A bad day today......

[melissa3075]

Had a fetal MRI done and the baby's SB is pretty severe with moderate hydrocephaly, but the big thing is that the baby's bladder never fills with urine - It has never been filled with urine at any of the ultrasounds, but there IS amnio fluid around the baby, which means someway somehow there is urine production. The doctor said there is enough wrong with the baby that he would be willing to consider the baby's condition lethal which would allow me to be able to terminate the pregnancy (by induction) at a hospital. I asked the MRI doctor what she would do and she said if she were in our situation that she would terminate - I asked the high risk doctor the same thing and he said if faced with that situation that he would not terminate, but that his wife would. I have to make a decision by Monday as to whether I want to continue the pregnancy or not - the high risk doctor said the baby may make it and that there may be some kidney function after she is born, but there may not be, it will not be known until she is born. I just don't know what to do............................

[smoop]

I'm so sorry to hear what's going on with your baby. But please don't abort it-- give the baby a chance to live. The doctors could be wrong! Obviously this is a personal decision for you to make but even if I was told that my baby would die immediately after birth, I still couldn't make the decision to abort the little life growing inside me. My thoughts and prayers are with you during this time.

[Sheena51985]

wow..as im not a mother, I cant imagine what youre going through, so i can only give you my opinion and support..as someone said before, doctors arent ALWAYS right..miracles DO happen..you wont really know till the baby is born..give it a chance...you might be surprised..as i said, this is just my own personal feelings and we're here for you..good luck with your decision

[carrieandcam]

The Special Child



The Child, yet unborn, spoke with the Father,
"Lord, how will I survive on the world?
I will not be like other children, My
walk may be slower, my speech hard
to understand, I may look different.
What is to become of me?"
The lord replied to the child,
"My precious one, have no fear, I will
give you exceptional Parents, they
will love you because you are special,
not in spite of it. Though your path
through life will be difficult, your
reward will be greater, you have been
blessed with a special ability to love,
and those whose lives you touch will
be blessed because you are special."

Author unknown

[Gymp]

Wow,you're in a tough spot!

You've got one heck of a decision to make and the only advice I can give you is to "Follow your Heart"you're the only one who knows what's right for you and the baby.

My thoughts and prayers are with you.

Gymp

[Heidi Vogelpohl]

Im so very sorry, for the news you have recieved. I know you are in a though position. All I can say is, follow your heart. Only you know what you can handle. Remember to keep your faith within the Lord, and do not ever lose hope or faith. God has a plan, whether we understand it or not. It could jjust be a different road you never dreamed of walking down. Being handed things out of our comfort level. We are beginning that path ourselves, with one of our twins having SB. You are involved in a great support network, and I have to say the friends on this site, have given our family so much hope and faith. Let it be what its suppose to be. The docs are not always correct. What ever you choose, you will not be judged. Again,follow your heart. And may God be with you, your child and family at this time. You are in are thoughts and prayers. If you need to talk, please message me.
Stay Strong
Heidi:sign0013:

[LisaJoy]

Melissa,

I'm so sorry for this news. But I'd like to echo what the others say -- ultrasounds are definitely not infallible, and neither are doctors. If it were me, I would not have an abortion. Please know that I am in prayer for you and your little one.

Lisa

[Dodger67]

My thoughts are with you at this time of great distress. There's just one thing bothering me about the situation: Whats the big deal about the bladder not filling? If the sphincter is slack the urine will simply flow straight through. There's nothing particularly unusual about a bladder that leaks constantly - mine did.

[LisaJoy]

I think Dodger has a point. In fact, this occurred to me earlier when I was away from my computer. Spina bifida can affect the bladder in several ways -- at one end of the spectrum the bladder is stiff and inelastic. Urine stores at high pressure and can't be released without help, and tends to back up into the kidneys. At the other end of the spectrum the bladder can be flaccid -- basically limp, and it won't retain urine at all, but continually leaks.

