Baby boy due February 2009

[janjanwhit]

Hello. I am 25 and my husband is 24. We have a 3 year old son. I have just found out that my unborn son has SB. All i know so far is that it is low in his spine. I have just gone 20 weeks. This is really confusing. In my ultrasound he was kicking his little legs. I am having furthur scans tomorrrow and an appointment with a specialist. I want to keep him because i love him and can feel him kicking inside me. I also want to keep him safe from social rejection and physical pain. I hate taking my son to get his immunisations! I dont know what to do. Any advice will be appreciated. If anybody is in the same boat as me it would be nice to chat together. I would also like to know what to expect when i give birth and what happens in hospital and when i take him home. Because he is male i am worried that if he has sexual dysfunction that it may effect his confidence and outlook on life. I am very confused.

[Dodger67]

Hello and Welcome :happy065:
You are among friends here. All of us are affected in some way by SB.

Take some time to read all the topics. Many of your questions have been answered here before. Feel free to add your thoughts and questions to any of the existing topics and also to start your own topics if you wish.

Please tell us your name and where you live.

[angel]

Hi,

I can understand where you are confused and it is fine to feel that way i am sure most parents felt the same way.

I have SB at a low level and i am 31 years old. I am female but i just wanted to tell you that it isn't quite the nightmare you may have in your mind. I don't know if you ever heard of it before now. My family had never heard of it either and were scared to death. You will find on here a lot of parents that will tell you thier stories and all the great things about thier kids. You will meet a lot of adults that will also tell you the same.

A little about me i can share with you is my life has been great. I fit in when i was a kid for the most part. I went to school (not a special school) I had lots of friends. Jr. High was a little hard for me but i think a lot of that was my fault because of the way i felt about myself and the way i represented myself to others. When i got to highschool all that changed and i had the time of my life. I had friends, i went to parties, i had boyfriends, and thinking back it was so awesome i would go through highschool 10 times over if i could.

Now that i am grown up i am married (my husband is able bodied) I have my own business (not an at home business) my husband is extreamly successful in his career. We have 2 boys, he had one child and i had one child before we were married and they are both 12 years old. My son has Spina Bifida Occulta. It is the least severe form of Spina Bifida (mine is the most severe) no one would ever know he had it if he didn't tell them. He has had 3 surgeries but walks around and deals with the issues (some the same as me) as they come and it just isnt' a big deal.

I just wanted you to see that there is plenty of opertunity out there for your child. THere is nothing that says he will be socially rejected. Pain well there will be a little of that with surgery and stuff but you can rest assured that your child will get through it just fine. If you don't dwell on it neither will your child. My best advice to you is treat him like you would if he didn't have a disability!! Expect the same from this new baby as you would your other child. Don't dwell on the negative ever there will be times when things get tough but just remember you will all get through it and then you move on.

I had my first surgery when i was 6 days old. My second when i was in first grade, my thrid when i was 8 years old and my last when i had my son (c section) The only of those i remember really is when i was 8 years old. The first 2 i dont remember at all. I didn't go through a lot of pain. My son who i mentioned has a least severe version of SB has gone through more pain than i have but it isn't anything he didn't rise above and when it was over it was over. We moved on. He had a spinal fusion almost 2 years ago. It was hard for him it was painful and it was scary. He was 10 years old and he remembers all of it. He got through it and after he got out of the hospital he was ready to put it all behind him and move on with his life. He did just that!! Now you will ocasionally hear him say that sucked glad it is over. It isn't a horrible experience in his memory and he and i both refuse to live in the past.

If you have questions feel free to ask them any of us will be happy to answer you to the best of our ability.

I hope you find some comfort here among friends who have been through it (on both sides the parents and the patients and in my case i have been both).

Lots of hugs,
Angel

[LisaJoy]

Just remember -- pain and social rejection are normal parts of the human condition. Being born free of disability is no guarantee of a life free from suffering. Being born free of disability is no guarantee that you'll remain that way.

By the way -- I am a 44-yr-old woman with sb. I'm a college professor with a PhD. I own a home and live independently. I've experienced my fair share of pain and social rejection in life, but I also would not trade my life for anything. SB to a certain extent has shaped who I am, but it does not define me.

Keep us posted and ask anything -- yes, anything -- you want or need to ask.

Lisa

[Barb]

Just wanted to say hi and welcome. You are in a very rough place right now and I am sorry you are going through this. I just got off the phone with Holly (one of our admins) and we were talking about sb. It is so interesting for me to talk to her about this as the only person she knows with sb is my son so she has a completely different perspective. We were talking about the lack of quality information there is on the web about spina bifida and how I think that when we added the albums, it was a very important thing for new parents. Take some time to look through the albums and you will see that people with sb are far more like everyone else than you may have imagined. Poke through my personal blog in my signature and you will see how despite the medical challenges we have, our family is pretty normal. SB is certainly not a bed of roses but the thornes give way to some beautiful flowers :) (oh my I am so poetic today)

[joybell322]

Welcome from me too! Well do I remember those feelings when first finding out! I have 3 girls, my youngest at 6 has SB. My advice to you is the same as to all who are just finding out - Read up on it. Know what to expect and what to ask doctors. My Lizzie with SB is outgoing, fun, and beautiful. We have our share of difficulties, but I can't imagine life without her. I remember her kicking me while yet unborn. Enjoy every moment possible!

