Newly Diagnosised

[frymomma]

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!!

[EmmaLacey]

Wow! What a story! You have landed in the right spot for support honey! There are so many wonderful stories here. Feel free to read them as, as I'm sure you have. There is also a great thread somewhere about what to ask surgeons. Write down as many questions as you can as once you get into the appt. and the doctors start talking you may forget things you wanted to ask.

It is a very scary time, but you will get through it. Hopefully, you will feel good about the surgeons you meet. That always helps. I really trusted my Dr. from the first moment I met him. He is a wonderful man and we will always be grateful to him. My daughter Emma had surgery for sagittal almost a year ago and she is doing fantastic. She was pretty much back to normal (except for sleep issues) about a week after surgery. She had trouble sleeping as alot of babies do after surgery, but even that got better about a month after surgery.

Ask any questions you have......welcome to the group!!

[fumbling22]

Kudos to you for being persistant about getting a diagnosis for your son. I'm really sorry to hear that you have to go thru this, though. Craniokids is such an awesome resource!

My son has/had metopic cranio and had surgery 3 months ago. If your son needs surgery, he will totally amaze you with how quickly and well he recovers. I know my son was playing with his drainage tubes the next morning.

I also had about 3-4 high level ultrasounds and they didn't detect his cranio or his other birth defect (hypospadias). I can relate because I assumed after the ultrasounds that my son was perfect anatomically speaking.

It's great that you have found two different neurosurgeons to see. We also did that: Hopkins and Childrens in DC. Ultimately, we chose Childrens because we really felt a lot more comfortable with the NS. Honestly, we knew from the start that the Childrens NS was right for us... we just looked for a second opinion.

Curious, what hospitals are you checking out? Keep us posted about your upcoming appts.

Take care!

Becky

[Wyatt's Mom]

Welcome to craniokids. I'm glad that you were persistent and your son was diagnosed early. Early diagnosis is important because now you have more options available.
There are two types of surgery. One is called endoscopic and the other is the more traditional CVR (cranial vault reconstruction). I would look into both if I were you and make the decision that YOU are most comfortable with. There have been AMAZING results here with both surgeries.

Best of luck with your appointments. Please let us know how they go.

[Monica]

You poor thing. With your baby only 7 weeks, you're still riding the childbirth roller coaster, not to mention any hormone shifting that might be happening as your breastfeeding changes. Take heart that you are not alone with all these feelings. It can be very overwhelming. Everything went so well for us that I feel very comfortable with everything that happened. But every time I read a newbie's story, I get dumped right back in that pit that I was in when we first found out. Florence was metopic and had surgery at 4 months. The doctors told us that she had it all along, but it wasn't found on our ultrasound either. I've decided I was glad because it allowed me to enjoy my pregnancy and the first few months before someone told us her little pinhead wasn't natural. I know it feels like forever to you, but some kids go months or even years without a diagnosis, so for you to get people to work in only 7 weeks really is a tribute to your persistance.

I would go with the Doctor you feel the most comfortable with, regardless of where they are. Granted, Children's hospitals are more specialized, but the Dr is who you will want to trust the most. For Florence, the Cranio-facial specialist did the bulk of the work, so you might want to keep that in mind for whoever will have the most contact with you and your child.

Hang in there. Ask all the questions you can think of, don't panic and know that you are not alone.

[Mother of boys]

My son had saggital as well and had surgery at the beginning of October. If it wasn't for the scar, you wouldn't know he had major surgery recently. PM if you've got some questions.

[Josephsmommy]

Hi and Welcome!

Keep strong for your baby, you'll see how well he does!

Ask all the questions you'd like, I know I did? I'll be here to try to answer as many as I can!

[dannlark]

Welcome to CK, I'm so glad you found us!!!!

What a crazy rollercoaster this ride is, as you've been finding out. I'm so proud of you for pushing for answers regarding your baby. Mom's ALWAYS know best!!!! It grinds me that your Dr. said that it's only a genetic thing, etc... VERY uninformed about cranio, and that's seems to be the norm, unfortunately. It's NOT always a genetic thing, that's why more Dr.'s need be be on the look out for it. As you read stories on here (My Ian's included) you'll find that way to many of us here had to fight to get our children a proper diagnosis and treatment. Way to go Mommy for being sucessful!!!!

I know it's a totally terrifying time, we've all been there, but know that the kids are amazing with their recovery, and more so even when they do the endoscopic surgery which your baby is the perfect age for and you should look into. It needs to be done before 6 months of age (the earlier the better) and then in most cases its followed up with helmet therapy. There are a few moms here that have gone that route with amazing results. The CVR children also have AMAZING results and recover like it's nothing but a thing... Ian is 3 months post op and you'd never be able to tell he's had surgery unless you catch a glimps of his scar, which is very well hidden.

Anyway, I know you're a ball of emotions right now, especially so soon after birth, with breastfeeding, post partum stuff, etc.. And this thrown into the mix is REALLY hard to deal with. Get rest when you can. I hope the appointments go well and you find a Dr. that you connect to. That, in my opinion, is the most important thing. You'll know when you find the right one... Keep us posted and stay strong. We're here to get you through this, and you will. I promise...

[Abby'sMom]

but you've found a great place for support! My daughter was bi-coronal so I don't know a lot about sagittals but I can answer any questions you may have about the endoscopic option.

I know all about the emotional turmoil that this diagnosis can produce when it's dropped in your lap just after having a baby...the breastfeeding, the exhaustion, the crazy hormones and the awful worry. You are not alone but it sure can feel that way! Don't forget to take care of yourself while you are taking care of your beautiful baby. (((hugs)))

[Bean]

Welcome to craniokids - you are in the right spot.

While reading your post, I got very emotional - I know exactly what you are feeling - WHAT'S NEXT???? It is such an emotional rollercoaster, as others here will surely tell you.

The best advice I can give is: be here, ask questions, vent your feelings ... it helped me so much during Jake's surgery.

And yes, Jake was not gaining weight when he was born, so we had to supplement - once we were home, I pumped as much as I could, and breastfeed as much as I could, but we ended up supplementing at least one or two 2 oz bottles. I can't feel badly about it - he needed the nutrients.