“Never give up on something that you can’t go a day without thinking about.” ~Unknown
Exactly one month ago I received the shocking phone call suspecting something was wrong with the baby. In the last month our world has been turned upside down with the news that our baby has spina bifida. It’s been an overwhelming, exhausting, and emotionally trying month for us all where we’ve contemplated the biggest decision our family has ever faced. After undergoing countless appointments to undergo ultrasounds and MRI’s and to consult with my obstetrician, the pediatric neurosurgeon, a genetics counselor, the coordinator of the MOMS study, and the spina bifida clinic we’ve finally come to decide that there’s absolutely no reason to give up on this baby. The ultrasound and MRI last week as well as our appointments with my obstetrician and the pediatric neurosurgeon have helped give us a great deal of hope and optimism for this little one to experience life in less than 19 weeks. I thought this fetal MRI image from last week was remarkable enough to share with you all.
Late last week I underwent 2 fetal MRI’s. The baby was very active and made the MRI process a challenge. The first MRI lasted about a half hour and the second one lasted about 40 minutes. Thankfully the two attempts were enough to give the radiologist and the pediatric neurosurgeon a good enough view to help give us more insight into what our little one is up against. It’s very rare that they order MRI’s during pregnancy, however, given the fact that the opening in the spine appeared so small on the ultrasound they wanted to be sure they weren’t missing anything. Our pediatric neurosurgeon was able to help us better understand things while showing us these images. Thus far the baby’s brain appears to have no issues to be concerned about but this will be monitored throughout the pregnancy and I’ll be undergoing ultrasounds every four weeks to keep a close eye on the baby’s progress. Through the MRI images they were able to view the opening on the spine more clearly. If you take a look at the image you may be able to notice the spine near the tailbone that begins to move toward the tailbone. This is where the opening is, which is in the sacral region of the spine. That’s a fancy way of saying it’s in the lowest region of the spine, which is the absolute best scenario for us to be in. That along with the fact that the opening appears to be very small makes all the doctors that have talked with us to believe the baby should do quite well and may be spared many of the more trying issues known of spina bifida.
Of course there are no guarantees and we really now must continue to wait and pray this little one remains strong and is spared any further issues. Due to the high AFP levels the doctors believe this is an open neural tube defect, meaning the spine is open. However, taking a look at the MRI image with the neurosurgeon today makes us all wonder if there’s membranes or skin covering the opening in the spine. Right now there are a lot of uncertainties about this as well as whether or not the baby will develop hydrocephalus. This whole last month as we’ve struggled to make this decision I remember part of me just wished maybe we didn’t know during pregnancy but now that we’re confident we’re not giving up we’re grateful to know the baby and I will receive such thorough medical care to help continue to give us the reassurance needed until and after the baby is born.
FEELING BLESSED.
I admit most of this month I have felt cursed. I’ve wondered countless times why our family has had to endure so much and now to have this diagnosis it still makes no sense. But in the last week the news we’ve received has given us an incredible amount of optimism and has eliminated the thoughts of termination from our minds. We felt this last week, but we held our breaths in fear of any worse news so we waited and waited all week to hear the results of the MRI which confirmed all the things from the last ultrasound. And though there certainly are still risks and things we will need to be concerned about in the months and years ahead, we are feeling so blessed that right now we’re in a “good” situation given the fact that the baby has spina bifida.
We can’t thank you all enough for the outpour of love and support for our family. In the last month we’ve had so many friends, family, co-workers, students, teachers, and even many others that have reached out to our family. I know in sharing this news along with so many of my thoughts this past month that I’ve probably touched quite a few of you emotionally and yes, I’ve come to learn I’ve even unintentionally hurt many of you, especially the parents of children with spina bifida. I still feel it was a necessary part of how I’ve come to cope with this news but hopefully it alleviates all of the fears many may have had this month as we were for the first few weeks contemplating termination as we feared the worst. That is something I never ever wanted to happen to my family and I know those that know me and realize how much I’ve been through after enduring 3 miscarriages and many years of trying to conceive the children I do have that just “giving up” wasn’t something I was trying to justify through things I’ve written on my blog or through the poll I shared. It’s incredibly tough to give up on something you’ve wanted for so long, even more so when I’ve already made it half way through a pregnancy. To me this is just one more sign of this baby’s strength…only the strong ones last this long so we can’t wait to see what a fighter this little one will be.
A FEW QUESTIONS
Over the last month I’ve had a few questions pop up and I figured I’d answer them here because I imagine I may have more of you out there wondering the same things.
Why aren’t you doing the MOMS research study?
There was one day that I really thought that option might have been best. I know those doctors have the most experience with spina bifida babies. However, between the fact that the study is randomized and I’d not be guaranteed which option until committing and that it would put a huge burden on our family taking us away from home for months at a time which includes through my children’s birthdays and holidays I just don’t feel it’s the best option. Everyone agrees the medical care is top notch in Orlando and because there’s no proof that the study will improve things any we just don’t think it’s worth taking that huge of a risk. And I suppose I also have eerie reminders of last October where I felt like after a simple D&C procedure my body just had a tough time recouping which lead to 3 surgeries and other medical concerns so I just don’t think putting my body through two major surgeries that will put the baby and I at risk are worth it. Add in the fact that we feel so comfortable and confident in the medical professionals caring for me and the baby that I am confident we’ll be well taken care of all while being close to so many here in Orlando who have given us great support over the years.
I saw some people refer to the baby as a boy or girl, can you please tell us what you’re having?
No, I can’t. And I can’t because I don’t know. If people have referred to the baby as a “she” or “he” they must be making assumptions. We plan to not find out the baby’s sex. We did this with Hope and it was by far one of the best and most memorable surprises.
Have you decided on any names for the baby?
To be honest, just as we began to contemplate names we got the news that the baby has spina bifida so I refused to even think about names. We do have a few ideas but nothing we’ve agreed to yet. There’s no need to ask us about the name, because just like the baby’s sex, we plan to not announce the name until after the baby is born.
Do you know when you’re having the baby?
My due date is March 8, 2011. I can guarantee the baby will be born before that day. This past month we’ve been talking with my obstetrician and the pediatric neurosurgeon about having a normal delivery versus a c-section. And though there are studies that show there may be no major issues having a normal birth they feel it is best for the baby to do a c-section. It’s believed it can reduce the risks of infection because the delivery through c-section is less traumatic for a baby and it’s less likely that it’ll damage the baby’s spine further. We don’t want to take any risks so for the first time I’ll have a c-section which I admit does leave me quite nervous but ultimately I want what is best for the baby. Scheduling a c-section would also help all the medical personnel needed to be nearby after birth to attend to the baby’s needs. We’re guaranteed the baby will be in the NICU and that the neurosurgeon will there once the baby arrives prepared for surgery within the first 24 hours if it’s needed. Right now if all goes well with the remainder of the pregnancy my obstetrician wants to deliver the baby between 38 or 39 weeks. He fears that any sooner may lead to the baby having fluid in it’s lungs and we all agree we want the baby to be as strong as it possibly can be after birth. So obviously how I and the baby do the remainder of this pregnancy will be the determining factor but right now it’s looking like our family will greet this little one in late February.
Yes, that means there’s only 17 or 18 weeks to go…
Thanks again — you all have been amazing.
You do have good news and I am happy to hear that. Will continue praying.
Cheers!
by Amanda Kern
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