[Bigwilli]

Hi Jan,

Our daughter is 3 months old and has SB and is doing great. Like you we were devastated at this discovery but the mind has a way have playing out the worst scenerios. We have had some storm but overall things are really well and we fell blessed. Feel free to ask me any questions and I'll try to answer to best of my ability

[Reann]

hi, I under stand how u feel to I ave 4 kids Ashley is 2, as. Spina bifida , talipies and discolated hips and she as a shunt , at doctors ave 2 tell u the worse , I rang asbah and ave a adviser who helps , if u would like any one 2 chat 2 I wld love 2 just email me or ring asbah. U was in hospital 4, three week but when u get in to specail care u proberly realize how lucky u are, there's was alot of sick babies there and like I got told these spina bifida babys are strong, ashley is as cheeky as my other kids , I also had another little one after her and I ave 2 boys ,

[Dodger67]

:33a:Can you repeat that in English :sign0009:

[ShandiSF]

we kind of sound like we're in the same boat. you seem more brave than i am. i feel very angry with myself for being weak, but find it hard to think positive right now. i hope you get some of your questions answered at your appointments. I wish you good luck with everything.

[janjanwhit]

At what week would i exepct to deliever via c section
?

[ZoesMom]

I was delivered at 37 weeks but thats because Zoes hydro was getting worse each week. They were going to do it at 35 but they wanted to make sure her lungs were developed. So unless your baby has hydro and its getting worse at the end they will probably do it around 38 or 39 weeks.

[XoBLoNDiE85]

Yea like Zoes mom said 38-39 weeks.....I delivered Hannah via C section as well at 38 weeks and 5 days to be exact. I dont know if this is your first c section or not but if it is and you are nervous don't be. I had my first to girls natural, no drugs or anything so fast so easy so i was terrifiedof hannahs birth. Its ssooooooo easy! The recovery is a bit tougher than the other way but nothing to fret about! Keep us posted! By the way I'm Laura :dance2:

[janjanwhit]

My other son was born naturally. I have another question.... I plan on breastfeeding. How will i beable to do this if i am discharged before my baby? Was anybody else on here discharged before their baby was and by how long?

[ZoesMom]

I was discharged at day 3 and Zoe came out on day 12. You just pump and take it to the nicu cause u will not be able to breastfeed for a few days atleast. Its going to be one of the hardest things you ever do but its really worth it if your serious about breastfeeding. Its hard because it takes alot out of ou more so than actually doing it and once your baby gets out of the nicu they will still want the bottle. they didnt even feed zoe until day 3 or so because of al the surgeries the go through they just give them nutreints through IV until they think that the babies can handle food.

[cutie patooties mom]

My experience was close to Zoesmom. Gabi stayed 16 days, I stayed 3. But they fed her my pumped milk and I was able to nurse in the nicu during my visits. She had no problem with the change from bottle to breast.

I was just telling Gabi the story about how a nurse told me I probably saved Gabi's life by breastfeeding. Gabi had subglottic stenosis (teeny tiny airway.) The nurse said that if she would have gotten a cold that it would have blocked her airflow. She said by breastfeeding, I had kept her healthy.

God Bless,
Bronwyn

[janjanwhit]

I really hate breastfeeding but I really want to do it. It feels as though its the only thing that i have control of that I can do to help my baby. I took my folic acid for 7 months before I got pregnant. So i have a clear conscience that I have done everything in my babys interests.

[XoBLoNDiE85]

Just like the rest I was discharged on day 3.....i had the choice to go home or stay and i chose go home (2 other girls at home ages 2 and 5) at night and leave home at 4am. Hannah came home on day 6. I too pumped and brought it to the NICU and nursed while i was there (6am-4pm) I pumped every 3 hours round the clock. We set alarms at night to stay on top of it. I pumped it my husband bagged it haha. I will tell you be careful with those hospital pumps tho. I pumped so much i broke vessels and pumped pure blood one time (scared me too death) its cause they r SO strong! Anyway, Hannah never had a prob switching back and forth, it was a fear i had though cause my older 2 refused the bottle!!! She did well with it. Its a scary time but amazing at the same time.....they are little troopers!!! This site helped us out so much an I hope it does you too!!

[janjanwhit]

Thank you all for your replies. This website is so positive. I found one lady in Nz with a sb baby, but she died at birth. Its a bit depressing hearing things like that. I actually hadnt thought about that being a possibility. I cant wait until February so I know where I stand.

[LisaJoy]

Would you mind telling us where you are? What state if US, what country otherwise. My apologies if you've already done this and I overlooked it. You can also set your location in your profile. It is helpful when sharing experiences because things like typical hospital stays tend to vary according to the health system that you operate within.

[janjanwhit]

New Zealand

[janjanwhit]

Just went and saw another specialist. They said that because my baby has club foot he prob has bad nerve damage in his leg. They also said he has Charaii thingee. Basically they said dont get your hopes up and lots of babies like this die after they are born, lots are still born as well. And its more likely that i will go into pre term labour. They said that i may be asked if i dont want medical intervention if all goes badly. And that when he is born his head will be all big and swollen. If he does live that i will spend a massive amount of time in hospital. this is so depressing.

[dahliafaolan]

Honey, I realize this all seems so scary, but one thing to keep in mind is that doctors don't know everything. Tests can be wrong. And even if the tests are correct, there are plenty of people with Spina Bifida and Arnold Charii living normal, productive lives. Club feet can be easily prepared. If you look around the site, you'll find quite a few members that do indeed have Arnold Charii and hydrocephalus. And time spent in the hospital is not necessarily the traumatic experience you might believe it to be. It all depends on the hospitals. I myself spent most of my childhood in and out of our local Children's Hospital. I'm 23 now, a college graduate with a great boyfriend, and over the years I've spent every holiday there is in the hospital. I've had 42 hospital stays over the years and I can only remember maybe one or two that I would consider bad. The important part is to keep a positive attitude and don't be afraid to laugh at yourself and the situation, even if it's in bad taste. That old saying that laughter is the best medicine really is true.

[janjanwhit]

I keep worrying that I have made the wong decision in keeping my baby which makes me feel evil. The doctor said there are more really bad cases then good and that the bad cases dont go on the internet to talk about it because it hurts too much. or that they are blind and cant talk and express how they feel. I cant wait until this is over. this is just too much at times.

