20 weeks pregnant and just found out

[sabrinap11]

That my little boy has SB. We went for a level 2 u/s because his lateral ventricles were dialated already to 14mm. She didn't give me the exact spine location but said it's from his kidneys to his bladder. I have no idea what that means. Good? Bad? Indifferent? Is that big or small? She did say everything else looked good (besides his misshaped head) and that he doesn't appear to have club foot. I am obviously at a loss right now as to what to do. She mentioned the MOMS trial and I am looking into that. I guess our next step is to meet with a surgeon and ask questions that I am sure he can better answer.

My husband is really taking it hard and thinks I should terminate. I am a researcher by nature so it's my first instinct to research the heck out of something and then make an educated decision. I need some honesty here - I know there is a HUGE variance with mental and physical handicaps but I really need to know what it's like. I need good and bad. I hate it when things are always sugar-coated. As you can imagine, every other online source has been pretty grim. It's nice to see some hope on this board but I know it isn't all roses ya know?

[angel]

Hi,

You are right it isn't all roses BUT it is not a nighmare either. I can imagine your husband is taking it hard. The truth of the matter is (and i am sure you will hear from mom's on here about it) that they can't tell you anything 100% accurate until the baby arrives.
I am 32 years old and have SB Myloemeningocele level L4/L5. I walk with crutches and have for 29 years. I use a wheelchair to do my shopping, housework and for long distances. In my experience SB really isn't that big of a factor in my life. I use my crutches but I can't imagine that being any different than just getting up and walking. It isn't something I think about it isn't something that is a chore it is just what I do. I have done it for so many years it is as natural as breathing. The bladder problems can be a bit frustrating at times but also something one learns to deal with at an early age and you just do what you gotta do.
I am happily married, my husband is not disabled (not that it matters either way but it is a common question people ask me) I have a 12 year old son that has SBO. He has the bladder and bowel problems, and has had 2 surgeries, one for tethered cord and one spinal fusion.
I have been on both sides of this issue. I have been the patient and the parent. Let me tell you that you will suffer more than the child will! I posted the other day about that very subject. It is so much harder to watch your child go through something than it is to actually go through it yourself.
I think a lot of the reason that I didn't have such a hard time with it is due mostly to my mother. She raised me like she did my brother and sister. I wasn't treated differently. I wasn't coddled, pampered or treated "special" because of my SB. I credit her with all that I am today. She watched me struggle, she watched me learn my own way of making it in this world, she watched me overcome everything that was thrown my way. She supported me in everything I wanted to do.
I can't tell you any horror stories because I just don't feel like I have any. I mean yeah surgery sucked when I was a kid but now eventhough i remember 2 of them, I don't remember it being that terriable. I remember the tests and yeah you get scared when you are going through that as a child but you get through it and you cope. I think it has prepaired me for life in a way that I couldn't have possibly been prepaired otherwise. I can adapt to anything with the greatest of ease because it is a skill I have practiced through out my life.
All I can really say is I wouldn't change anything my life has been great.

Angel

[LisaJoy]

Sabrina,

Welcome aboard and first of all, congratulations on your baby -- keep in mind that your child is a child like any other, not just a collection of medical diagnoses. It is very easy in the early days when it is so overwhelming to forget that -- especially when people tend to give out condolences instead of congratulations!

You should definitely check out the MOMS website www.spinabifidamoms.com. There's a lot of good information, including a section on frequently repeated myths/misconceptions about sb. (It has been demonstrated quite conclusively that medical professionals tend to be significantly overly pessimistic about sb and tend to have stronger biases against people with disabilities than the general population has -- I have personally read many articles as a professor of history who studies the history of medicine and disability. I also have sb.)

The other thing you should definitely do before making any major decisions is to consult a pediatric neurosurgeon who has experience treating children with sb.

Your doctor's way of describing the lesion -- from kidneys to bladder -- is very strange and makes me wonder about his/her level of experience diagnosing spina bifida. Normally we speak of vertebral levels, such as "L5 to S2" -- a lesion that includes the bottom lumbar vertebra and the top two sacral vertebrae. The sacral vertebrae are the lowest on the spine. Generally speaking, the lower the lesion the better in terms of likelihood of walking.

So here are the cut & dried basics: 80% of kids with sb have normal or above normal intelligence; most of the rest are not severely impaired intellectually. Most can achieve social continence of the bladder & bowels -- meaning the bladder & bowels don't function normally, but can be medically managed to allow the person to function in society. Whether or not a person with sb walks depends on a lot of factors, but there are other ways of achieving mobility. If you read through the various threads, you will quickly learn that mobility issues are of minor significance compared to the challenge of managing incontinence.

