Wednesday, August 24, 2005

No surgery for us

In the end, the baby qualified for the study but I did not, because of uterine problems.

I'm writing this from the Ronald McDonald House in Camden, New Jersey, where my mother and I have been staying during my evaluation for inclusion in the MOMS study. My father came with me too, which is very special for me because my parents are divorced and I haven't had many chances to be together with both of them since I was nine years old. (My husband couldn't come to the evaluation because he just started a long-awaited new job last week.)

On Monday, we had an incredibly thorough workup at the Children's Hospital of Philadelphia (CHOP). I can't say enough good things about the people there. They are a dedicated and caring group of professionals who could not have done more for me and the baby -- both to give us our chance, or to take wonderful care of us while we were at CHOP. Also, many thanks to Teendoc -- I am quite sure that without her "heads up" about us to Dr. Adzick, who leads up the team at CHOP, we would not even have been evaluated.

Initially I thought that things were going our way, because the very first test -- an ultrasound -- showed that my placenta was at least two centimeters away from my cervix. I could not believe it! Now my placenta is classified as "low lying," and I no longer have a diagnosis of placenta previa. I had also been concerned that I would not make the body-mass index limit of 35, because I am carrying a lot of extra pounds after my years of infertility treatment and failed pregnancies. But I made it with about ten pounds to spare.

However, during that same ultrasound, a few complications were found that I did not know I had until I came here. One was that the placenta has a kind of "offshoot" floating by itself, still attached by blood vessels but not part of the main body of the placenta. I have forgotten the medical term for it. They said this was a variation of normal and not much of a problem in itself, but it would further limit where they could make an incision. Also, they discovered a couple more small fibroids in addition to the large one I knew about. These were not in a place that would cause a problem, but apparently fibroids "irritate" the uterus and would place me at greater risk for preterm labor if I had the surgery.

Lastly, it looks like as the placenta grows with the baby, it might try to expand on top of the large fibroid. Apparently the risk there is of separation of the placenta and uterus at that point. Also, the baby's blood supply won't be as good "through" a fibroid than if the placenta were attached to normal tissue. Even without the surgery, there is the possibility that she won't get enough nutrients and may have to be delivered earlier than normal. Her growth will have to be followed through serial ultrasounds, which we were going to have anyway for the baby's hydrocephalus.

The doctors said that none of these by themselves would have been enough to exclude me, but taken all together, the risk of preterm labor and prematurity for the baby might be as high as 25% if I had the surgery. The consequences for the baby, if she were born before about 28-30 weeks, could be very serious. The doctors were not willing to take the risk on me.

We did not learn anything more about our daughter's condition, except that the fetal echocardiogram showed her heart is entirely normal. As we'd been told before, her lesion is at L4-L5, and she has hydrocephalus and Chiari II. The doctors said that in general terms, we can expect loss of function from the knees down, as well as bowel and bladder impairment. She will be able to have sex but without sensation, and bear children normally with c-section deliveries.

She may have learning disabilities or an IQ that is about 10 points lower than a normal sibling's might be, but on the other hand, some spina bifida children are "geniuses." To some extent, her intelligence will depend on whether she needs a shunt -- as about 80% of chlidren with Arnold Chiari II malformation and hydrocephalus do -- and how many complications she endures from the shunt. At this point her feet are not clubbed, but that could develop as the pregnancy progresses. The doctors would not speculate on how much her condition will degenerate from now until the time when she's born and can have her back closed.

So, it's over. I am heartbroken that another defect in my body has harmed one of my children. My faulty ovaries resulted in the deaths of my first two babies, and now my fibroid-infested uterus has prevented this baby from getting what she needs. Or at least, having the opportunity to be randomized into the surgery group.

The doctors and others on the team emphasized over and over again that it is just not known whether there would have been a benefit from the surgery significant enough to justify the risk of premature delivery. But I believe in it. These are brilliant doctors. If they did not think there were a benefit to the surgery, they would not be doing the study at all. The purpose of the study is to prove the benefit of the surgery so that insurance will pay for it. All one has to do is to go back and read Dr. Adzick's press clippings from around 1997, to know that he believes in it wholeheartedly. My baby simply had the misfortune to be born during the study period, and to be growing inside my defective uterus.

