I am a mother of 3. My newest addition who is 7 weeks old was just diagnosised with saggital stenosis. I was greatful to find your page last night. We where given a definite diagnosis the day before Thanksgiving after 7 weeks of saying something was wrong, and 4 doctors later.
I am worrying myself sick now that all the company is gone and things have slowed down I am beging to think about things agian. I try to keep it out of my head but it just does not work. We meet with the first of two surgeons recommended to our family Thur and the second on Mon. I am so worried about how I am going to handle the appointments. I was set to start my internship for school in Jan and things are so turned upside down I do not know where to start.
I am very glad that my son is healthy otherwise and I realize that things could be a lot worse but how I am going to hand him off to doctors to operate on his beautiful little head after weeks of asking why his head had a spine and why I could not feel any soft spots. I first thought something was wrong after the constant utlrasounds where his head measured large when my other two had small heads, then came labor and I could not get him out after two very quick labors previously. I asked continuosly after his birth about his head and was told over and over it just had not reshaped after being stuck. Luckily and unluckily for us he spiked a fever 2 weekends ago and the ER Dr asked if he had seen a neurosurgeon. I thought he was crazy as did the pediatrician who said the condition was so very rare and usually associated with genetic disorders and he was so clearly not showing any signs of developmental problems. How she scared me to death when she said all this that there was some underlying condition we had yet to figure out. He has also had trouble gaining weight, has anyone else had this problem? I unfortunatley have slacked on my breastfeeding and am having to supplement more becauase of the emotional roller coaster I have been on.
I am wondering if anyone had surgery at a general hospital verses a childrens hospital. One of the surgeons is out of a general hospital the other is at The local Childres hospital and operates with a plastic surgeon as well . I have not meet either yet but I feel that using a childrens hospital and a plastic surgeon as well is the best idea yet. I am having a hard time believing that I can trust anyone with his life after so many doctors dismissing my gut instincts. I even saw pernatalintologist while I was prego twice and they performed ultrasounds on me as well and I feel as though this is something I could have been prepared for since he was born with his spine.
I know we will get through tthis but I am worried out of my mind as my older children will be here without me and we have no family to rely on for help.
This seems to be the only form of support that I can find right now with anyone who understands what I maybe feeling from time to time.Once agian thank you for sharing your stories. Please lets keep opening up the light to this condition and educate the world!!