Since your baby's kidneys appear to be functioning (given the presence of urine in the amniotic fluid), it seems likely that her bladder is flaccid, making the urine simply leak out continually. This is NOT a fatal condition -- there are a wide range of options for managing all types of neurogenic bladder, including this one.

I'm a little concerned about how knowledgeable your ob & the radiology techs are about sb, if these are the people you're currently dealing with. Unless the medical personnel advising you are very experienced and knowledgeable about children with sb, you should take what they are telling you with a grain of salt. If it is at all possible in your circumstances, you really should consult some medical folks who specialize in the treatment of children with sb before making such a drastic decision. If the people currently advising you are knowledgeable specialists with substantial experience treating children with sb, then that changes the picture.

Please hang in there; my thoughts and prayers are with you.

[janjanwhit]

I wouldnt listen to what alnybody else says. Do what you feel you should. People think I am such a strong person for not terminating my baby but I am not. I still have days where I wish I did because I just want it to be over. It just hurts so much. My baby has nothing else wrong with him and if he did I cant say for sure what I would do. Its a horrible decision and only you can make it which is really unfair. The doctors could be wrong, or they could be right. Could you handel it if they are right? Thats what I would consider.

[docshoney]

Go with what you feel is right for you and your family. You will feel guilt either way, so choose which guilt you can live with. I can't even imagine the pain that you must feel in making one of the most/or the most difficult decision of your life. Other people can tell you what they think, doctors can give you what they see as the facts, but only you live your life and can decide if you can handle what is happening. My thoughts are with you.

[bcain]

Sorry for the stress you're in. I remember it well. I agree that no urine in the bladder, is not a big deal. If the kidneys look good(and they can tell by doing measurements), then that's good. My baby has the chiari malformation, but no hydro, but the docs kept an eye on measurements just in case it developed. You need more info, there's a ratio of the ventricle size to the circumference of the head. that our docs kept talking about.(that was more important) But even then our docs(peri-natal neonatologist) said that babies brains are very resilient, and even with severe hydro the intelligence level can still be normal, no guarantee, but that was our docs feeling. I saw a doc at our SB clinic(within a week) who gave me info about the conditions we would be dealing with(braces, cathing, bowel incontent) So that we could have an informed choice. All I can say is get as much info, or decide what you and your family can handle. It's really a personal choice, you have to weigh your health, your reproductive ability, make the best choice for you. I'm not a right to lifer, so I wont put any guilt on you there. It's a hard decision.

[melissa3075]

Thanks for the replys....I still have not made a decision yet - one of the kidneys is definitely enlarged and according to the doctor possibly multidysplastic??, the other kidney is of normal size and shape - everything that was said about the bladder from Dodger and LisaJoy though does make sense - there is urine production or there would be no fluid around the baby. How can that ever be corrected though? I just don't know at what point do you decide that a person's quality of life is not going to be worth living and that the kindest thing to do would be to stop the suffering before it starts. I imagine a life filled with so much uncertainty filled with watching my baby go thru surgery after surgery, none of which ever really makes her whole again, watching her be so scared everytime she has to go through each surgery, wondering if she is going to make it. She has the scoliosis, severe spina bifida, moderate hydro, one non-functioning kidney, a bladder that does not retain urine - she has a laundry list of problems and it so not fair to her or me! I don't know why this has happened to us - I don't drink (at all!!), I don't smoke and never have, I don't do drugs and never have, I go to work everyday and take care of my other two perfectly healthy kids - so why did this happen - what did I do to be put in this situation!?! It's just not fair! I want my baby girl more than anything in this world, but I cannot stand to watch her suffer. I just don't know which decision is the right one to make! My husband thinks that we should terminate (his decision after seeing the MRI photos and hearing the MRI doctor say that she would terminate if it were her in our shoes). After the MRI we went to see the our high risk fetal medicine doctor (at a different hospital) and he checked the fluid around the baby and the bladder again and stated that he would be willing to write up a recommendation to terminate due to the baby's condition being considered lethal. This would allow for a hospital based induction. I just don't know what to do - I am at a fork in the road and dont know which is the right path to go down.........I want this baby so badly and my husband is willing to support whatever decision that I pick................but I just don't know

