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.

[SamanthaLei]

I caught my son's sagittal when he was 6 weeks after being dismissed by my pediatrician. I know how you are feeling. As you start to make these important decisions you'll start to feel better about getting ready for the surgery. It's not easy but I hope you can find some peace through all of our stories.
I definitely recommend using a plastic surgeon AND a neurosurgeon. That's what we did and I've never regretted. Feel free to post and and ALL your concerns so we can help.

[frymomma]

can anyone tell me how long they were in Dallas and where they stayed?

We are considering getting an opinion from Dr. Fearon

[Claire'sMom]

We live in Dallas, well North Dallas, so we did not have to worry about staying somewhere. But, if you were to come to Dallas for surgery, you could plan on a couple of days of pre-op appointments, then the surgery. After the surgery is done you are only in the hospital for 3-4 days. Dr. Fearon usually dismisses his patients on the 3rd day, we used Dr. Genecov, also at Medical City, and we were dismissed on the 4th day. You would normally stay a day after you were dismissed from the hospital and then head home. So all in all, roughly 5 - 7 days. I am sure that some of the moms will chime in as to where they stayed when they were here. I know that some like the Hyatt Place. There are some great surgeons at Medical City and you would be in great hands there. If you decide to come to Dallas, let me know if you need anything. I will be happy to help out.

[Amy K]

Welcome! My son Camden had a Posterior CVR performed by Dr. Fearon for his sagittal synostosis. Fearon's awesome! My boy is almost one year post op!!

[Grace'smommy]

Hi, I read your story and it sounds very much like my experience.Grace was born with a ridge on the back of her head that felt very spine like.She was born via c section due to prolonged labour so I assumed that was normal.Had her to the doctor several times for feeding problems and my doctor told me I had better take her to a ped as she had too many problems she could not deal with.Told me to stop breastfeeding and start her on formula as she was allergic to breastmilk.By the time I saw my ped she had wished we had gone to see her sooner as we should have never stopped Grace from breastfeeding.I felt like a new mom who was becoming a pain to my own doctor.I took her to the ped and she took one look at her and said your daughter has an odd shaped head and we are going to send her for a ct scan to rule out craniosynostosis.I live in Virginia Beach and my daughter was diagnosed at age 6 months{a few weeks ago} with sagittal stenosis.We were supposed to see a NS and plastics at CHKD but our insurance company refused as my husband is retired navy so we were sent to Portsmouth Naval hospital.I was so upset that we were refused the childrens hospital.We saw the NS yesterday and he was excellent.The hospital deals with peds , has a PICU.He told us that the surgery was for cosmetic reasons that if not done Grace would have facial anomalies , but there is no danger of intercranial pressure or brain damage with sagittal stenosis.I am told that we could contact another surgeon and ask them to appeal our insurance company but she is going on 7 months old and I feel Portsmouth will take great care of her.I can relate to everything you are going through.Keep your chin up and think positive.I don't know what I might be able to do to help you . I know we are in the same state at least.The doctors at Childrens Hospital of the Kings Daughter in Norfolk is Dr Richard Rosenblum he is plastics and neuro is Dr Joseph Dilustro.The craniofacial co ordinator is Karen and her number is 757-668-7031.Maybe she can answer some of your questions or give you some advice.

[Grace'smommy]

If you go to CHKD WEBSITE WWW.CHKD.COM (http://www.CHKD.COM) YOU CAN LOOK UP THE CRANIOFACIAL TEAM THEY HAVE AN EXCELLENT REP so I am told .

[melsch]

Welcome! I too give you kudos for being such a great advocate for your son. Unfortunately, too many parents have had to push too hard for a dx. My son also had surgery at DC Childrens. Our experience was wonderful. If you would like more information on which NS we used at Children's please PM me. I can't remember where Chester is in VA to know if Children's is even and option...so much for my geography knowledge. So glad you found us!

[Sally]

Wow, so sorry to hear your worries. I completely know how you feel. My son was born with some medical concerns and I was just sick for weeks about all the things he's going to have to go through. I still have days that all I want to do is cry. I too am very thankful that my son is healthy and with a few surgeries will be okay but it's so hard when it's our precious little ones going through these things. Just keep in mind the amazing things that can be done to fix our babies. There are so many positive stories on here so keep reading. Best of luck!

[mattricia]

[quote=Sally;90758]I was just sick for weeks about all the things he's going to have to go through. I still have days that all I want to do is cry. I too am very thankful that my son is healthy and with a few surgeries will be okay but it's so hard when it's our precious little ones going through these things.[quote]

Welcome you to CK. We've all been in your shoes. I remember so well, sitting, unable to move, as i held Jack and worrying and crying as we anticipated his surgery.

We're here for you. Vent all you need to. It really helps.

[KyrasMommy083008]

Wow, you have no idea how similar our stories are. I'll start from the beginning so we can kind of compare notes. At my 8 month mark, I started having problems with my blood pressure. I figured it was due to a high stressed level job (I work with developmentally disabled adults.) As the last couple months progressed I actually had to start taking a blood pressure medication to control my blood pressure. My OB's mother passed away, and I was scheduled to have my final visit. Thankfully one of her good friends (who was also an OB) decided to see me just to touch base and see where my pressures were at. When I arrived at his office he checked my blood pressure and it was 178/108. I sat in his office for almost two hours. They then decided to do a blood count and a 24 hour urine. The next day I took my urine in and I had only produced 700 units, and you're supposed to produce around 1500 units. They then told me to go home and rest, and they would make a decision when my blood count arrived. Around 5:30 that evening, I got a phone call telling me to go to the hospital. They were going to induce me, because things were getting very dangerous. They put the cervidil in that night and the next morning started potocin. I had refused an epidyral (SP?), partially because I was afraid of it, and partially because I could endure the pain. It hadn't become too much to bear yet. As the evening went on my pressures got into the 278/150's and they told me that if I didn't do something I was going to end up having a seizure that could potentially be fatal. So, my family talked me into getting one right after they had ruptured my membranes. They put they monitor on her head and immediately noticed decelerations with every contraction. My OB just happened to be oncall, so he was soon to be arriving from the other hospital. When he arrived I had just recieved my epidyral. As soon as it kicked in, my heart rate began to drop and my pressures did the same. Before long they began to give me oxygen and turn me from side to side to see if it would help while waiting on the oncall to return. They never once told me I was going in for an emergancy c-section. The next thing I remember is them saying my heart rate had dropped to 40 and my BP was 60/30. Then I heard my baby cry. I thought it was the baby next door when infact it was mine. From then until being moved from gourney to gourney I don' remember anything. The nurses told me to hug myself but I was blocked too high and had no control over anything but my head. They then rolled me on my side and proceeded to drop me on the floor... thank God I didn't feel it. Kyra checked out okay, when they did the evaluation. I was concerned about her head shape because the doctors told me she was never even engaged in the birth canal, therefore my water should have never been broken. I said something to the doctors then, but they ignored my concerns. When we were released from the hospital, I was still struggling with breastfeeding. I could get her to latch on, but in less than 5 minutes she would be asleep. I then began to grow very concerned, but I was persistently told not to worry everything would be okay. On her one month check up, She had lost 17 ounces. I told the ped. I wanted something done, and I wanted it done now. I wanted to know what was wrong with her head and I wanted to know why she had lost so much weight in a two week period. Again, I was told not to worry. I made sure something got done. She was admitted to the hospital that afternoon. They confirmed she had a UTI which was causing her to use all her calories to fight that infection, instead of to grow. Which in turn caused my milk to dry up because she had no energy to eat. So she was literally starving to death. After a 5 day hospital stay, Kyra had been diagnosed with Plagiocephaly... which is the unilateral coronal synostosis-- her left side. I have been beside myself trying to find answers. I've become consumed with finding out what is going on with my baby girl. Her surgery is scheduled for January 26th, 2009. I am petrified. I'm sorry if I have written too much. I was just very surprised at how similar our stories were, and I wanted to give you some hope that everything will be okay, and that there are others out there going through the same way, and it would make it easier to stick together! I'll be praying for your child as it undergoes the surgery. I hope all goes well. Please keep me posted on how your child is doing!!!

[Astrid´s mom]

My 4 months old daughter was diagnosed with Right Coronal Synostosis on december 19, 2008... she is going through surgery in april or may... I just want you to know, that you´re not alone... I am really worried and terrified like you... I am very glad, that I found CK... everyone is very supportive and their stories really helps me a lot getting through this... I just wish, that my little girl already was over the surgery and we were back to normal... the waiting time is really hard and it makes me sad... I don´t want to see my little girl in pain... I can really relate to all your feelings about this... We must stay strong for our kids even though it´s a difficult time for us... I wish you luck with your babyboy:)

[fitmomof2ae]

Wow, what a story. It's hard enough getting used to the new family dynamics and recovering from childbirth...then this diagnosis!!!

It sounds like you are doing a great job researching the diagnosis, finding support and researching hospitals/surgeons.

I'm going through the "searching for answers" phase right now too! I wish my Dr. would have diagnosed my son earlier. I would have liked to have an option of which surgery I wanted. Unfortunately, he was just diagnosed at 9 months. The less invasive surgery is only available until 6 months. There doesn't seem to be any harm done at this point, but it's still better to be diagnosed asap.

My son has sagittal too and I believe he has had it since birth or before...I know sometimes the fusion can occur later, but I just posted pics of him at birth and I think he had it then...now that I know what it is and what to look for...(You can take a look and see what you think.) Anyway, I'll keep you posted on what I learn as I go through this journey and surgery.

As for the ultrasound pics, I've looked through mine several times now and done research. They say it is very difficult to diagnose via an ultrasound, but I'm going to take my pics with me and ask the NS what he thinks. The us tech I used had 25 years of experience, so if it was there I think she should have noticed. I was high risk and had many us's done toward the end of my pg.

Good luck on your journey! Hang in there...We're here for you!!!