There is nothing more I can do to help my baby until she is born, and I am going to have to live with the knowledge that every day of the pregnancy, her condition may grow worse. I see her little legs moving on the ultrasound screen...her feet even flex, which I was told is rare for a spina bifida child...and it's an agony to know that by the time I deliver her into the hands of people who can help her, she may not be able to do that anymore.

I am told that I should take comfort in that I did my very best that I could for my little girl. But what is a mother to feel when her best simply isn't good enough? I suppose I had better figure that out...because I am sure I will fail her again and again in the future, no matter how hard I try. Maybe that's something all parents have to face, whether their child is disabled or not.

Thank you all for your prayers and good wishes. It means a lot.

20 comments:

Heather said...

I can offer you nothing but to sit quietly at your cyber side with a box of tissue and offer you my hand. Best wishes for you and daughter - I hope she keeps flexing those feet of hers.

Diane Burns said...

Bee-

You really must stop beating yourself up! You are going to be an intelligent, motivated, loving advocate for your daughter. That is more important than any surgery you or she will ever have! From experience, I confirm that I constantly make parenting mistakes with all 3 of my daughters. God made none of us without faults, and I thank Him for that. How would our children be able to live with a perfect parent....yuck. Anyway, I know you had alot of hope tied up in the surgery, and I am sorry that it didn't work out. I really hope that you contact me someday and say you'd like to meet my daughter. It sounds like they are pretty similar in utero.

She lost her second tooth last night, and while I was laying with her in bed she said. "I can't go to sleep. I'm just too happy!". She loves being alive.

Jessica said...

I'm so sorry things didn't work out as you hoped. So sorry. But you know that it isn't your fault in any way, shape or form, don't you? Some things just happen for no apparent reason at all. There is nothing you could have done beyond what you already did. Your daughter will have a full life, because her mother will love her beyond anything and guide her and guard her until she can fly on her own wings. She will love being alive, inspite of having some problems, because that's what children do. They are such hardy little buggers if only they are loved. And from what I've read, you will continue to seek out the best possible treatment and support for her, just like you're already doing.

Your little girl is so lucky to have you, Bee. I really mean that.

wessel said...

Oh Bee, I am so sorry and disappointed for you that you can't have the surgery. But you are right--you have done all that you could do up to this point. Now the rest is up to G-d, or fate, or nature, or whatever forces control the universe. At least you are forearmed with information and the whole team will be ready and waiting for your daughter when she is born. I know much has been made of how the situation can get worse over time, but what about the possibility that the situation could get better over time? I don't want to offer pie-in-the-sky hopes, but there is a lot we do not understand about the body's ability to heal itself. Thinking of you and wishing you all the best. Please keep us posted.

Wishing4ababy said...

Dear Bee,

My heart is breaking!! What words can be said to help ease your pain, I do not know. I can just simply say that I feel the pain in your words and my tears keep falling. I see you holding your precious little girl up to your cheek, and my insides just break apart.

I know the pain of IF, and I myself, may have to face a life without my own child, but my God, my pain just seems so insignificant and pales in comparison to all that you have been through.

Please don't beat yourself up, you are a wonderful Mother! How lucky she is to have you. You have not failed her, you had no way of knowing what the inside of your body was doing. I, too, had fibroids, they just happen.

You have not failed her yet, nor will you fail her throughout her life. Oh certainly you will make mistakes, what parent doesn't, but that is not failing. Your love will nourish her and she will glow in your light. And because of that, she will become a beautiful person so that you bask in the glow of her light. How lucky she is to have been given you as a Mother. Someone else may not have given her the chances that you have. God will bless you both, you'll see. Maybe not just yet, but in time.... So please try to think positively. It will only help you and your darling baby. I know it must be extremely difficult but please believe that things will be OK. I can imagine you in my mind's eye holding her and all the anguish that you are feeling now, will melt away, just like snow.