[smoop]

I'm so sorry to hear that your doctors are so darn pessimistic! Let me encourage you that we were told my 3 year old daughter would have clubbed feet and they were wrong! I am so grateful that we met with our Neurosurgeon to discuss what we could expect. She has spina bifida herself--and told me not to get hung up on what the perinatologists were telling us because we wouldn't know for sure until my child was born.

I was also told that my daughter's lesion was L1-2 and they were wrong about that too. She's actually mid to low lumbar (L3-L5ish).

As you can see from my own experience-- doctors are often wrong. And you had mentioned breastfeeding in one of your earlier posts. For us it went extremely well. In fact, she loved it so much that she refused a bottle. It was a sacrafice that I was willing to make (being tied down to her for a year) but well worth it.

Hang in there.. I know it's hard. Just wait and see what happens and don't put too much weight on what you're being told right now by specialists.

[LisaJoy]

I've read a good bit of the medical literature on sb, and the claims that there are more "bad" cases than good and lots of deaths and stillbirths are simply not supported by any existing research. It is, however, very well documented that physicians are overly pessimistic about sb and that what they consider "bad" and "good" cases usually do not correspond with what parents and people with sb think. They tend to have a very low tolerance for any level of disability and a very low threshold for what they consider "bad." In general, information given to expectant parents about sb is so bad (as in inaccurate and overly pessimistic) that the docs who do fetal surgery at Vanderbilt have written an article aimed at other doctors called "Tell the Truth About Spina Bifida."

It is important to have a realistic understanding of the challenges you face, but try to tune out some of the doom & gloom. (I know, it is easier said than done). Hang in there; we are here for you!

Lisa

[janjanwhit]

I used to want him to beable to walk. I think whats important to me is that he has full mental function and is able to live an independant and happy life. they make it sound as though i have done the wrong thing keeping him and that he is going to be so disabled. That he will effect our family negatively with all the attention he will need. its past the point of termination here in nz so i dont know why they would tell me things like this. they have also told me that if it looks to bad we can refuse medical care for him.

[LisaJoy]

If you didn't already read this thread, you might want to take a look at it.

http://www.spinabifidaconnection.com/showthread.php?t=492

On the second page I have a couple of posts giving article links; the first one is a longer article that references the "Tell the Truth About Spina Bifida" article; the second link is shorter and is well worth a quick read.

I will try to find a link to a free copy of the full text of the "Tell the Truth" article.

[LisaJoy]

I don't think the full text of "Tell the Truth About Spina Bifida" is available without a journal subscription. Here is the citation:

Bruner & Tulipan, "Tell the Truth About Spina Bifida," Ultrasound in Obstetrics and Gynecology Nov 2004 Vol. 24, Issue 6, pp. 595-596.

This is an international journal, so perhaps you can get access to it through your local library.

[ljtolboe]

Hello. I am 25 and my husband is 24. We have a 3 year old son. I have just found out that my unborn son has SB. All i know so far is that it is low in his spine. I have just gone 20 weeks. This is really confusing. In my ultrasound he was kicking his little legs. I am having furthur scans tomorrrow and an appointment with a specialist. I want to keep him because i love him and can feel him kicking inside me. I also want to keep him safe from social rejection and physical pain. I hate taking my son to get his immunisations! I dont know what to do. Any advice will be appreciated. If anybody is in the same boat as me it would be nice to chat together. I would also like to know what to expect when i give birth and what happens in hospital and when i take him home. Because he is male i am worried that if he has sexual dysfunction that it may effect his confidence and outlook on life. I am very confused.


Hi, my son is now 17 months old and has spina bifida. He is such a sweet little boy. I had that same experience as you did, seeing your child kick his little legs on the ultrasound. He moves his legs now. His defect is L5 S1. He is starting to stand up on things. He can't walk yet but he is seeing a physical therapist weekly and is doing well with that. He crawls everywhere and is doing great. I was really scared too when I was pregnant. I was afraid of the unknown, but now that he is here... it is easier than I thought. I have learned so much. When he was born, I had to catheterize him (putting a catheter in his penis to drain urine out of his bladder). He is now urinating on his own and we haven't had to catheterize him in over 6 months.

Just don't worry. These children are so special and they are so precious. I have a 4 year old and he loves our SB baby. He sees 6 doctors but they are all good to him and he is well loved. You will grow to love this child more than you ever dreamed. If you need to talk, please write me on here. I would love to chat with you!

[angel]

I keep worrying that I have made the wong decision in keeping my baby which makes me feel evil. The doctor said there are more really bad cases then good and that the bad cases dont go on the internet to talk about it because it hurts too much. or that they are blind and cant talk and express how they feel. I cant wait until this is over. this is just too much at times.

I think that is the most rediculious thing i have ever heard. Some do have pretty bad problems. MOST of the time the doctors are WAY off espically in what they predict before the baby is born. It is not a laughing matter but it is almost laughable at some of the things they come up with!!!!!

Angel

[angel]

I used to want him to beable to walk. I think whats important to me is that he has full mental function and is able to live an independant and happy life. they make it sound as though i have done the wrong thing keeping him and that he is going to be so disabled. That he will effect our family negatively with all the attention he will need. its past the point of termination here in nz so i dont know why they would tell me things like this. they have also told me that if it looks to bad we can refuse medical care for him.

sorry guys i have been out of town for several days and i am playing catch up. If the child is like most of us on here with SB there is no reason he or she shouldn't be able to live a full and independent life or at least a life with minimal help. Most of that is going to be determined by the way you raise him. Most of us that do live independantly will say that is the number one factor in how his life will turn out. Raise him like you would any other baby not as a child with a disability!!!! That will be the biggest factor in how he lives his adult life!!

Angel

[janjanwhit]

Just gotten back from my scan. It went really well. 15mm of fluid on his brain which is the same as his last scan. They estimate his lesion to be around L3. Still moving his legs well. He is 5 pound 9 ounces atm. Thats on the bigger side of average. They said I dont need anymore scans unless I want them. My c section is booked for the 18th of February.