The other thing you will learn is that people with SB can have excellent quality of life. A lot of it depends on the parents -- giving your child plenty of opportunities to develop socially, intellectually, and physically; having high expectations of your child; treating your child just like any other child in terms of discipline and participation in family life. Your child will only be as "disabled" as you raise him to be.

I encourage you to read through this forum. Its great strength -- and its distinction from other forums -- is that it mixes parents of kids with sb with adults who actually live with sb. In the adult section, we even talk a lot about the impact of sb on sexuality and relationships.

I think this forum gives a really balanced picture, overall. I hope that after reading around and asking whatever questions you want to ask, you will choose to give your son a chance.

I'm Lisa -- 45, a closed form of sb with some other stuff, neurogenic bladder, walk with one crutch and brace, have a PhD and teach history at the university level.

[janjanwhit]

Hello. I found out at my 20 week scan that my now 10 week old son had sb. They also told me from the kidneys. That normally means from about L3. My baby boy is L3-5. He has one clubbed foot and no shunt yet. His ventricles were 12mm at the 20 week scan I think. He has full movement and good tone to his ankles. Just no movement in feet and toes. He is a beautiful little baby. Nothing like what I had imagined! Have a look at my photos and posts about it. I can understand wanting to terminate. It hurts so much sometimes you just want it to be over. It gets A LOT better once baby is born!

[Dodger67]

Hi Sabrina
Welcome! :happy065:
I agree with the others that the competence of the doctor who diagnosed your baby's condition is doubtful. Getting a new doc is a very good idea and the MOMS program is a good place to find one.

[cadon's mum]

Hi sabrina, my son has s/b and hydro he has a shunt, he is 13 weeks old now and is such a joy. I am so glad that you are willing to do some research first you have come to the right place. no-one can tell you exactly how severe your son's sb will be until he is born but i was told EXACTLY the same thing as you that my son looked o.k apart from his chiari & dilated ventricles.( he only has a very slight club foot.) Cadon is just like any other baby, he just needs a liitle more of my time & attention. I know how your feeling right now, it's the uncertainty of everything, but having a child with s/b is really not all that bad.!

[Sheena51985]

Hi and welcome! Also, congrats on the pregnancy! A baby is always a miracle to the world, no matter the circumstances.

By the way, I'm Sheena, 23 years old (24 on May 19th), and I've had SB and Hydrocephalus since birth. I also have a shunt as well and I walk with AFO's on both legs. I have incontinence issues, but theyre pretty much under control, so only those close to me know the issues even exist.

I gotta say that, like the others have said, and as you know, SB isnt a walk in the park. But, it's also not the end of the world either. Yes, we all have our challenges, but we've all made it through somehow and, for that, we're all just that much stronger. "What doesn't kill you only makes you stronger." That quote is SO true!

Termination, in my opinion, is a cop-out. And I don't mean that in any way to offend anyone. But I think the parents of a child with SB are chosen for a reason. God (if you're religious) apparently thinks you're strong enough to be the parents of the baby. That should count for something.

I guess what I'm trying to say with all this rambling is this..You're stronger than you think and you never know exactly what a situation is like and just how much you can handle until you're in that situation.

Good luck with whatever decision you make and we're always here when you need us!


~Sheena

[sabrinap11]

Thanks everyone for the feedback. I did talk to the doctor again today and asked her where on the spine the defect was. She told me it was from L1 to mid S range but couldn't see the tail end exactly because the baby was being difficult. She said she did see that it fused back together at the end though. Her estimate is that it's 7-8 verdabrae. She said she didn't give me those terms yesterday because (and she is right) I wouldn't of known what it meant. It makes more sense to a 'laymen' to talk in terms of organs because I at least know what they are, where they are, etc.

We are going to consult the surgeon before making our final decision. Our doc is going to try to expedite that meeting so we can get answers sooner rather than later. My husband just doesn't think he can handle it and I don't want this to end our marriage and ruin our family and life together. I hope the surgeon paints a better picture for us!

[LisaJoy]

Sabrina,

Here are a couple of blogs for you & hubby to check out:

http://ourlittlegibblet.blogspot.com/
http://babyboybush.blogspot.com/

I mention them in particular because the dads blog just as much or more than the moms. In both cases, the blogs were started soon after fetal diagnosis.

Thought they might help.

You and your husband will be in my thoughts and prayers.

Lisa

[Dodger67]

Good to see that the misunderstanding about spinal terminology has been cleared up.
L1 is where my lesion starts so one can expect roughly comparable effects. Caveat: Ultrasound diagnosis at ~20 weeks is not very accurate and no two people even with "identical" lesions will have the same effects.

