Another Newbie

[blessingsabound]

I just joined another support group, but stumbled onto this one as well--and I like it better, especially since there is a special forum for recently diagnosed babies!

It's been one week and 2 days since our world turned upside down, albeit only for a day. Since we didn't understand words like "myelomeningocele," our focus was on "fluid on the brain." We were envisioning giving birth to a serverely mentally disabled child. By the time we got out of the neonatologist's the next day, we felt like we were on cloud nine, rejoicing in the fact that besides a few side issues, our little girl would "just" be wheelchair bound.

Madeline (Maddy) has myelomeningocele at about the T-10/11 level. So far, in any of the posts on any site that I've visited, I've nt found another baby with it that far up. I know each child is different, and a diagnosis such as this doesn't mean that there's no way that she'll ever walk (I believe in miracles!), but I'm wondering if there's anyone out there that has a little one with MMC at the T-10 level.

I have so many questions, but a lot of them have been answered in the posts that I've read so far, and I have a ton more to read. Thanks for any advice that you can give. :)

Oh, and our original due date was August 4, but we're being "bumped up" to 37 weeks. It can't come soon enough. I'm so excited to meet this little girl!

[kali]

congradulations! a lot of us have been through what you are going through now! hugggsss thingd do get better, and yes miracles do happen. I was told my son most likely would be in a wheelchair,and thank God he is walking. so reach for the stars!!!!!!

[h+l+t08]

Hello! We've yet to find out exactly where Tegan's SB is but we know it is lumbar-sacral. My original EDD was 15th August so I imagine I should be having Tegan not long after you have Maddie!

All I can do is wish you the best of luck with your little girl :)

[angel]

I was told my son with SBO would walk just like me. I have myleo L4/L5 and i walk with crutches. They told me he wouldn't be able to potty train and all that stuff. I am happy to say he is 11 years old and walks unaided and he is fully contenent!!!!!!!

Angel

[Dodger67]

I think Spokie's son has a T10 lesion.
He is 8 or 9 years old.
Spokie help us out here please!

[blessingsabound]

Thanks so much for all of your encouraging comments. It certainly helps to see how "normal" life can be eventually, and that I wasn't crazy to be so scared at first.

[angel]

I think it would be abnormal if you were not scared!!!!

Angel

[babybiz]

Hi there, I'm new here too. We rec'd the diagnosis 3 weeks ago for our baby girl due 8/11 (but I will deliver at 37 weeks). There's so much discrepancy w/the Thoracic level info. Some places I read that there's less damage and others I read that the damage is the most significant. I'm researching like a crazy woman but I know that really ya just don't know til they get here.
Are you feeling kicking and movement? That's the weird one for me, I'm feeling it but not as much as my first 3 pregnancies. She was moving all of her limbs on ultrasound too. So many questions!
Feel free to email me and we can encourage and keep eachother up to date on any new info.
:) Dana

[Dodger67]

Upper thoracic - meaning T6 or higher?
Is there anyone else with such a high lesion on this forum?

Diagnosing the exact level of the lesion is almost impossible in utero - it becomes clearer later. Anyway the level as such is just a crude indication of what to expect - the specifics of the nerve damage differs in each individual.

We're all here rootin' for you and your daughter. You are welcome to ask our help about any issue at all.
Regards
Roger

[blessingsabound]

Diana, I haven't run into the information saying that sometimes it's not as bad, but if your baby's lesion is higher than ours (T-10/11), you may be right. At any rate, please keep me updated, and I will for you as well. We go back to Indy next week to see our neonatologist and meet the neurosurgeon, so I will be asking more questions, for sure!

God bless,
Pam

[blessingsabound]

Diana, I forgot to answer your question about movement. I've not felt nearly as much movement with this little one either. Finally in the last week, I've felt a few more twinges and maybe a "bop" every now and then. That's good news about your little one moving all her limbs on ultrasound!

Pam

[mommy2cnj]

[QUOTE=babybiz;1179] There's so much discrepancy w/the Thoracic level info. Some places I read that there's less damage and others I read that the damage is the most significant. /QUOTE]


Although neither of my children's SB is in the T-region, I just wanted to throw this out there to ya. I was told my son would have paralysis from waist down....my daughter from knee down. My son has paralysis from knee down and my daughter from ankle down. As you say, one just doesn't know until the babe is here.

I will not discount your "crazy" research, however......I have people call me to this day, asking me to look things up for them (oopsies - let the cat out of the bag!! Research mania, here!! :D)

Congratulations and best to you and yours!

Pam

[Spokie]

Hello all! Sorry, was offline for a while.