[ZoesMom]

Are you f-ing kidding me that they aret going to do more ultrasounds! I had ultrasounds every week at the last month of my pregnancy with zoe. even though things look good now if they are going to get bad they will at the very end. Zoe's fluid levels were doing awesome until the last two or three weeks they sky rocketed. thats why they decided to do the c-section at 37 weeks. they were going to do it at 35 weeks cause her fluid was getting so bad but they wanted to give her two more weeks to let her lungs develope and to get just that much bigger cause its easier for the docs to operate the bigger they are.

[janjanwhit]

They said that the fluid wont increase much if at all. Maybe because his lesion is closed?

[ZoesMom]

The fluid building up is because of the spine being pulled down and closing where it drains into the spine itself. They can't say that its not going to increase. They dont know that! Because if they really have hydro the fluid is going to keep building until the shunt is placed. The fluid is constantly being produced. And I say all this cause my docs thought the same thing. They told me Zoe's fluid wouldnt keep building like that at the end. And sure enough it built faster at the end.

[janjanwhit]

I think his cele size is increasing rather then the fluid in his brain.

[ZoesMom]

cele? what is that supposed to mean?

[janjanwhit]

His lesion is covered with a blister type thing. Its called a cele I think. The excess cerebal fluid is going into that. Its increasing slowly in size which is why the fluid in his head has remained constant. I only hope that it continues like this. I know his condition could change at any time.

[ZoesMom]

Well then i would think that just from common sense that once the lession is closed and the blister is pushed into the skin that the ventricles would start to obtain more fluid cause the blister would have no room to push out with the fluid. i dont know that would just be my common sense.

[jefwan]

First, a "cele" is a lot like a blister. These are fluid filled sacs that can develop anywhere in the body. The full name is "hydrocele" because the fluid looks like water. Usually they are named for where they are, then hydrocele. An example would be the spinal hydroceles people with tethered cord sometimes get. It sounds like your baby has one of these. They can get bigger, or they can do as the other poster said, and cause spinal fluid to stop circulating, causing it to back up into the ventricles. I would "insist" on further ultrasounds if I were in your shoes.
My daughter has SB, in the lower lumbar, L4-L5. She is confined to a wheelchair now, but walked when she was younger and lighter. We did not even have an ultrasound when I was pregnant because all my prenatal tests were normal, and my doctor only did them for abnormals. We sure got a surprise in the delivery room! We didn't even know what SB was then!
Now we are old hands. You will have to get used to being at the hospital. You'll have to learn the difference between a bad cold and shunt failure, how club foot is repaired, and the signs of a tethered cord. All of that is here and elsewhere on the web. And now you have all of us to help you, too!
Please don't be nervous about talking to doctors, ANY doctors! I have gone toe-to-toe with pediatric neurosurgeons over my daughter's care. Remember, when all is said and done, the big difference between us and them is just a few years of college, and half of them graduated in the bottom of their classes! I always go in with some research in hand, and always ask "why" over and over. Why does she have to have this surgery? Is there an alternative? What are the benefits/issues? And if you need to, write it down.
Lastly, as has been said over and over, the doctors are obligated to give you the worst case. My kiddo had a club foot repaired. It was far from the end of the world. She can't walk, and so what? I can't knit! Everybody has something he or she can't do. Your baby will be what he needs to be which is your sweet baby, and just wonderful and perfect in your eyes! Hang in there! And let us help!

[janjanwhit]

Not long to go now. Infact this time next week I will be thinking its only 2 more sleeps... Really scared now. I just cant wait to get it over with. I am terrified of having a c section. I know thats stupid and many women choose to have one because its a lot easier. I just find the idea of being awake during surgery to be scary. I could ask for a general but then I would miss the birth and if anything were to happen to him I would never forgive myself. I have a fear that he wont cry when he is born and he might die. I am also scared because I wont beable to see him until I can be moved, thats usually 24 hours.I dont like the idea of being so far away from him. I worry about such a tiny little baby going to have such a big op. I know I am being irrational, I just needed to get all this out. Having a lot of trouble sleeping as its getting closer. I am just so very stressed.

[rach378]

janjanwit, please dont stress your-self out.
My parents didnt find out that i had SB untill i was born, they told them i would never walk. So they never encouraged me, when my sister started to walk i copied her. i was about 24 months old. i have L4 missing, i walk, well in some pain, but i do still walk. i have given birth to 2 9lb 3oz babies.
PLEASE PLEASE never give up on your little boy, let me know how you both are when you come out of hosptal.

Rachel XXXX

[LisaJoy]

Jannah, I've been thinking about you, knowing your time is close. There is NOTHING irrational about any of what you're feeling. On the contrary, you are being perfectly rational. Please don't be so hard on yourself! Never having been in your shoes, the only thing I can suggest is for you to spend some extra special time with your other little boy this week to help take your mind off things. And maybe try to consciously focus on the baby who is coming -- a baby just like any other. Try to think of all the ways he will be just like any other baby, in spite of his medical problems. After all, you aren't giving birth to a diagnosis -- you are giving birth to a precious human being. And this is as much of a "blessed event" as the birth of any child! I can't wait to congratulate you on his arrival -- it will be something to celebrate!

[JanetS]

Hello everyone, and thank you for contributing all of your experiences and insights to this website. My name is Janet and my best friend's unborn son was just diagnosed with SB (she's 20 weeks along). I'm still familiarizing myself with the terminology, but he has an opening in the thoracic area which they are describing as his lower back. I am trying to keep her from driving herself crazy and spending endless hours online imagining the worst case scenario by trying to screen out information that's not going to help her and her family get prepared, but I'm beginning to think that this might be a safe place to send her as everyone on here seems so positive and willing to help. She saw a specialist today in Rochester, NY and has been referred to a doctor in Philadelphia who is performing experimental in utero surgeries on children diagnosed with SB. I am trying to find out as much information as I can for her about the doctor, the trial and anything that we might be able to do to assist her in getting into the program. Does anyone on here know about the trial she's being referred to? What is the standard operating procedure for this kind of thing? She just had an amnio to rule out an chromosonal defects, but if anyone has information beyond that, I would really appreciate it. I'm in North Carolina and feel so useless as I can't even be with her to hug her and tell her that everything will be alright. Any help or suggestions you can offer would mean the world. Thank you with all my heart, J

[LisaJoy]

Janet,

You have come to the right place and you can certainly send your friend to us.