[janjanwhit]

If you are basing your decision on what the doctor says and hoping that he will give a postive prognosis I can tell you now that it wont happen. They will always give you the worst prognosis. They said my baby would be paralysed from the waist down and mentally retarded, and probably pre term. he was 39 weeks, only paralysed feet and toes and has all the normal milestones for a baby his age. just warning you.

[sabrinap11]

Thanks everyone for the responses. We have an appt with the neurosurgeon tomorrow morning and I pray it goes well. I honestly don't know what to expect but I hope for good things. I need my husband to get some hope. I think he has completely written this baby off and that makes me so sad because I just can't do that. I love this little guy!

[Barb]

You are in a really tough place and I don't envy you. I have said numerous times that I am glad we were 'surprised' with this.

Here is my family blog: http://elementaryspirits.com You will find a very boring, normal family blog. Basically that is because we are just that. Carter is 10 and we have had some real challenges, a lot of surgeries and trials but I would not trade it for anything. It has made us the family we are today. We have a lot of fun too. We ski as a family, swim, bike ride and everything else that 'normal' families do. But my husband and I have had some very rough patches, anyone that tells you this is not rough on a marriage is either very lucky, or not married :p

I agree with the statement above, you are hoping for a positive outlook from the docs, I seriously doubt you will get it. They will tell you all the horror stories. They play the CYA game which you have to understand in todays society. Have your DH read this forum. Look through all the pics. Our kids are just that, normal kids that have some medical issues.

You have already said that you love this little guy, if you had not known in utero would you terminate him at birth? I just have a very hard time with DR's offering termination at 20 weeks when you are already so in love with the little person inside. Would you terminate if he were blind, or had diabetes? Both could be just as devasting, if not worse than this. I am not trying to make the decision harder on you or judge whichever way you go but I really think you need to consider what you would do if you were surprised at birth by this. My SIL called and told me in the hospital right after Carter was born "you don't have to take him home, you know?". My response: "Of course I do. I love him."

[janjanwhit]

I can tell you right now what they will say. The doctors will mention mental retardation/ learning problems, being in a wheel chair, bladder and bowel incontience and many many operations. They will also tell you that all these things will happen and be very severe. If you think they will give you positive news I would give up that dream now and prepare yourself. However, they are very rarely correct. Its just that if it does happen they are covered. My husband wanted to terminate. He told me that if I had this baby he wouldnt love it and couldnt look at it. I decided to protect my baby. Even at the expense of my marriage. I knew I would never forgive myself for murdering my baby boy. Luckily my husband quickly changed his mind about it when i told him what was happening. From the moment Fergus was born Adam loved him. Looked at him like he was the most beautiful thing he had ever seen. Nobody ever regrets having a baby, but many regret termination.

[Leilani]

Good Morning, I have read all previous posts and just want to say have faith. My daughter was born with spina bifida 14 years ago. I found out when I was only 3 months pregnant through ultrasound. I was told she would not be able to walk and may not lead a very productive life. I was also told at one point she would have down syndrome. I really was given the worst of her condition. I decided to keep my baby and felt that if God is giving her to me there is a purpose for her in this life and I will take care of her the best way I could. A baby is a blessing and I was not going to terminate my pregnancy. The doctors advised me to take high doses of Folic Acid and eat lots of greens. I did and Leilani was born pretty healthy. Leilani was born with mylomeningocele and Hydracephalus. Trying to cut a long story short Leilani can walk without any support or crutches, she runs, dances, looking at her you would never think in a million years she was born with spina bifida. Leilani does have two VP shunts and has had 4 revisions on her right shunt. The last revision of her right shunt was when she was about 5 years old. We have been so blessed. Leilani has been without a revision for about 9 years. Of course we know that one day she may need another revision, but we are so thankful that she has done so well for so long. She is also very very smart, and was NOT born with Down Syndrome. Leilani is an Honor Student currently in Middle School. Come September she will be in high school and we are all so very proud of her. Everyone's condition is different and every situation is different. We did go through a whole lot of in and out of the hospital when she was younger, but there is light at the end of the tunnel and I thank God everyday I chose to keep my beautiful little Girl....Best of Luck to your Family....Lisa

[LisaJoy]

Thank you for sharing your story about Leilani -- I'm sure it will be an encouragement to others.

[cadon's mum]

I agree with all the comments above, although one specialist i seen in the u.k was really positive when the others hadn't been, he told me that my son would have bowel/bladder problems and might be in a wheelchair but as long as i could deal with these issues that cadon would have normal quality of life.I am so glad that i listened to him. Deciding to terminate is a really tough decision especially when only one parent is sure about it. I hope that you can make a decision that is right for all of your family.