Wednesday, August 17, 2005

Going to Philadelphia

Now, don't get excited everyone. But, I'm thrilled to report we've been cleared to go to the Children's Hospital of Philadelphia (CHOP) for evaluation to see if we qualify for the fetal surgery that we want for our daughter. We are by no means guaranteed to get into the clinical trial, much less get the surgery -- but we are a step closer than I thought we would get.

I thought we were definitely out of it once my placenta previa was confirmed, but the coordinator of the MOMS trial sent my ultrasound images to one of the surgeons to take a look. He said that my placenta previa looked "marginal," meaning it is right at the edge of my cervix but not covering it. (This makes me laugh because so far I've been told that this placenta previa is "complete," then "partial," and now "marginal." That's all three kinds.) The surgeon said that the placenta might move far enough from the cervix that I would qualify for the study, and it was worth the trip to Philadelphia so they could evaluate me and the baby in person.

I think this is still a long shot, but if nothing else, I will have the benefit of another ultrasound (ha!), another MRI, and a fetal echocardiogram to tell me more about how our baby is doing. So wish us well! I will leave on Saturday and will be evaluated in Philadelphia on Monday and Tuesday. I'll have news to share by Wednesday about whether we made it into the trial and if we were then put in the surgery group.

We had all our appointments at our local Children's Hospital last week. Many of the professionals there were very positive about our baby's outlook, but we began to realize that a roomful of doctors equals a room full of opinions. Everyone agrees on the basics -- that our girl has spina bifida, mild hydrocephalus, and the Arnold Chiari II malformation, with normal brain development and chromosomes -- but they had slightly different thoughts on what her outlook would be. For instance, one doctor told us that there is no such thing as an "untethered" spinal cord when a child has a myelomeningocele lesion, because the cord always becomes attached to the skin and muscle around it. This is contrary to what we were told by the doctor who read our MRI results. It sounds like we will not know what is in store for our daughter until we meet her...and perhaps not for a year or so after that.

The neurosurgeon, who will operate on our baby right after birth unless we get our care in Philadelphia, gave us some news of concern about our daughter's Chiari. That is a condition in which part of the brain stem is down in the neck. Contrary to what I thought, hydrocephalus doesn't cause Chiari. It is the other way around, with the Chiari malformation blocking proper flow of cerebrospinal fluid (CSF) between the head and the spinal column so fluid builds up in the ventricles of the head. It's not exactly known what the relationship is between the Chiari malformation and the hole in the spine.

Fifteen percent of children who have Chiari II are symptomatic, and may have problems such as sleep apnea or difficulties swallowing. If our daughter is symptomatic at birth, she might die before she is two or three years old. This makes me all the more interested in fetal surgery, because one of the benefits seen in some infants is a reversal of the Chiari II malformation. The theory is that blocking the hole in the spine causes fluid pressure that might "push" the brain stem back up where it belongs. I asked why this would be true of fetal surgery, but not true when the surgery is done after birth -- and of course, no one knows. They think that possibly before birth, the Chiari malformation is not fully formed.

We also talked to a genetic counselor. I was dreading that appointment because I thought she might steer us toward abortion or forbid us to have another baby with our frozen embryos. But it turned out to be one of our best consults. She took a family history of my husband and of all that we know about our donor, and asked some questions about how I've taken care of myself in pregnancy. Then she said emphatically, "You did everything right. Most cases of spina bifida happen just like yours: Out of the blue, with no family history. There is no way you could have anticipated this."

She said that if we ever want to try for another pregnancy with our frozen embryos, that baby would have a 2-4% chance of spina bifida, and that I would be put on a mega dose of folic acid. I asked why I wasn't given it before, and she said, "It is only available by prescription and only given when there is a family history of spina bifida. No one would have offered it to you." She reassured me that missing a vitamin here or there would have had no effect. I even asked her about drinking tea. I have had a cup of black tea some mornings during pregnancy, with my OB's permission, since for me it soothes nausea. But I happened on a study on the Internet linking tea to spina bifida. I had hysterics until my husband found a more complete version of the study that blamed green tea. The genetic counselor said she's never read anything against black tea, and that one cup a day of anything other than toxic waste would never cause any kind of problem. She made me feel a lot better.

We also heard about how the baby would be transported from my delivery hospital to Children's shortly after birth. I was sad that I could not see her for a few days after my c-section. But my OB says she will get privileges at an "adult" hospital connected to Children's by tunnel. As soon as I can get myself out of bed and into a wheelchair, my husband can push me to her crib in the neonatal intensive care unit. That is where our daughter will be for 2-3 weeks after birth to have her surgeries, if we do not get into the study.

I had imagined not being able to touch the baby for all that time, but it's exactly the opposite. Mom and Dad can come in anytime day or night, and are invited to do as much of her basic care as they want to. The nurses are very in favor of feeding her with breastmilk if I can produce enough, though it will have to be given through a feeding tube after her surgery, and then by bottle, since she can't be picked up for awhile. And we were told they will not release her until we are comfortable with doing her catheterizations and any other special care she needs from her spina bifida, which was a big relief.