In utero surgery for sb is not standard procedure, although it has been done now for 7 or 8 years. Two docs at Vanderbilt pioneered the procedure -- after doing it for a few years it was decided to do a controlled clinical trial to determine if fetal surgery is really more effective than surgery immediately after birth (the latter has been standard procedure since the 1960s). There are three locations for the trial -- Philly, Vanderbilt (Nashville), and San Francisco. The surgeons and parents will obviously have to know who is getting surgery when, so the "blind" part of the trial will be conducted by a
4th institution. They will get data on all the infants but will not know who was operated on before birth and who was operated on after. The goal of the trial is to determine whether the risks of fetal surgery are outweighed by the benefits. Fetal surgery is obviously a lot more risky than surgery after birth (for both the fetus & the mother). The Nashville docs pre-trial data suggested that in-utero surgery didn't necessarily result in better ambulation but, very much to their surprise, seemed to result in a lower incidence of hydrocephalus. The clinical trial will help to determine if that observation holds up across a larger number of surgeries at multiple locations and if fetal surgery has other benefits over traditional surgery.

The website for the clinical trial is www.spinabifidamoms.com.

A couple of key things for your friend to know -- pre-natal diagnosis of the level of the defect and the severity of the defect is not an exact science and doctors (understandably) tend to give a worst case scenario. The worst case scenario doesn't usually happen (although it is important to understand that there can be bad outcomes, they are rare). The other is that most SB babies do just fine with surgery performed right after birth. If she ends up going for screening at Philly, she will have the advantage of state-of-the-art testing and I guarantee she will come out of it with a very clear understanding of the issues involved, even if she ends up not undergoing the surgery. The clinical trial has rigorous protocol for informed consent and the screening process involves clinical ethicists as well as medical personnel.

If she does not end up going to Philly, she should seek out doctors who have significant experience with treating children with spina bifida in order to get accurate information.

That's (more than) enough to start with. BTW, I am Lisa -- 44, lipomyelomeningocele (a type of sb), college history professor. (I study history of medicine & disability history and have heard the Vandy guys speak and have read a lot of their stuff).

[janjanwhit]

I thought the thorasic area was quite high?

[LisaJoy]

Thoracic is a higher lesion, but of course ultrasounds aren't always accurate at predicting the level of the lesion.

[JanetS]

Lisa, thank you so much for all of the information and while I think we've already past the "worst case scenario" phase with his diagnosis, I'm glad to know that things are not as dire as they seem. I will certainly direct Diane here, and am glad to know that there are so many caring supportive people out there who can give her the unique perspective of having survived this or have children who have survived this and went on to flourish in countless different ways. I feel so useless to her right now and hope that you will all bear with me as I try and educate myself to better support her and her family throughout this process. Thanks again, and I look forward to talking to you all more.

Fondly, J

[LisaJoy]

"bearing with" each other is what we are all about! We look forward to hearing more from you & Diane

[janjanwhit]

Hello. Just letting everybody know that I am packing up today and going to Hamilton tomorrow. I am having my c section Wednesday but my husband would feel more comfortable if we are closer to the hospital before then - just in case. Still getting lots of movements so I guess hes still ok in there. I am a bit too hot and fat but otherwise ok. I dont think I could stretch anymore!

[angel]

Good luck we can't wait to hear all about your new baby!!!!

Angel

[LisaJoy]

Oh, how exciting! Thanks for letting us know (I would have been worried not to hear from you). You will be in my thoughts and prayers and make sure hubby takes plenty of pictures to share with us!

[Dodger67]

Hope all goes well.
Bring piccies!

[janjanwhit]

I will tell you all about it as soon as I am discharged. I promise many photos!

[naomi6896]

hope all goes well, God bless you get lots of sleep those two am feedings come quick!!!!

[janjanwhit]

Well I should have had my c section by now but it has been postponed. Hopefully I will have it tomorrow morning. There has been 2 other babies born with sb so they have run out of places in the NICU!

[LisaJoy]

wow! I'll keep lifting you up in prayer! Hang in there.

[spanishchic]

Hello to you and to your new baby and congratulations! I have a 3 year old girl with SB, and like you, we foiund out inutero of her condition. The doctors basically gave us the worse possible scenario for our child, I think so that we could prepare ourselves for what POSSIBLY could be. They said she would never walk, and right now she is jumping, running, and dancing!! We had no idea what to expect and take each day as it comes. It is hard work but she is the most amazing gift I have received, along with my other kids (can't play favorites).
She was in the hospital for approximately the first 2 months of her life and has not had to return since. You and your family are in our prayers. God Bless.

[janjanwhit]

Well my c section was cancelled again! I am expecting a call midday today to see if I can have it on Friday, If not I will have to wait until next week! I am 39 weeks atm so there isnt much time! Its so stressful getting my hopes up and then going home again!!! I read my medical notes. It said that baby has a fairly large lumber saceral sb,poor prognosis.
They have only ever been positively surprised with his condition at all my scans so I can only guess that is relative. Maybe it means a baby with sb has a poor prognosis compared to a baby born without it. Thats the only explanation I can think of.
I had my bloods taken 48 hours ago so If i dont have my op on Friday they will have to re do them. They had to try twice to get the blood the first time as I have very deep veins. So stressful!!!!

[Dodger67]

Hang in there, we're here for you.

"Poor prognosis" of what?
Becoming a world famous tap dancer?
Of course we know how accurate their predictions are. LMAO!