My child is now almost 9, with a T10 lesion. He is paralysed, but definitely not wheelchair bound - climbs, slides and skateboards more than anything else ;-)

Apart from the normal issues, he's doing fine, and is a bundle of joy. Any more questions? Fire away!

[Spokie]

Spoke to a contact of mine re high T-level SB. Apparently, if the lesion is very high, say T2 for instance, the child might be almost "normal". Apparently it is because the lesion doesn't go down very far, usually T2-T8, and the nerves are mostly undamaged and fully developed, with the lower back being closed and completely normal. Will see if I can gather more info on this...

[babybiz]

Hi,
I just stumbled on this thread...my daughter due in July has upper T-level (they think somewhere btw T1-T3) and I'm also finding the info either really positive or downright awful as far as prognosis. I know that ya really don't know til the baby arrives but I wish it were a bit more clear. Please keep me posted!
Thanks

[XoBLoNDiE85]

Hi i just saw thought you were due in July and thought it was kinda cool that we are due in the same month....July 19th over here. I'm goin c-section a little bit earlier but we'll find out for sure after we meet with the neurosurgeon may 12th. i'm gettin a bit more excited now, i was terrified but its gettin better. Well hope everything is goin well with you ttyl.....my name is Laura by the way =)

[babybiz]

Hi,
We just returned from the perinatologist and this is what we learned: I know it's lengthy...just wanted some more thoughts from y'all on the T-level lesions. The doctor said that T1 is really bad, ugh the info is all over the place!

The ultrasound really had mostly good news. Her brain ventricles still look great, no hydrocephalus. She was putting her hands on her face and trying to reach her kicking feet. It was really precious! Of course, the doc said that it was just nerves firing and doesn't correlate to the feet and legs moving after birth. The only thing to note really, is that her lesion/spina bifida has grown a bit larger. From talking with the perinatologist afterwards, it seems that it is very large overall but he has seen larger ones. It doesn't appear to encompass more than a couple vertebrae which is good news. The negative stuff he said was that it is so high up on her back, T1 he thinks..and that is very high regarding nerve function level. However, nerve function is one of those - don't know til she get's here things - surprisingly not an exact science. He has seen lesions this high but said that hers is "extremely interesting" because usually at the thoracic level they are even larger. He deferred many of our questions to the neurologist, who we will see on 5/1. One other question I had for the doctor was...is it possible that her lesion is meningocele (covered sac with no nerve or spine involvement) vs myelomeningicele (the whole deal). He said that he wasn't sure. We will be praying that it is only a fluid-filled sac and no nerves are involved. I'll be having ultrasounds now about every 4 weeks.

Of course, I got home and began doing a little research on upper thoracic myelo and meningocele. The research is all over the place but I did find some very positive stuff. Here's the site that says that thoracic involvement is usually meningocele and less severe: http://www.pediatric-orthopedics.com/Topics/Spina_Bifida/spina_bifida.html

And more positive information: Children with a lesion in the upper lumbar or lower thoracic areas will almost certainly need to use a wheelchair. Conversely, of the small number of children who are born with a lesion in the upper thoracic or cervical areas, only a minority will have limb paralysis. From: http://www.asbha.org.au/AskanExpert.htm

Thoughts anyone?
Dana

[mondragonl]

Was reading all the information and wanted to share our story. We found out about our daughters SB inutero also at 20 weeks. We went through a rollercoaster of good and horrible news about possible outcomes. But most doctors agreed that her lesion level was at the L4 L5 level, so we had a lot of optamism. When Emma was born it was apparent that her lesion was much higher in the T11 T12 region (it is still unsure her exact level). She was born with dislocated hips, severly clubbed feet, and a fractured femur, mild hydrocephalus, and chiari type 2 malformation. With no apparent movement from the hips down. Other than that she is perfect from the hips up, and the happiest, sweetest baby with a very animated, social personality. She is now 4 months old and developing very well. When she was born she was in the NICU for only 10 days after an estimation of a minimum 30 day stay. She has only had one surgery the closure of her back so far and the correction casting of her clubbed feet went extremely well. She is still under close monitoring for hydrocephalus but has not needed a VP shunt. It is impossible for the doctors to tell the lesion of the SB or the damage that has been done, even after birth. It appears to be a waiting game. Emma will probably be 2 or 3 before we can take the MRI to know her exact lesion level, and it is a daily adventure to see her functioning level. There are always unanswered questions with SB because each individual is afftected differntly, and each medical concern caused by SB is treated seperatly by many different specialists. I suggest becoming a member of your local Spina Bifida Association as soon as possible, they are very helpful. Congratulations, and stay possitive, your baby will be perfect and beautiful.