[Summer25]

Thanks for the replys....I still have not made a decision yet - one of the kidneys is definitely enlarged and according to the doctor possibly multidysplastic??, the other kidney is of normal size and shape - everything that was said about the bladder from Dodger and LisaJoy though does make sense - there is urine production or there would be no fluid around the baby. How can that ever be corrected though? I just don't know at what point do you decide that a person's quality of life is not going to be worth living and that the kindest thing to do would be to stop the suffering before it starts. I imagine a life filled with so much uncertainty filled with watching my baby go thru surgery after surgery, none of which ever really makes her whole again, watching her be so scared everytime she has to go through each surgery, wondering if she is going to make it. She has the scoliosis, severe spina bifida, moderate hydro, one non-functioning kidney, a bladder that does not retain urine - she has a laundry list of problems and it so not fair to her or me! I don't know why this has happened to us - I don't drink (at all!!), I don't smoke and never have, I don't do drugs and never have, I go to work everyday and take care of my other two perfectly healthy kids - so why did this happen - what did I do to be put in this situation!?! It's just not fair! I want my baby girl more than anything in this world, but I cannot stand to watch her suffer. I just don't know which decision is the right one to make! My husband thinks that we should terminate (his decision after seeing the MRI photos and hearing the MRI doctor say that she would terminate if it were her in our shoes). After the MRI we went to see the our high risk fetal medicine doctor (at a different hospital) and he checked the fluid around the baby and the bladder again and stated that he would be willing to write up a recommendation to terminate due to the baby's condition being considered lethal. This would allow for a hospital based induction. I just don't know what to do - I am at a fork in the road and dont know which is the right path to go down.........I want this baby so badly and my husband is willing to support whatever decision that I pick................but I just don't know

First of all, it isn't your fault. You did nothing wrong. It just happens. Second, no one knows how she will be until she is born. You can't listen to doctor's opinions. I know several mothers that they told to abort and didn't. Their kids are no where near where the doctors said they would be. Also, coming from a person that has sb, I know I don't suffer. I have an awesome quality of life even though I have had close to 50 surgeries. Yea, it is is hard, but I wouldn't change anything in my life. Yea, it sucks having at least a surgery a year. I however, have gotten to do some of the most amazing things that if I wasn't disabled I know I wouldn't have been able to do. I know that sounds weird, but it is the truth. I always say I was born like this, so I have no clue what it is like to be "normal" in others eyes. Nor really and truly would I want to know. My surgeries and medical issues are what is normal to me. I however, have a life outside of that. I also have a severe sb at the T10 level. I was in all regular classes 6 months into kindergarten. I graduated high school on time. I was a posterchild for March of Dimes and Easter Seals. I was also the National Ambassador for Shriner's hospital. As a child I did telethon after telethon. I did every sport I could possibly get into. I did every choir I could. I work and drive. No one then or to this day can tell me I am not normal or have an awesome life. Yea, it has been hard. Yea, I have been treated for depression. Yea, I have been in the hospital more times then I can count or even care to remember. Yea, I have almost died several times. Yea, I have lost function and feeling. However, suffering is what you make it. I know I wouldn't trade my life to be normal for anything.

[Gymp]

Hello again Melissa,I'd like to add to my previous post,I too was born with Spina bifida.When I was born my left kidney was a floater (didn't work at all),I had scoliosis too and that was fixed at around 18 yrs of age.The doctors had told my mother I would never walk,I started walking at around age 4.The doctors told Mom I'd never amount to anything and would be dead by the age of 2.Well,I did finish High School and worked for many years as a printer and am at the ripe old age of 52.I have no control of my bladder or bowel and it's not an issue,there are ways of getting those issues under control.

You've done absolutely nothing wrong in your life to become pregnant with a child that has Spina Bifida,it just happens,a numbers game so to speak.

