery but he would send us to someone who did.
 

We were sent to a professor Poole, who has a waiting list of 3 months, thankfully they got us an appointment that very same Tuesday. So off we went again to another surgeon. Upon arriving there he told us pretty much the same as the Neurosurgeon, but had explained a hell of a lot more to us. This surgeon does not perform this type of operation until the child is 12 to 15 months old as he has better results with this age group. He told us what was involved with the surgery, which was very upsetting knowing that our child had to go through something so complicated. He also said if Montanna's eye didn't fix after surgery, which he is pretty sure it will, it will need surgery down the tracks as well.  We also asked about the torticollis as well, and he told us that providing we get physio or chiropractic work done, it usually fixes by the time the child is 18 months old,  if not surgery will be the option to correct it.

We were concerned about the risks involved, the pain after, and lots of other little things that this surgeon was happy to answer for us. He also asked our local doctor to organize a ct scan, which was done a week later. On the bottom of the report it stated that the ct scan doctor suspects that the distortion of the skull was more so Plagiocephaly rather than the fused suture. When I questioned the doctor on this I was told that they had told us what they already knew.
My main question was why wasn't this picked up, as I was concerned all along and they just brushed me aside as if I was stupid! Mother's instincts are correct 99.9%  of the time, so if a mother is concerned, and the doctors don't have answers, then they should refer to some one who does have the answers.
 

We are still waiting for a surgery date, we received a call from the surgeon a week ago and were told it would be performed before the end of the year and to expect a letter in the next few months with the date. Montanna is now 10 months old and just started to walk. I'm still very upset at  the fact that it took 9.5 months to get a diagnosis of Montanna's condition. Especially when I, as the mother, knew there may have been some thing wrong with my Childs head from the beginning! I have since changed our GP.

If anyone has any questions or comments please don't hesitate to email me on kaceycraig@bigpond.com
 

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©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001