Felt better about editing my long rambling outpouring of feeling and felt the need to correct the name both of my child's diagnosis (meningocele is much less damaging than myelomeningocele, so that was wishful thinking) and of whether we might be candidates for in-utero surgery, which I am currently researching - you never know who else might need this info.
It appears that the information I was given so far (prenatal surgery to close the lesion in utero not warranted for a lesion covered with a cele) is wrong, as a myeolomeningocele is by definition open. However, the risks of in-utero surgery (prematurity and/or loss) may be too high for children with a sacral malformation, which tend to have much better prognoses than children with higher malformations.
Thank you everyone who offered support.
I wish I had some information or reassurance to offer you, but I just wanted to send you positive thoughts and good wishes. My nephew's club feet were diagnosed via ultrasound and know how hard and scary it is to hear something is wrong with your baby.
I know the temptation to jump ahead and make plans based on what ifs, but I really think your best plan right now is to live in the moment and wait for more information (easier said than done, I know!) After my son's diagnosis I came up with all sort of dire ideas about what this meant for him and for our family. It does present some challenges, but none are as nearly bad as my glass-half-full brain had created.
Hoping that someone with more information will chime in and that you have compassionate doctors to help you along this path.
So we have had the diagnostic ultrasound and so far the results are:
definite spina bifida (I knew that)
visible malformation of the spine in the S region (that's very low so that's good)
the lesion is covered by the cele (good)
enlarged ventricles (that is not good but only to be expected; the question is now. are they getting larger)
normal leg and feet development, as far as visible
normal leg movement so far, all good as far as it goes.
The diagnostician made it very clear that none of this means that we know anything about functional impairment down the road. Nor will we until the baby is born. But it is so far the best results we could hope for.
We are looking at a C section around 38 weeks and immediate surgery, NICU after.
Any one out there with experience?
Hello. I am a special needs mom, but I am also a nurse, and I work with moms who are pregnant with babies that have birth defects. At our Center, we are offerring innovative in utero surgery for babies that have beed diagnosed with Spina Bifida. I would be happy to talk to you about the diagnosis and provide education on treatment options available. Please feel free to call me at 1-800-468-8376.
RNspin, thank you for offering. I live in Europe so your Center will not be an option, and I have been told that as the lesion is currently covered, I am not a good candidate for in utero surgery at this point anyway, because the risks outweigh the potential benefits.
Thank you for asking, i think I am still in denial. Haven't cried yet and don't know whether that is good or bad. I am still hoping for issues to be very very minor but am not sure whether that is a good idea either, or whether it's better to prepare for the worst and then be glad it didn't happen. that's what they tell you over at the support forum I've joined - prepare for hydrocephalus because in most cases it happens anyway, but not to worry, shunting works really well. And so on.
Sometimes I just want to run away from this.
I am glad you have connected with others through a support group. I hope we can provide some general support, but obviously specifics from parents who have already been down your particular road will be helpful, too. I assume that you will be monitored closely throughout your pregnancy? Will future ultrasounds provide any more details about your baby's condition?
My experience was that I felt like I was on an emotional roller-coaster. I had some really difficult periods in the first couple of months after my son's diagnosis, but over time -- as I became more clear about who my guy was and what this meant for him, things have improved immeasurably. I suspect that finding out about your little one's special needs before you have even met him or her is especially hard. I wonder what you can do during your pregnancy to continue to bond with a celebrate your baby in the midst of these challenges?
On the blaming yourself front -- I think this is a really normal stage, too. My guy has ASD and my mother-in-law obviously does, too (hindsight is 20/20!), but I know that my family's genetic predisposition to depression and anxiety is likely a contributing factor, too. We all have ways to beat ourselves up, but there is also no way of knowing what was going on. Be kind to yourself, mama.