So, things are looking up. There will be many hard days ahead, and I'm frightened and depressed sometimes. Well, a lot of the time. But now and then, I can let myself imagine the moment when I finally get to hold my baby, and lift her to my cheek, and just breathe her in. I think in that moment, I won't regret a single instant of these years of struggle, or all the pain it took to become a mother. I think it will all disappear, and there will be only her.

19 comments:

Susan in CA said...

Bee, thank you for your willingness to continue posting on your blog. I just happened to check today to see if you had an update. You are in my thoughts and prayers, and I hope more than anything that your daughter ends up with the best possible outcome in all of this. I can't begin to imagine how difficult this is for you, but please know that you are thought of and cared for here in our cyber world. I'm glad you've at least gotten your foot in the door for the study.

Susan

Heather said...

I have only started to lurk on your site but I wanted to send my wishes to you and your family. good luck in Philly.

wessel said...

Bee, I don't want to get your hopes up, but . . . I think that these doctors very much WANT to include as many people as they can in the study because they know what it means. They are probably very frustrated that they have to "prove" themselves first via study results before they can help all patients. Kind of like how the bank WANTS to give you that mortgate loan . . . I believe that these doctors also want to somehow help you meet the criteria to be in the study. Take heart. I hope that all goes well.

Anonymous said...

Thanks so much for keeping us updated. All the best to you and your family. Hope everythig goes your way in philly.

Tricia

Anonymous said...

P.s. I totally agree with Wessel. I work in clinical cancer research and I can tell you we jump through hoops to get our patients qualified for studies.

Anonymous said...

Oh, Bee, your last paragraph brought me to tears. That little girl is so lucky to have you for a mother.

Keep us updated if you can and best of luck in Philly.

June

Amy Linder said...

So glad to hear your update and thrilled that you are getting a shot at going further with the study. As always, keeping you in my prayers and anxious to hear what's up next for you.

chris said...

I'm so glad to hear that you're getting positive news. I'll keep you and your family in my prayers.

Bridget said...

Bee, I think you have already taken that breath of her because your words show that unconditional love. I wish you had been my mother...what love you show for that lucky, sweet baby. Thank you for letting us into your world. It is a positive and uplifting place to be. Hugs, Bridget

Millie said...

I was soooo very happy to see your update today. I wish you and your daughter the best of luck in the city of brotherly love.

And Wessel is always right, but you knew that already. I'm betting she's right this time as well.

Anonymous said...

Bee, I'm so glad you're posting. I have tears in my eyes thinking of what a sweet moment it will be when you are able to hold your long-awaited daughter in your arms. You and your little girl are in my prayers.

Anonymous said...

Blessings on you and your husband and your baby girl. Safety and comfort in your journey and peace in your hearts. Bless, bless, bless.

Anonymous said...

Bee, I am just getting ready to start my first DE cycle after 3 failed IVFs. I started reading your posts just when you found out about your daughter's spina bifida. I came back to check the site, just to reread it, thinking that there would not be any new posts, only to very happily discover your later posts. You must be an amazing, incredible person. I agree with June and the others, your daughter is lucky to have such a loving, strong, spirited mother.
I look forward to following your story.
Muriel

diane burns said...

Bee-

I am so glad to hear that things are going well for you. We will pray that you get into the study as a surgery family and that everything goes well. I really wouldn't worry so much about the ACMII. I remember how frightening that component seemed to us prenatally, and now we don'e even consider it. Please keep us posted. I ran into Dr. Oppenheimer at the grocery the other day and she said there are alot of new diagnosis and births happening (it seems to ebb and flow). The good new is that your daughter will have friends that she can share with. Maria has 2 girlfriends within a year of her age. We have had one spend the night (as I could cath her) and we share swim teachers, dance instructors and surgery stories. It really is nice to be able to know someone else going through a similar situation. And when your daughter is complaining (as she will) that she is the ONLY one who has to cath, you can report back several names. It really does help them feel better.

We are thinking of you and praying for the best.

Diane

Pam in CA said...

Bee, I'll be praying for the best outcome for your little girl. Good luck in Philadelphia.

Anonymous said...

Dear Bee, With all that is going on in your life, I thank you for sharing this update with us. Good luck in Philly, I have a very good feeling about it.

I wish I could be a fly on the wall when you first hold your little girl in your arms - what a sweet and precious moment it will be.

My thoughts and prayers will continue to be with you. Big hugs.

Ade

Anonymous said...

Thanks for the update Bee. I'm keeping you and your family in my prayers. I wish you luck.

Emily

Anonymous said...

Bee,

Our congregation will be praying tomorrow for you and your little girl for better days ahead. God bless you and your family.


Melanie

Stephanie in MI said...

You are the reason that I am considering becoming an Egg Donor. I know the risks, the inconviences, and all the things that I will have to go through. But anytime that I have a second doubt, I will come back and read your journal and it will remind me why I am doing this. I hope I have the chance to help another woman just like you.
Good luck with the baby, and I hope she is doing well.