[janjanwhit]

Everytime they say anything like that I actually feel insulted on behalf of my baby.

[LisaJoy]

Good for you, Jannah! We're insulted on his behalf too. Just tune them out. Your baby will be here any day now and you'll get to start proving them wrong.

[angel]

Some people espically doctors think they know so much. They know how to treat it but they know squat about having it!! I am sure your baby will be fine and yes i don't blame you for feeling insulted. It makes me feel like they are implying that we have less of a quality of life than the "normal" children. I am here to say and i am sure others will agree that our quality of life is just as good as anyone elses!

Angel

[Spiffynikki]

They won't know everything about the extent of the SB until your baby is born, and then they may still try to give you a worse case scenario, but don't let them get you down. When Lily was in the NICU the doctors said she would NEVER mover her legs and to not hope for too much.

She was crawling bunny hop style by two, and now crawls reciprocally (one knee, then the other) forwards and backwards, she can support herself in a tall kneeling position, and gets around great! You just have to love and support your baby and encourage him in everything he wasnts to do.

best of luck to you and yours.

[Dodger67]

I wonder what would happen to doctor's attitudes if they were forced to review all their past predictions and apologise for causing unneccesary distress by exagerated pessimism?

[janjanwhit]

Well my c section is booked in for this coming Monday. So hopefully there is room in the NICU and it goes ahead!!!

[dahliafaolan]

Our prayers will be with you, honey.

[LisaJoy]

Yes, Jannah -- still lifting you up in prayer!

[Sheena51985]

we're all praying for you and your baby!!

[Barb]

Best of luck. We are here for you

[janjanwhit]

Hello. Just thought I would let you all know that my c section has been cancelled... again. Now its Thursday the 26th of February. Thats 2 days b4 my due date! They are moving the NICU and dont feel comfortable about delivering my baby until then. I know its better for baby to stay inside me for as long as possible but its very hard on me. Its hard having to wait this long and it worries me that I might go into labour. They have assured me that if i do they will do the c section immediately. Its lucky we have family living close to the hospital that we can stay with. This has been a disappointing week. I suppose one week isnt long in the scheme of things and I am sure baby will be worth it. Gosh he will be massive by the time he is born!

[LisaJoy]

Sorry about that, Jannah! But rest easy -- they cannot possibly postpone you again. So a week from now your boy will already be here will have had his surgery! We will continue to lift you up in prayer. Hang on!

[Dodger67]

I have a "dumb" question: Whats wrong with just waiting for natural childbirth? Let the baby arrive on its own terms and schedule.

[Summer25]

I have a "dumb" question: Whats wrong with just waiting for natural childbirth? Let the baby arrive on its own terms and schedule.

I believe it can do more damage.

[Spiffynikki]

I have a "dumb" question: Whats wrong with just waiting for natural childbirth? Let the baby arrive on its own terms and schedule.


My OB said that with her hydrocephalus and myleo that I was lucky I had to have a c section, that natural delivery could have caused her more damage.

[janjanwhit]

Babies back is closed but has a large blister type thing on his back. The blister would burst if born naturally which would put baby at risk of infection.

[janjanwhit]

Hello! Fergus Graham was born at 3.43 on the 23rd of February. Weighing in at 8 pound 9. He was born by emergency c section as they made me weight so long for my c section that I went into labour! His 'cele' burst when he was born and he breathed in the fluid so had to have a ventilator for a few minutes. Apgar at 10 minutes was an 8 so recovered from that well. He may have dislocated hips as his feet were right up by his head and couldnt be moved. Been stretching them and they are almost in the normal position. One foot clubbed and the other is fine. Full movement and tone in both legs. Just none in toes and only small sensation in soles of his feet. Hydro has not increased yet since his birth. Breastfeeding perfectly. Leaking urine a lot but has a stream sometimes too. He is really cute! Will post a photo as soon as I am able. Prob another 2 weeks in hospital. I think they are overly cautious in NZ compared to other countries. They want to have a big plan worked out for him regarding his foot etc before we leave.
So looking really great!!!

[LisaJoy]

CONGRATULATIONS!!! Sounds like both of you are doing great! Can't wait to see the pictures.:26aa:

[smoop]

That's terrific news! Congratulations to you..
~Renee:happy065:

[cutie patooties mom]

That is wonderful news! Congratulations to you and Welcome to Fergus!
Bronwyn

[angel]

Congratulations!!!!!!!!!!!

Angel

[Dodger67]

A Very Special Welcome to Fergus Graham
:happy065:
We've been waiting for you!

[dahliafaolan]

Congratulations and welcome baby Fergus!

[Gymp]

Congratulations...Hi Fergus,welcome to the world!

[janjanwhit]

Going home 2morrow! Ortho came and said they would operate on his foot in a year and they are happy with the physio on his hips. h/c remains the same so surgeons are happy with that. Coming back in 6 weeks to see both departments. So hopefully nothing happens in that time and we get a good 6 weeks at home! Nurse is going to take care of his dressing and measure his head weekly. Had his stitches removed today. There are 3 babies with sb at the hospital and Fergus is the only one with leg movement. However as the Surgeon reminded me - we will have many many appointments for many many years. And that Fergus has limited bowel and bladder control. I get the feeling they want to get him put down sometimes.

[angel]

You will have many many appointments for many many years but you will meet wonderful people at the clinics! I eventually got to where i only had to go once a year for a checkup after i got to be about 11 years old. After that point i never was seen more than once a year. We got the same report everytime "everything looks good come back in a year." My last SB related surgery was when i was 8 years old. They would discuss other surgery options to make me look more "normal" but my mom always said no.
My son is only seen by ortho once a year but seen by his urologist every 3 to 4 months because of his kidney stones and bowel problems. He sees the nuro every year now that his surgery has completly healed. I am glad to hear that your child is doing so well!!!