What's normal in life anyhow,life is just plain difficult being disabled or not.To me I'm as normal as anybody else,sure I don't run well and physically can't do what more able bodied people can but I can do some things that they can't do either.I've had tons of surgeries through my life and know no different,to me it was part of my lifes routine.I'm not any worse for wear because of it all and am quite content with life being who I am,in fact I think the Spina Bifida has made me a stronger willed person than others not in my shoes.

The choice you and your husband have to make is a very difficult one,it's between you and him alone.You've gotta weigh in the good and the bad and figure out what's right for both of you plus the baby.Either way you decide it will be a hard journey.

From the bottom of my Heart...
Good Luck
Gymp

[LisaJoy]

Melissa,

Just to second the others -- it is not your fault. S**t happens and unfortunately, it has happened to you and your husband and your baby. Please do not blame yourself (although that is a perfectly normal reaction to have under the circumstances). Nobody really knows what causes SB.

Lifting you up in prayer,

Lisa

[smoop]

Summer-- I hope my daughter has your outlook on life when she's an adult. You're an inspiration!!

~Renee

[Summer25]

Summer-- I hope my daughter has your outlook on life when she's an adult. You're an inspiration!!

~Renee

Aww thanks. I have my mom to thank for that. As a child I couldn't say no even if I wanted to...lol. I think being active and out there in the world as a child helped. Like I said in the earlier post, I did everything I could get into.

[Heidi Vogelpohl]

Just wanted to let you know you are still in our thoughts and prayers. I know tomorrow is a big day for you. Follow your heart, and know we are all here for you. May God be with you , and grant you the strength for your decisions. Hang in there.

Praying for you,
Scott and Heidi

[Sheena51985]

I 2nd that. Just wanted you to know we're thinking of you. Good luck in whatever you choose tomorrow.


~Sheena

[naomi6896]

God will tell your heart what to do!!!!!!!!!!!!!!!!!!!!
many blessings for your future!!!!!

[angel]

I just wanted to add my two cents in. Do what you feel you have to do but let me just add this. You mentioned quality of life. The biggest mistake able bodied people make is thinking that just because you have a disability that your "quality of life is less" nothing could be further from the truth. I could name a hundred people i wouldn't trade places with and they are not disabled. Many people compair using the things they did when they were kids. Well when you are born with a disability it is what you know. When you think of it i don't see how you could picture it without feeling some kind of loss. Like if it were you that were disabled you would feel loss for the abilities that you would miss out on. With us it is nothing like that at all!!! Nothing has been taken from us. We don't feel loss for something we never had. I think it is one of the hardest if not completly impossible for parents to grasp fully. This is what we know and i will tell you being born into it is a hell of a lot easier than if it happened to you later in life after you had learned to walk etc.... Just think about that angle for a minute it may change your definition or at least the way you think about quality of life.

Angel

[Dodger67]

I absolutely agree with Angel.

The only "standard" by which the concept "quality of life" can be guaged is the life that the person concerned is living.
It is in fact totally meaningless to even discuss the QOL of someone other than yourself. Nobody can ever grasp another person's QOL - simply because you cannot live that persons life.

Further every single one of the "insurmountable" issues this baby has is in fact managable/treatable.

She has:
scoliosis - so what? millions of people life full lives with curved spines, this one is definitely not "lethal"

severe spina bifida - what does "severe" mean, if it is myelomenigocele (which is the most severe form) again its far from lethal - at least half the members of this forum have this type, myself included. The location of the lesion largely (but not entirely) determines the paralysis. Mine is at L1 and 2. I am a fulltime wheelchair user. So the inability to walk is also not lethal.

moderate hydro - "moderate" hc sometimes goes away by itself shortly after birth, if it doesn't, the VP shunt was invented in the 1950s, its application and management was pretty much perfected by the early 1970s. Mental retardation only occurs in cases of untreated severe hydrocephalus. This one is also not lethal.

one non-functioning kidney - millions of people live full and happy lives with only one working kidney. Again fails the lethal test.

a bladder that does not retain urine - thats basically true of almost everyone with SB and its totally solvable. I for example have a Mitrofanoff stoma it eliminates the problem completely. So this one is also not lethal.


