Experience with fetal spinal cysts? UPDATED 3/3

kittenslove · February 2014

Hello all,

Got a call today from my OB, my a/s yesterday showed multiple cysts at the base of babys spine. Not sure what it means, will find out more on Monday with the perinatal specialist. OB made is seem pretty serious without giving specifics, only that it could be nothing, could be a spinal defect (including spina bifida), could mean other serious health complications. Dr. google isn't giving me any good info, even after trying lots of keyword combos. Wondering if anyone on here has experience with this diagnosis, and if so, what was the cause and how it was treated?

Thanks.

edit: got my "y"s and "ies"s mixed up

UPDATE 2/24 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Thank you ladies for your thoughts and prayers, it is nice having this board for support.

The specialist diagnosed Sacroccygeal Teratoma (SCT). Basically, the baby has a tumor the size of a baseball hanging off the tailbone. The spine is not involved, although strain on the heart is now a worry. At this time, we do not know if the tumor is growing inward/other organs are involved, but are going in for an MRI tomorrow morning. I will be continuing my care at the Childrens Hospital of Philadelphia, where they will decide if fetal surgery is the best option, or a planned early c-section is the best course. I will keep you updated as I can.

Lots of love to you all,

Danielle

UPDATE 3/3~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hello ladies,

Sorry I have not been on to write, this has been an emotionally draining week. The baby does have a confirmed SCT type 2, mostly cystic. The doctors are confident we will be able to remove this after birth. I will have a planned csection no later then 37 weeks, the baby will have surgery about two days after birth (depending on when he is born). We will deliver at CHOP and will be continuing my care there with a MFM. Lots of monitoring with weekly ultrasounds going forward. These tumors are known for growing out of control, and that is our main concern now. Please keep us in your thoughts, we need good luck throughout the next few weeks.

Mztwilson · February 2014

No experience but sending lots of thoughts and prayers it's nothing serious.

RedMar · February 2014

Sending you thoughts and prayers everything is ok...

fferreiralynn · February 2014

T&P

Dharmatron · February 2014

No experience, but thoughts and prayers for you and your family.

TheMrs820 · February 2014

I am sorry i don't have any useful information for you. I am sending my thoughts and prayers.

LilyGracesMommy · February 2014

No experience, but keeping you and baby in my thoughts and prayers

maggiexxx · February 2014

T&P for you and baby. I can't help sorry.

abastian00 · February 2014

I wish I had something helpful, but sending you good thoughts! I know this is a lot to have on your mind.

kibean · February 2014

T&Ps for you and LO!

winterstar1 · February 2014

No experience here either, but praying it's nothing serious!

Lindsleigh77 · February 2014

I wish I could help or had some info for you. I had an umbilical cord cyst found near baby's insertion site at my a/s and it went away on it's own by the next ultrasound 4 weeks later. Thoughts and prayers that your baby's cysts do the same thing. Big hugs.

Cherylwang · February 2014

I hope it turns out to be nothing serious. Fx for you.

ELC252011 · February 2014

No experience but sending lots of T&P

JNYLP · February 2014

Praying for you both!

erind228 · February 2014

I don't have any experience either, but I'm sending you thoughts and prayers.

nunzchucks · February 2014

FX it turns out to be nothing!

lest12 · February 2014

No experience but I hope everything is ok. Sending thoughts and prayers.

ahopkins0419 · February 2014

T&Ps

JNerd · February 2014

Praying for both of you!

kittenslove · February 2014

Thank you ladies! This weekend has been hard, but trying to not think about it. I have a followup scan on Monday at 1:30. Will update when I have more information.

wtfisup · February 2014

I just want to say that cysts and rumors are often NBD. It seems scary, but they're a fairly common malformation in growth periods. They tend to be more of a concern when new ones occur in things that are no longer growing. (Hence, one an a baby, child, or teenager is often less of a concern than one occurring in a 40-yr-old). Just keep in mind that they're a really common part of living things.

Neuron79 · February 2014

Our baby has bilateral choroid plexus cysts (in the brain) which scared the shit out of us in particular since we are both neuropsychologists and used to seeing scary brain related disorders. We were told this condition can be a marker for a genetic disorder but since the genetic testing was normal, apparently it's just an incidental finding that invariably resolves. Point being, it could turn out to be absolutely nothing but we can relate to that heart stopping moment. Hoping for the very best for you and baby!!

kittenslove · February 2014

UPDATE

Thank you ladies for your thoughts and prayers, it is nice having this board for support.

The specialist diagnosed Sacroccygeal Teratoma (SCT). Basically, the baby has a tumor the size of a baseball hanging off the tailbone. The spine is not involved, although strain on the heart is now a worry. At this time, we do not know if the tumor is growing inward/other organs are involved, but are going in for an MRI tomorrow morning. I will be continuing my care at the Childrens Hospital of Philadelphia, where they will decide if fetal surgery is the best option, or a planned early c-section is the best course. I will keep you updated as I can.

Lots of love to you all,

Danielle

liberty95 · February 2014

Thanks for update - hoping the MRI shows the least invasive path and you get an established plan of care for you and your little one soon! You are in great hands at CHOP. I have a few friends who work/worked there as nurses and the entire facility is top notch.

MrsCase1 · February 2014

Thoughts and prayers for you! Please keep us updated!!

dmahanWed170597 · February 2014

Our Baby has a cpam which is a tumor in his chest. At first I couldn't stop crying because all we could do was "wait and see" how it developed. It has been 6 weeks and it is still not effecting his development. Just remember anything can happen including the shrinking as the baby gets bigger. T&Ps go out to you and your family.

kk627 · February 2014

Thoughts and prayers go out to you. Praying that baby will be okay!

hjl050308 · February 2014

Sending you lots of prayers. CHOP is a great hospital, I'm sure you and your baby will be in good hands.

colllydon · February 2014

I'm sorry to hear that. Hopefully the next scan gives you a better idea of what is going on and a more positive outlook. We will all be thinking and praying for you.

MommaAshley12 · February 2014

Many thoughts and prayers for you and your sweet baby. I hope the docs come up with a great plan and that they are able to treat the cyst/tumor with a full recovery for baby. (((Hugs)))!

abastian00 · February 2014

I'm glad you're getting closer and closer to more answers! FX for continued good news!

Brittnic531 · February 2014

Thinking of you and your little one! I hope you get some more answers with the MRI and the best plan of care!!!

BrendaW09 · February 2014

Sending thoughts and prayers your way, I hope you get some answers with your next scan.

chloephoebecali · February 2014

Thought and prayers.

ELC252011 · February 2014

Sending lots of prayers. Wishing you and your LO a safe recovery.

JmeJoLee83 · February 2014

Positive thoughts coming to you and your little one

lest12 · February 2014

Sending thoughts and prayers to your little one. I hope everything works out ok.

kibean · February 2014

Thinking about you and sending lots of thoughts and prayers. I hope you can get some more information at the scan and that the great doctors at CHOP can work their magic for you!