Angel

[LisaJoy]

Jannah -- So glad you're all going home! Sounds like Fergus is doing great. Don't worry; you'll soon settle into a routine. As he grows and his personality starts to come out, hopefully the medical folks will start to see him as a person and not a set of problems.

Enjoy your sons!

[janjanwhit]

Fergus is doing really well. Eating and sleeping well. Still no shunt. Had a C T scan yesterday because his head is getting bigger, no symptoms of hydro though. Kicking his legs fine, just no foot movement. A little less movement on the leg with the talipes effected foot. Gaining weight really well and his back has healed wihout probs. Have an ultrasound coming up for his bladder and kidneys and ortho are seeing him about a suspected casue of hip dislocation in a few weeks! He is so normal it is hard to believe there is anything wrong sometimes. I guess atm because he isnt having any treatment its easy to forget. I have to remember to buy the singlets that do up between the legs as his nappy doesnt hide his scar and its quite ugly. That way strangers come up and accept him for the cute little man he is and his condition doesnt scare them - and aggrivate me!

[LisaJoy]

Awesome! So glad about the shunt.

[Barb]

Fergus is doing really well. Eating and sleeping well. Still no shunt. Had a C T scan yesterday because his head is getting bigger, no symptoms of hydro though. Kicking his legs fine, just no foot movement. A little less movement on the leg with the talipes effected foot. Gaining weight really well and his back has healed wihout probs. Have an ultrasound coming up for his bladder and kidneys and ortho are seeing him about a suspected casue of hip dislocation in a few weeks! He is so normal it is hard to believe there is anything wrong sometimes. I guess atm because he isnt having any treatment its easy to forget. I have to remember to buy the singlets that do up between the legs as his nappy doesnt hide his scar and its quite ugly. That way strangers come up and accept him for the cute little man he is and his condition doesnt scare them - and aggrivate me!
I am so glad that everything seems to be going well! :happy065:

[janjanwhit]

Still no shunt. Having an MRI in a week or so. His head has stabelised and not grown in 3 weeks!
When he had the ultrasound they couldnt do his bladder as it was so empty. They were very pleased as he is voiding it himself!

[LisaJoy]

That is awesome news!

[docshoney]

Fantastic!

[janjanwhit]

Seen his surgeons today to discuss the possibility of getting a vp shunt. They seem to think that from the ultrasounds/ct scan that its unlikely that he will need one! They said hes not out of the woods yet, but looking good!

[sabrinap11]

That is all just GREAT news!

[janjanwhit]

sabrinap11 - I believe you are in the same predicament as I once was. The doctors have told me so much stuff would happen that hasn't. My point being is that they don't know crap. They can only tell you the worst case senario. Only god knows. The real question is are you willing to take a risk. You have a 95% chance of being happy that you have your child.

[Barb]

Hey Jan-look at you! You have graduated from the new parent to the one giving advice. Isnt it so nice to get to that point? :19a:

[janjanwhit]

It is nice. Being pregnant and knowing that my baby had sb was the worst time of my life. I try and think of all the things I wish I had known and tell them to others in the same situation. I wouldn't want anybody to hurt as much as I did, not even my worst enemy.

[janjanwhit]

Update : Still no shunt. He is 16 weeks atm. His head has grown quite a bit so they feel he will have a shunt at some stage just not yet. All tests have come back saying there is no pressure on his brain from the excess fluid. He is a little behind with his gross motor skills( to be expected) but still within the normal parameters. He is above average mentally! Gaining weight well. So all in all doing very well!

[leigh828]

So glad to hear that things are going well for you guys! My son is 18 weeks...so much fun!! :)

[LisaJoy]

Good news indeed! Hang in there, Fergus.

[Scott-V.]

Hi

Back in Feb we had our son. We found out at 31 weeks that he had SB with myleo L5 region. We were very confused as well. My wife and I just got on the internet and did a lot of research. Do as much as you can. Get on here and search through the forums. Everyone on here has been a big help to us. You are in good hands on here.

[abbysdad]

I don't know how I missed this thread, but I've only just read it now... Wow, janjanwhit - what a journey! The contrast between the (extremely) pessimistic medical predictions and the reality how things are really working out for you is wonderful :)

Our Abby is 6 weeks old and had her shunt put in last Fri. It's great to read about the experiences of someone only a few months head of us - thanks :3a:

[janjanwhit]

I have learnt to not put all my trust in doctors. They are only human and can only guess. The spine is such a complicated thing that people are affected so differently from damage there. Fergus has turned out how i imagined he would , so for now i am trusting my own instincts, and living one day at a time.

[janjanwhit]

Fergus has been booked in for a VP shunt on the 14th. I am kind of really scared. I should be grateful that he has lasted this long. He will be 20 weeks when they put it in.

[abbysdad]

Fergus has been booked in for a VP shunt on the 14th. I am kind of really scared. I should be grateful that he has lasted this long. He will be 20 weeks when they put it in.

Yeah, it is scary and it's not easy to feel grateful when you're scared! (although I find gratitude is a great antidote! May post on that later).

The shunt surgery is OK. It's very quick (about 45 mins) and as long as there's no infection or blockage afterwards, the hospital stay can be quite short. A week seems common enough, but I think I've heard of some as short as 4 days. Parents just do what parents do during that week (baby snuggles!), plus make sure everyone scrubs up before touching Fergus (reduce the chance of infection) and remind medics to wear non-latex gloves (some may be unaware of the connection between SB and latex allergy, but are quite happy to wear nitriles when asked). We benefitted a lot from bringing a mobile internet connection in - kept us in touch with family/friends and this site :)

On the scared side, everyone's so different it's hard to know how to help. Is it something particular worrying you, or just the general sense of pre-op worry?

All the best - thinking of you. (keep us posted!)