I realize it is easy for me to write those words, and so difficult for you to live. I truly believe that there is a power to positive thinking, so please, please try!! Maybe things will be difficult from time to time, but then again perhaps they won't be as trying as you may think.

Again, I am in the next time over from you now, if you need anything just post me on the Over 40 with High FSH. I realize you don't know me but I think about you and your baby all the time, and I just want you to know I care...

Wishing4ababy

Amanda said...

I'm so sorry, praying for you and your family.

Amy Linder said...

Take care, Bee. In talking with my friends at the SBA chat line I know that all of our parents were told the absolute worst case senarios for how our lives would proceed. But in reality we have all had far better lives than the doctors have forewarned.

Please do not be so hard on yourself! I know that is easy for me to say, but I hope you can try. This is not your fault and there is nothing you could have done to prevent it!!!! I guarantee you - your daughter will love life - love HER life - becasue of her wonderful parents and the unconditional love that you provide for you. You need to be that strong person that helps her accept herself and love herself for the beatiful, talented, intelligent person she is sure to be - if you are beating yourself up over her SB because you feel it is your fault then you cannot be completely there for her. I know for myself I have NEVER felt sorry for myself concerning my disability. I NEVER thought I was really missing anything because I NEVER had it to begin with. My life is terrific and my family is wonderful. I've done so many awesome things - travelled, participated in fun activities, dated, married and now have my beautiful healthy daughter. Your daughter's life is sure to be equally as great - help her see her dreams and goal come true and she will fly.

I am happy for you in that you and your doctors know about her SB now and will be at the ready when she arrives to help her to the best of your abilities. I believe it is a blessing that you found out when you did. Could you imagine finding out at her birth that there were health concerns for her? - as was the case for my parents and most of the parents of my SB friends of my age. You now have the tools ahead of time to learn all you can about SB and to work with your doctors towards the greatest good for your little girl.

I feel that this is a very rambled comment for me - so much to say to you and to tell you how much I feel for you. Please take care and prepare yourself to be the best mom ever to the most loving, exuberant, full-of-life little girl you have ever met. I can tell because she already seems like such a fighter (look at those little feet flex!).

Waiting with you in anticipation of the first time you can hold your beautiful girl in your arms....

Amy :)

stefanie said...

Bee,
I've been following your story from the beginning. I check on you often and can only offer prayers that you and your little girl will be ok. You have been through so much, don't beat yourself up. Everything happens for a reason and the world will be a better place with your little miracle in it. God Bless.

Anonymous said...

Oh sweetie,

I am sorry about the disappointing news. I wish there was something I could do for you and your little one but all I can offer is prayers and healing thoughts.

Please keep us updated on your meant-to-be daughter and take good care of her mother.

June

thalia said...

Bee, I'm so sorry that the surgery option didn't work out for you and the baby, and hoping that all the good signs you currently see on the ultrasound will continue.

chris said...

My thoughts and prayers are with you and your family.

Anonymous said...

You're in my thoughts and prayers Bee. I'm sorry about the study.

Please don't beat yourself up. I know it's hard not to, after the long road you've been on, but it's not your fault.

I hope that the good things in your daughter's progress continue.

Emily

Anonymous said...

Dear Bee,

I am so sorry to hear this disappointing news. Please know that this is not your fault at all and you are doing the very best you can for your little girl. There are many things in life that are so completely out of our control and all we can do is try to make the situation better. You are doing all you can so that when your little girl is ready to come into the world, she will be greeted with loving parents and a ready team of doctors to take care of her. You have my prayers and good thoughts. Please be good to yourself and please let us know how you are doing.
Ade

JennaM said...

I'm not sure how to articulate what I have felt as I have read your story. I will be starting an ED-IVF cycle this fall, and while I am very happy with those plans, I already feel so tired, so wary, so...raw. I am terrified by what has happened to you, and yet I am so grateful that you are here, writing about it, because it shows me how much strength is possible in the face of disappointment and fear. Your ability to describe the complexity of your feelings and thoughts is an inspiration, and I hope that I will be just a fraction as brave and determined and thoughtful as you are in the months ahead.
Thank you.
Wishing you all good things in the world...

