Friday, October 3, 2008

Today's Update

I hope I can remember everything correctly and write it out so that it makes sense to others.

We went to the hospital today to do some further testing and to talk with some specialists. I didn't really know what all this was going to entail going into it. We ended up having two ultrasounds done, one by the ultrasound tech and the other by the perinatologist. It was confirmed that our little girl has anencephaly (we were originally told that it's a pretty easy diagnosis to make - the brain's not there). It was also confirmed that she is a girl (and as I'm reading more on anencephaly, it turns out that it's more common in girls than boys). She also has a few additional problems. The umbilical cord normally has three parts to it, two of which are arteries (Tim will need to correct me if any of this is incorrect) and she is missing one of those arteries. She also has some water in her kidneys. The third thing is that there's a little gap in her heart. Tim might be able to remember the exact term or location. Basically, if this was her only problem, she'd have to have heart surgery as an infant. Given the situation that she will not live, she will not be having heart surgery. Both the umbilical cord and the kidneys are of no effect in this situation except to say that because of the other problems she has, it just seems like things with this little girl just weren't quite right from the start. As far as the heart goes, the perinatologist said that it will not affect her while in utero - she's getting her oxygen and support from me and that little gap won't affect her. If my understanding is correct, however, it might reduce her lifespan if she does survive the labor and delivery.

We then asked the perinatologist all of our questions - and I had a lot. As others we've associated with (and been very pleased with) the general feeling is we're here to support you in whatever decisions you want to make. A lot of my questions to her were more asking her to either clarify or confirm things I had read. If you're interested, I'll make a list of things we learned:
  • there aren't a lot of statistics out there because of the fact that many families choose to abort the pregnancies when they initially find out (so this skews the statistics of babies that die, etc.)
  • anencephalic babies are much more likely to be premature, as are any babies that have birth defects
  • anencephalic babies often don't cause a woman's body to go into spontaneous labor - the majority of these cases end up being induced
  • they are fine doing a c-section or having me do a vaginal delivery
  • the risk of the baby dying during birth greatly decreases with a c-section, but the risks involved to the mother greatly increase
  • anencephalic babies are in general smaller than other babies
  • because they do not have the full head, the vaginal delivery process may be a little different (i.e. the shoulders may be the biggest part to get through)
  • if she's breached and it's the feet first, her chances of surviving the delivery greatly decrease
  • if she's breached and it's the bum first, it does not change her chances of surviving the delivery
  • while some of these babies will die while still in utero, the bigger portion of the babies that are born stillborn, die during the labor and delivery process
  • they (meaning medical personnel) usually don't try to do anything medically to the baby after it's born - they want to allow the family as much time as possible with the baby while it is alive
  • if we don't want to see the openings (because there's no covering over the head), we don't have to - they can put a cap on her and swaddle her in a blanket
  • she does have bigger eyes (we found this out via the ultrasound) and then her head stops right above them and goes at a diagonal slant down
  • she's pretty active - even though I haven't felt her move that much she was wiggling through the whole first ultrasound and the tech really wanted her to stay still (they said that maybe I'll feel her more in a little bit since she's a little on the smaller side)

They also had us scheduled to talk with a genetic counselor and possibly do an amniocentesis today. We opted out of the genetic stuff. The perinatologist told us that a couple with chromosomes that when combined cause defects, have the chances of 1 in 6 of having a defect free child. Because of the fact that we have two healthy children already, she really doesn't think it has to do with genetics. Additionally, even if it was a genetic thing, it only slightly changes the chances of this occurring again. Which, in case you're interested, the chance of this happening originally was 0.1%. The chance of it recurring is about 3 to 4%. However, they insist that for my next pregnancy I take TEN TIMES the normal amount of folic acid for the two months leading up to getting pregnancy and for the first month thereafter. By doing this, we reduce the chances of this happening again to 1%. If it was a chromosomal thing, I think the chances of it happening again are somewhere between 1 and 3%. The only reason we would think to do any of the genetic stuff, is if it would help further research. While we might participate in some studies, the genetic stuff that they would have done at the hospital would really only be for our benefit and let us know if it was a chromosomal abnormality or not. And at this point, it doesn't really matter to us.

As a side note, Tim and I are no longer emotional wrecks. We are doing tons better, have fully accepted this, and are moving forward with what we need to do now. The initial shock did cause us much grief, and I'm sure there will be more to come when she does die, but for now we're doing much better than I thought either one of us would be doing. Thank you for your continued thoughts and prayers.

We meet with my OB/GYN again on Monday.


Hyrum and Kiera said...

You and Tim are such strong parents. I love you.

Andi said...

Wow! Thanks for the detailed update. This little girl has a lot to deal with, and you two are exactly the right ones to give her the best chance. I'm so glad that you feel support from the medical professionals, from your church family, and from a great network of friends and family. We love and pray for you! The way you guys have already felt sustained and comforted is an indication of the strong foundation you have established in your marriage - what great examples for all of us.

David L. Dorff said...

I am so thankful that this little girl has you guys for parents.

It is amazing to see the development of a support network. She is touching more lives than we know.


Gerald said...

I need to agree 100 % with both Andi and Dave. The peace and comfort that we feel, just knowing that you are approaching this as a spiritual decision is beyond our ability to communicate. We love your whole family (all 5) and will continue keep you in our prayers.

Courtney said...

Please know that I'm praying for you and your baby girl! Our daughter, Gemma also had a tough prenatal diagnosis,

I just wanted to let you know of a beautiful group where you can find support and order free gifts for your precious little princess, Just go to the "gifts of love" page and fill out the little form. Praying for you and your beautiful family.

in Christ's love,

David&Deena said...

Dear Tiffany & Tim, Your mother invited us to share you blog and I have found it very tender. We are proud of your faithful response to such a difficult turn of events. Our thoughts go back to years ago when we experienced a 'change of plans' when Chantel began to regress. The Lord knows you and will be with you along the way. Your names are in the Guatemala temple and in our prayers. Love David & Deena Christensen

Kristen said...

We love you!

whitney.evan said...

i am uplifted and inspired by your courage. how blessed this little girl is to have such wonderful parents and to be so loved. thank you so much for sharing your thoughts and feelings with everyone. i admire you and continue to pray for you!

Nigel said...

Let me know if there's anything I can do to make this easier.

p.s. Nigel is a pseudonym for Darren...

KMDuff said...

I'm glad you seem to have great support from the medical people to give you knowledge in all this. Hugs.

Sara Storms said...

I hope you don't mind me commenting on your blog. I found you through Kim Bishop's blog. I just wanted to say that I think you are so inspirational! I know this must be such a hard time, but I also know that it is so comforting to have the gospel and have an eternal perspective! My first son, Nicholas, was stillborn (at 32 1/2 weeks). We later found out that he had Down Syndrome and that is why he died. (We figure it was heart failure, since DS doesn't actually cause death.) Anyway, I know without a doubt that we will see our son again and we will have a chance to raise him!!! I am so thankful for my testimony of eternal families and temples!!!