[valerie]

I missed this tread too, i have a boy Cian who will be 1 on the 14th !! He had his shunt put in at 7 months, he went in on a monday, operated on Tues & was out by Thursday, done great, had a few set backs afterwards but still the same shunt in & doing really well so hang in there, he is so sociable & playful, its amazing, take each day as it comes & try not think too far ahead xx

[LisaJoy]

Sorry about Fergus's shunt. Hang in there!

[janjanwhit]

They say he will be in for about 4 nights if it goes well. I am just worried about him having a g.a. Hes just so little.

[janjanwhit]

Fergus had his VP shunt inserted and was in hospital for only two nights! Got a check up in a few weeks to check how its working. The surgeon said there was some pressure on his brain so it was a good time to have done it.

[XoBLoNDiE85]

Yay for Fergus! Glad to hear the surgery went well and that you guys are home now. I know how surgeries go and how stressful they are eeek! Now its in the past and you can relax for now :D

[abbysdad]

Great news - and you were out so quickly!

That's a big milestone done - hope life settles down for you for a bit now!

[janjanwhit]

More great news... Fergus had his bladder tests and they revealed he has no reflux!

[LisaJoy]

That's great! Way to go, Fergus!

[tracie&dee]

Hi there just read your thread....we have experienced the same rollercoaster of emotions.Matthew was diagnosed as L5-S2 SB at 20 week scan...i guess you all know the wave of questions and emotions that follow...He was born on 1st april and is now almost 4 months he has really good leg movement and has no shunt(we continue to pray and hope that he won't need one) he doesn't need cathed which is great!! i just want to say that it's really good to know that others have the same questions etc as us....good luck to you all and god bless xx

Tracie and Dee(parents to Shannon 13 y old, Ciaran 10 y old and Matthew 4 months old..(::happy065:

[lisawalker23]

good luck with that not all works out well my daughter had sb she was still born at 35 wks due to an abruption in which is due to the fact of her problem it states it in the post mortem report so im wishing you all the best ull need it

[angel]

No reflux is wonderful news!!!!!!!

Angel

[janjanwhit]

Well I am pregnant again. My 12 week scan went well. I am now 15 weeks along. The hospital wants me to have another scan soon to look at babies spine. It would be in the middle of my holiday and would have to drive 3 hours to get there. So we have decided not to have that scan and just wait until the 20 week anatomy scan. I have decided against termination if there is something wrong with our baby so the scan isnt really helpful. The only thing it would change is being able to make a 'choice' earlier into my pregnancy. If i dont want to be offered that choice it seems redundant. What do you think?

[Dodger67]

Congrats!
About skipping the scan I agree.
If you can't or wont do anything about any problem they might discover, is there any point in discovering it?

[leigh828]

Congratulations!! I agree about the extra ultrasound. Seems like it would be failry pointless, especially since it won't make a difference either way. I say sit back and enjoy the holiday. Look forward to that 20 week ultrasound when you can see your little one again. :)

[Lifeisgood]

Congratulations! I am very excited for you! It seems like you know what your "Momma's intuition" is telling you what to do, so I would run with it. Enjoy each and every moment of your holiday and pregnancy!

[Jill]

Would it help you at all to know 5 weeks earlier? Mental, emotional preparation, I mean? If you're going to drive yourself mad wondering, I'd go. If it's not going to stress you out to wait, then no point! Congratulations on the pregnancy!!

[LisaJoy]

Congratulations! You are right -- no need for the scan right now. Enjoy the holidays with your husband and two beautiful little boys (and baby 3)!

[elisaacd]

This is the first time I have read this thread and I must say that I welled up more than once. Children are such a blessing.
I am so glad your Fergus is doing so well.
Congrats on the pregnancy, I am so glad you didn't let your son's sb deter you from having another.
My first born (now 7) has sbo and we have had our fair share of problems, he is awesome and went and had another after him. Now I have my tubes tied but I am going in April (after 5 years) and having them reversed.
Can't wait to have more! Again, congrats!!!

[janjanwhit]

I have some news! Had a scan today and my baby is healthy. His spine looks perfect as well as his brain. Oh, its another boy! Was hoping for a girl but I guess a perfectly healthy boy will have to do!!!

[bcain]

Such good news to share....healthy baby boy! Congrats! When is baby boy # 3 due? I'm thinking... TV show long time ago...called MY Three Sons. Cute, cute images in my head.

[leigh828]

YAY!! Congrats on your baby boy!! How exciting! :)

[LisaJoy]

Congratulations!! So exciting for you.

[Dodger67]

Oh yes! It is awesome news!

[Jill]

Awesome! Congratulations!!

[janjanwhit]

he is due may 31st. Fergie will be 15 months old and Ashton 5.

[Lifeisgood]

Woohoo!!!! So happy to hear the good news!

[Erika G.]

Hello,

I have a 17mo. old boy born with sp. I love him to death, he is a blessing in my life. He also kicked in my stomach and is now crawling, with theraphy and faith, we hope we will be able to walk, maybe with support. We have had more happy days then bad ones with him. I would not change him for anything. I really wish you the best and pray that you find comfort in this forum. We are all here for a reason.

Erika G.

[valerie]

Thats great news, good for you... i totally agree girl would be nice but a healthy baby is the best news ever. i am delighted for you & your family. well done..... you will be a busy mum!!!!

[ainemc]

Congrats! Now you can relax and enjoy the rest of your pregnancy although im sure you don't get too much relaxation with having two sons already! All the best!

[Dodger67]

How are mother and sons doing?

[janjanwhit]

Wow... this thread I started has had a few views! Well Fergus is 2 today and crawling all over the place. Walking on his knees. He basically has perfect health and is very happy. I had another baby boy who i named Max and he is 9 months old now. He was diagnosed with a milk protein allergy so is a bit undersized but gaining lots of weight on soya formula. He is almost crawling, rolling and wiggling all over the place. My 5 year old is doing well in school and is having his first piano lesson tomorrow. I have recovered from my bladder fistula and am now cath free! So all in all we are very well!

[Dodger67]

Brilliant! :dance2: