Scared and Waiting

[Mommyto2boys]

:signs116:Hello Everybody,

I am new I have been reading through this forum all day and decided to join. I am currently 19 weeks pregnant with my second child and have an 18 month old Son named Aiden. Baby Boy#2 has been diagnosed with SB in the L4 region. We do not know yet weither the skin is open or closed, I had an amnio on thursday after my second ultrasound at high risk OB. Also was told my little guy has 1 vein and 1 artery in his umbillical cord when normally there are 2 arteries and 1 vein, this could be a marker for Down's Syndrome thus also performing the Amnio. The genetic counselor mentioned the growth of babys skull to look like a lemon because of the pulling of the brain by the spinal cord as it grows. My question is will this stay in the shape of a lemon or will the cranial bones go back to normal? Also babies ventricles are not symetrical and I believe this is a marker for Arnold-Ciari (sp?) Malformation?? What does this all mean, has anyone had this similar diagnoses that can give me a little explaination and hope for my babies future, I am completely terrified and just want my baby to be okay..

Thanks so much

[Mommyto2boys]

I guess I should say I will also know preliminary results to Amnio by Tuesday this coming week.

[misty]

Hi! Welcome to the forum! I'm Misty, a 27 year old adult with open SB, L5, Chiari malformation, hydrocephalus, lemon head...you name it, I have it. First of all, any fruit salad references can be ignored. They are ridiculous names for medical diagnoses that mean virtually nothing for you and your tiny one! Your baby's head is not shaped like a lemon. Lemon head is a marker for hydrocephalus. If necessary, when the baby is born, a surgeon can insert a shunt to drain the excess fluid. Your baby won't look like a fruit! I promise! Hang around here and we'll get you through this! Hugs!

[misty]

I'm sorry. I made a mistake. Lemon head is actually a marker for chiari malformation. In most cases, chiari is asymptomatic. The only symptoms I've had are a strong gag reflex and trouble swallowing pills. Other advice: don't google. Google is scary and contains a lot of false information!

[ronandtosh]

Regarding your concerns, I must tell you of our experience.
A little over a year ago, my wife, 2 kids, and I chose to adopt a baby boy with SB (lesion located L4-L5). We named him Landen! I must say up front that I simply can’t put into words the priceless blessing he has been for our family. We fight over him quite regularly! =)
Needless to say, we didn’t know anything about SB at the time Landen blessed our family. We dove head-first into finding any and all information on SB, Hydrocephalus, Hip Dysplasia, etc. we could because we IMMEDIATELY made the decision to enable him 130%. We arrived at the hospital shortly after he was born. Like many of you, we had hundreds of questions; to which many were answered by medical professionals with a “We don’t have a crystal ball.” While it was frustrating, we certainly understood!
There are many expectant mothers out there whose fetuses have been diagnosed with SB. Although you will be “urged” by some medical professionals to consider terminating your pregnancy, I must say that I think it would be the BIGGEST mistake. I know many doctors say things that scare you regarding you and your baby’s future. The pessimism of these medical professionals is extremely bothersome. I know many of you have been urged to speak and meet with your neurosurgeon; stating that THEY are the ones who better understand and have better attitudes. I must say that this is true in our case. If you have little faith or confidence in your neurosurgeon, FIND ANOTHER ONE! On a personal note, we drive an hour further to meet with the neurosurgeon we REALLY like as opposed to ones that are closer. Even with the increased prices of gas, THIS WILL NOT CHANGE. You can’t put a price on peace of mind!
There will be many difficulties regarding complications surrounding SB and other diagnoses; NONE OF WHICH ARE TOO HARD TO HANDLE! Again, we have thrown ourselves in head-first and quite honestly, are looking to adopt again; preferably a child with SB!
In conclusion, having a baby with SB is a special, precious, unique experience! For those of you who are skeptical, please understand that this is a beautiful journey filled with unconditional joy and happiness. You have enormous blessings to look forward to.
Check out our blog at www.littlelanden.blogspot.com. Tell us what you think!

[Dodger67]

Welcome! :happy065:

[jveprek]

Welcome!!! Madi's right about an L2-L3 level. She also has a Chiari II malformation, though it is not caused problems for her. She did have the "banana" and "lemon" signs and all that good stuff. Her skull/head look totally normal and actually are shaped quite well and rounded now. It's not a permanent thing. She is a very bright little girl who lights up a room as soon as she enters. She is smart and determined and finds ways to do things. She walks with HKFOs and a walker. She also has a wheelchair, but doesn't really use that much yet, as she's only 2, and we still carry her a lot, or she crawls, or she walks. She has a shunt and hydro as well. Please feel free to ask any questions.

[jveprek]

Oh, and being scared is TOTALLY NORMAL, but things WILL be ok, our kiddos really are amazing! If I knew then what I knew now, I wouldn't have shed tears and lost sleep, because things are ok, and my little gal is amazing, shunt, HKFOs, and all! :happy065:

[Jill]

Oh, and being scared is TOTALLY NORMAL, but things WILL be ok, our kiddos really are amazing! If I knew then what I knew now, I wouldn't have shed tears and lost sleep, because things are ok, and my little gal is amazing, shunt, HKFOs, and all! :happy065:

Yeah, what she said ^^
All I wanted when I was in your shoes was a crystal ball to see that everything was going to be okay. If I just could've seen my Kingsley I would've saved myself four months of heartache and tears. :(

Welcome! Congratulations on your baby boy! One thing you can be sure of is that this guys birth is going to be every bit as exciting and wonderful and overwhelmingly amazing as your first child's. He'll blend into your family so seamlessly you'll wonder what in the world you were worried about.

My third child, Kingsley, has SB, Chiari Malformation 2, hydrocephalus and a couple side labels. He had the banana and the lemon, he has a shunt. His head is an odd shape but I think it's related to compications from Chiari. Only I can tell, most people think I'm crazy when I mention it. Anyway, he has all these scary things on paper but he is a sweet, awesome, happy little 16 month old. We adore him!

[janjanwhit]

Fergus had lemon head and banana signs. When he was born his head was completely normal shaped. He had a shunt put in for his hydro and 2 years later we have had no problems. like most people he has had no symtoms from the charai. all the things you have described are not additional bad things- they are just sb markers that almost everyone with sb has.

[Mommyto2boys]

Got results of the amnio yesterday and no down's syndrome was found and there is an opening in the spine which I believe is pretty small considering the high risk perinatoligist had hard time seeing. Now on to the final amnio results next week and appt with neurosurgeon. Thanks for all the very encouraging words, I am less scared the more education I have read about all of this. My baby was made perfect for our family and this we will get through.

[Jill]

That's good news! Good luck with the amnio and appointment next week.

[Barb]

Good luck to you and congrats on your baby. We will be here for you every step of the way. :)

[jveprek]

Great news!!!!

[n3rdchik]

Just wanted to comment on the SUA (single umbilical artery) - Sagan was diagnosed with this. Please don't let it scare you too much. The Perinatal specialist said this can be a "soft marker" for other issues, but 99.9% of the time, the SUA is a non-issue. You will likely have additional checks for growth.

And surprisingly - they caught the SUA, but not the lipomyelomeningocele