Update: ultrasound done

Posted 02/26/2013
I had an ultrasound yesterday about a month after being told my baby has a fatal diagnosis. The doctor said she's growing well, she's a little over a pound now and everything was looking good of course except that she has hydrocephalus and they can't see a spine due to the Amniotic Band Syndrome. The doctor said the prognosis was still "bad" but a month ago he told me it was fatal, now he was basically saying there's a possibility that she may live but she will be severely handicapped. Before the prognosis was that she will die. My first instinct of course was absolute happiness to hear that my child may live, but then came my guilt. That I would bring my child to suffer.
My frustration is also that I'm not sure what I'm
Suppose to expect at these appointments. They seem to be regular OB appointments but in other posts people are more informed by their doctors, for example I hear a lot about geneticists and measurements. I just hate feeling like there's something they can do for her now and they don't even bother. I'm feeling like they have diagnosed her as "not compatible with life" so they don't even care to help her.
Sorry for the long post. You are all the only ones who understand.

Comments (8)

Ialreadymissyou · Original Poster
Posted 02/26/2013
I forgot to mention that the doctors told me that they would schedule a c section at about 37 weeks. I don't know what to do about that. I feel like I should wait as close to 40 weeks. Their answer was that after 37 weeks it's just growth for the baby but not development, so it would reduce stress for her to be out at 37 weeks.
Advice? What has been your experience?
Posted 02/26/2013

Hmmm. With a healthy baby those last few weeks are very important so it irritates me that a doctor would just blow them off especially if there is a chance your sweet girl can make it. My advice is it sounds like you might need to be a bit more agressive. Go with your heart if something bothers you, speak up and ask questions about it. For the most part I was greatly ignored and seen as hopeless to my doctors. It was great to see their amazement when my daughter was such a fighter and stand in aww over my husband's and my love and commitment for her. I kind of wish I would have spoken up more during my pregnancy. 

They probably don't want to give you false hope and they probably do not know what they can do either. Your case is hard because it is unique. I cannot tell you what to do but if I was given any hope, I would cling to that while also knowing all possible outcomes and make sure the doctors understand and respect this view. 

Also, do not feel any guilt. You have done nothing wrong. You have given your daughter her life so far and what a great gift that is for both of you. Suffering is a part of any life. I know your fears. I have been there too but you have not created this situation. Your job is to do what is best for your daughter and sometimes as parents we have to bare seeing our children hurt. It is a hard truth for any parent. If she has a chance at joy in life you should be proud you gave her that opportunity. 


Andrea wife of Andrew mommy of Avia (7yo) Jamie (1/22-24/11) Rainbow Calvin 1/22/12 



Posted 02/26/2013
I'm sorry you aren't feeling very supported by your doctor. Is it a perinatologist or an OB? I switched to a perinatologist because my OB office seemed clueless. They even told me the brain and heart looked great when there were definitely abnormalities. My perinatologist didn't go as in depth with screenings as people have mentioned on these boards, but he always looked closely at the heart and brain, as well as growth. I was kind of surprised that they didn't have me do the glucose test. When I asked they said they don't do them in cases like mine. I was kind of mad because I thought it was an important test to monitor my health. I did meet with a genetic counselor, but that was only because I had an amnio. It makes it harder when you feel like you are getting brushed aside because of your baby's diagnosis. Just try your best to advocate for you and your sweet baby, and maybe ask to see a specialist if you can (unless your doc is already a specialist).
Posted 02/26/2013
Would the ABS progress over those last 3 weeks? That might be the concern for the early delivery.

I'm glad they are giving you more hope. Hydro is typically treatable with a shunt. And, there is such a wide range of outcome for ABS. Many prayers your little one will be a happily little miracle.

Amy ~ Mom to Parker Elizabeth



Posted 02/27/2013
Some drs w a fatal/poor diagnosis will want to do the early delivery. Some for valid reasons and some for not. If you want to go to 40 wks then you should be able to. It's up to us as moms and parents to speak up for our children so anything you're not sure about or if you have questions let them know! I know it's not easy sometimes but we are the ones paying them for care and if we aren't satisfied with that care we have a right to change it whether it is addressing it or switching drs. Do what you need to do!



Posted 02/27/2013

I completely agree with the comments about inducing earyl. Unless there is cause or benefit, most babies are best to go to full term. I have heard of countless examples where the parents are told particulary grim or negative information at the time of diagnosis. I wonder if this is because they assume most people will terminate and it is easier for those who make that choice to know that their decision was the right one as the doctor said there was no hope, or the baby would suffer etc.

There is a large facebook group devoted to this condition. If I were you, I would get to know many families and learn as much as you can about the "lived" expereince of this condition. Here is the link:www.facebook.com/groups/2353684860/...

Alll the best to you.



Posted 02/27/2013
I have a couple comments so bear with me :)

First, I only have regular ob appts. My doc told me that there is nothing they can do medically so if I don't want to be seen more often or have u/s than don't do. It won't change the outcome (t18)

Second, I had a long talk with a neonatologist about diagnosis and doctors. He said they walk a fine line between making sure parents know how serious this diagnosis is and leaving with some hope for their child. It's really tough, you don't want a parent to be surprised when their child passes but you also don't want them to think that because their child is surviving they should be put through endless surgeries because they are a miracle baby who beat the diagnosis when that is not true either.

It's a tough call either way and I know the are some docs out there who lack compassion, but I also like being given a realistic view of what's going on.

Sorry you are dealing with this, the whole thing sucks, I know that.
Posted 03/01/2013

From what I know, the concern at the end of the pregnancy is that the baby's lungs are developed enough. Usually it is safe to deliver babies at 38 weeks. My first daughter was induced at 38 weeks and my second daughter was delivered via c-section at 38 weeks. Neither of them had breathing problems. I think there is also an amnio that can be done towards the end of pregnancy to check for lung function. You might want to ask about these things and get a second opinion.



Mother of Casey Lynn (3/06), Aubrey Myers (4/30/10 - 5/01/10, Thanatophoric dysplasia), and Avery Sue (2/16/12)

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