The only rational conclusion I can reach is that the doctors treating and advising you actually know less than fuck all about SB. They should be charged with gross malpractice for exceeding their competence.

[melissa3075]

Dodger and LisaJoy - I love you both! Thank you for bringing a sense of sanity into my life over these last 3 weeks! I wish that I could hug both of you! I have decided to keep my baby - I just can't give up on her, I love her too much already. Just know that I will continue to need all of you on here to help me through my ups and downs - my emotions are all over the board, I feel like I am on some out of control roller coaster ride - one minute I think all will be okay, and the next my mind fills with terrible images and worst case scenarios that play out over and over in my mind. Just please help to keep me grounded when I start sounding like an irrational lunatic - I am so use to having control over all things in my life AND I suppose that I just need to let go, take things as they come and keep reminding myself to breathe.

[janjanwhit]

You feel how I felt about my baby when I had my scan at 20 weeks. I felt as though I loved him already and It was so hard being told that i should terminate. Some people told me I was cruel to keep him! I am happy with my decison to keep him. Every now and then I wonder what I have gotten into and actually think about wishing I had terminated. I dont actually wish I had, just that its very stressful and I wish this was all over. it just hurts so much sometimes and I want it to stop. Waiting is the worst part. I only have 8 sleeps until I meet my baby boy. I cant wait. I just want to see him and know what we are dealing with. I think once I see him I will love him immediately. Then I will know for sure that I have made the right decision. I hope that this has happened for a reason. I feel like a totally different person and I havent even had him yet! Everything seems more precious. I didnt realise what I had.

[janjanwhit]

Btw I am glad you are keeping baby. I was hoping you would. its just such a big decison I didnt want to influence you in anyway. I think that if my baby doesnt make it at least i will not feel guilty inside. I will know that i did everything i could for him. That gives me some peace inside.

[Barb]

Dodger and LisaJoy - I love you both! Thank you for bringing a sense of sanity into my life over these last 3 weeks! I wish that I could hug both of you! I have decided to keep my baby - I just can't give up on her, I love her too much already. Just know that I will continue to need all of you on here to help me through my ups and downs - my emotions are all over the board, I feel like I am on some out of control roller coaster ride - one minute I think all will be okay, and the next my mind fills with terrible images and worst case scenarios that play out over and over in my mind. Just please help to keep me grounded when I start sounding like an irrational lunatic - I am so use to having control over all things in my life AND I suppose that I just need to let go, take things as they come and keep reminding myself to breathe.
Sorry I missed your posts but we are all here to help you whenever.

I have this to say about prenatal testing:
Carter had 6 ultrasounds, all detected nothing unusual
My AFP test was normal
I had surgery at 21 weeks with him for a ruptured appendix and he was monitored the whole time

Carter was born with a L4 ish myelomenigocele, hydrocephalus, Chairi and all the rest. So, please do not put a significant amount of worry into the prenatal tests. Nothing will be certain until she is born and you will love her so much at that point that nothing else will matter. Look through the albums here :)

[Dodger67]

We will always be just a website away - ready to help in any way we can.
We will also never judge you for your decision, we know you are doing what is right for you.
May I suggest we start looking for the right team of doctors for your baby: to start with you need a neurologist and a urologist, both with plenty experience of SB. The other specialities can wait their turn as needed.

[Dodger67]

May I propose that we close this thread and start new ones in the aproriate sections.
The sun has set on the bad day.
If you look up you'll see a sunrise full of hope and the joy of new life ahead!

[Sheena51985]

If you look up you'll see a sunrise full of hope and the joy of new life ahead!

I like the way you worded that Dodger. It's inspirational in any situation in life!

To Melissa: As Dodger said, we'll always be only a few clicks away anytime you need us. I'm glad you kept the baby, because, as people have said before, doctors ARENT always right. You'll never know exactly what's goin on until she's born. Good luck and we're always here for you!

~Sheena