April said...

I am so incredibly sorry.

My thoughts and prayers will be with you and yours.

Susan in CA said...

Bee, what can I say? Words seem inadequate. You are an incredible human being and should not blame yourself. There is so much unfairness in this world. You have had more than your fair share.

As someone with a disabled child in my family, I can tell you honestly that while it hasn't been easy for her parents and grandparents, there is not a child loved more or a child who loves more. I have been amazed at the strength, wisdom, and courage my cousin has developed as a result of her child's challenges. While you shouldn't have had to rise to this challenge, you will rise to it and shine.

Please take care of yourself. I am so sorry you are going through this, but know how fiercely you will love your daughter and will fight for her (you already do, but those feelings will increase tenfold when she enters this world).

Anonymous said...

Dear Bee
I am so very sorry for all that your are going through. You have not failed your child. I wish i could hold your hand and pray with you. I am just going to pray that your baby continues to flexs those feet of her! With lots of hugs and prayers Nisha

Anonymous said...

Bee,
I am simply gutted for you.
I had not visited your blog for a while as my life has been extremely busy. This was the last thing I expected to read as I kind of felt like we were sharing a journey of DE together, even though I don't know you personally, I have taken courage from your words in my own low moments.
I don't know how to express how I feel that this is so unfair. Yet, I take heart for you in the beautiful words written by the people who have SB and are letting you know that they love life as much as a "normal" child/person.
I am sorry that the study has not worked out, but please, please stop blaming yourself. You tried! You have done everything possible and I know you will do everything possible to make sure that your daughter's life is a good one.
It's not your fault, you didn't do anything.
Having said all that, I have a friend who was born with CP and she has managed to live a very full life. I realize it's not the same thing, but she is physically challenged, but has learnt to cope in her own way... God forbid anyone treat her differently :)!
My thoughts and prayers are with you.
Kat xx

Anonymous said...

Bee -
I stumbled on to your blog by luck (my husband and I are beginning a DE cycle in October). I haven't figured out yet how to find more current posts, so my apologies if this comment is no longer relevent. First, my heart goes out to you. I can't imagine the pain of being able to see those moving feet on the ultrasound and not being able to do anything to help. Second, I just wanted to say that I know of a child with a similar in utero diagnosis to your daughter, who was delivered early (at about 35 weeks, I think) via gentle c-section in an effort to prevent paralysis - her nerve remained intact through that delivery and she has no paralysis (or any other side effects) now. (The doctors said a vaginal delivery would have undoubtably removed the lesion and resulted in paralysis. They were also concerned about letting her get any bigger because the tighter quarters would increase the odds of the lesion being rubbed off and the nerve exposed and damaged.) This was quite a few years ago, and it was really at the insistence of the parents that she was delivered early - the doctors were not convinced it would help. But it did...

Also, I volunteered for 17 years at a summer camp put on by the local children's hospital. The camp was for children with medical conditions or disabilities that would make it difficult to attend other camps. I often had girls with spina bifida in my cabin. Almost without exception they did well, had full lives, were in regular classrooms in school, etc. The girls with lower-down spinal openings could walk and handle their own toileting needs (as well as dressing, etc.) They all had the same range of personalities as the other children - some were delightful to hang around with, and some were more "challenging" children :) They would often compare stories with each other - what was it like in school, how do you handle going to the bathroom?, what can you feel?

I hope this is helpful. I wish you and your daughter the best.

Linda
PS: I post regularly on Fertility Friend, on the ttc over forty board, and in the DE group on that same board.

Anonymous said...

I came across this site, and was heartbroken to hear your story. To go through so much and now knowing you cannot help your daughter at this point in time. I have a sister with severe disabilities, because of being premature by 2 months. She is now 23 and the light of my mother's life. Belle has brought a lot of understanding, and love, to our family. Good luck and I wish the best for you, your husband, and daughter.

xo Kimberley