Birth and the hospital

[janjanwhit]

I am due to give birth to a little boy with SB in February. I would like to hear peoples experiences about what happens when babies with SB are born. How long did you stay in hospital? What were the early weeks like after you arrived home? I am worried that we live too far away from the hospital. We live 1.5 hours away from the nearest big hospital.

[cutie patooties mom]

Hello! I had my daughter 11 years ago, so it's a little fuzzy. We lived 1 hour away from the hospital that I was sent to. I remember being in labor in the car thinking I wasnt going to make it. But, I did! I had a c-section and stayed in the hospital for 3 days. We were allowed to visit my daughter every 4 hours in the NICU, and we had to scrub up and put on gowns, masks, booties, etc. Every nurse or specialist that was in the NICU was so patient with my constant questioning. We stayed at the Ronald McDonald House for free, which was a mile from the hospital. (They were wonderful!) Gabi stayed in the hospital for 16 days. They did the back closure at day 1 and waited until day 9 to do the shunt. My biggest fear at the hospital and when we got home was the catheterizing. She has had it done from day 1 and I cried because I thought it was so personal. She doesnt know any other way and she has been fine with it. She does it herself now. We also were always feeling her soft spot to see how her fluid was. Hers was sunken a lot after the shunt was put in. Other than that, we loved and hugged and kissed her, sang to her and talked to her. She was the most beautiful miracle (and still is.)

[joybell322]

Lizzie was born 6 years ago. She has SB in L4,5 & S1 (I think that's right). The back surgery was done when she was just 4 hours old. I was still groggy from the anesthesia for the C-section, so I don't remember how I felt about that surgery, thank God! I didn't get to hold her the 12 hours because of the surgery, but I did get to touch her alot which helped my emotions a little. But, truth is, I was so sick from the anesthesia, I probably couldn't have held her!

She had hydrocephalus at birth, but our neurosurgeon waited until 6 months to shunt. Great for us, because a shunt was drastically improved during that wait time!

She had club foot & one turned the other way (can't remember what it's called), but the club foot was casted when she was 2 days old. That may be what I hated the most, because they really turn the foot almost backward to cast it. It looks like it would hurt, but it doesn't.

She was 7 days in the NICU. Then we took her home. I lived 2 hours from the hospital where she was born, but we stayed with friends.

We didn't have to cath until later. We just gently pushed on the bladder & she was able to wet on her own.

She has had about 60 or more UTI's. But so far everything is okay.

We keep up with scads of doctors, so my one suggestion for you is to keep a good calendar.

Best wishes!

[angel]

I can tell you what my mom told me about mine. Of course this was back in 77.

They knew nothing about SB i have it at L4/L5

I had a bandage on my back for 6 days my mom never saw the lesion because they told her if they took it off meningeitis was a possibility.

Never had to have a shunt

Had club foot repaired at 6 days old and a spinal fusion at 8 years old and a c section done for my son's birth in 1996.

Other than that there have been no surgry

I have had a million UTI's and took meds for that since i was born.

When my son was born i remember that we weren't expecting his SBO. We had all the tests done (the doctors wanted to make double sure no SB at all) and i had a picture of his spine on sonogram (from the back view) every month throughout the pregnancy. I had 3 amnio's done all showed nothing.

At birth his neck popped really bad so they did x ray's and all but 3 of his vertibre were deformed but could only be seen from the chest view. He has no sacrum at all (neither do i)

I wasn't to afraid or upset because i knew everything would be fine. I had already been down the road before him so i had the comfort of it all being familiar to me.

Angel

[Barb]

This was 10 years ago for us as well but I can tell you that our experiences were pretty close to the others. I had a vaginal birth though because we did not know prior (despite an AFP test and 6 ultrasounds). C was only in the hospital for 6 days. I was discharged after 24 hours. His closure was about 12 hours after birth. He was not shunted until 4 months. We did not have to cath and never have had to. We were able to hold him after about 24 hours. They also let grandparents visit and hold him. We were not allowed to stay the night with him. You will have to scrub in and out most likely.

Gosh, it goes by so fast and I can barely remember some parts while some are so vivid I will never forget them. Take a tour of the NICU ahead of time if you can. That will help ease your mind.

[smoop]

My daughter was born 3 years ago so it's still pretty fresh in my mind! I had a scheduled c-section but went into labor at 37 weeks instead. We were very fortunate to live only 10 miles from the hospital.

My daughter spent 14 days in the NICU. I was originally told it would only be 7days but her hydrocephalus was border-line requiring a shunt and the doctor's didn't want to operate unless it was absolutely necessary. She ended up getting her shunt at 3 months old as her hydro started worsening.

Since we lived so close to the hospital I made 2 daily trips to visit and nurse her (I only spent a couple of days in the hospital to recover). The NICU allowed us to visit pretty much whenever we wanted.

I'll be honest, for me the hardest ordeal was dealing with not having my newborn child home with me. To make matters worse, each day I was told by the doctors that she may get released the following day only to find out "not today"...

After her release the best thing was sleeping with her for 2 months. It really gave us a chance to bond. Other than having umteen doctors appts and giving her daily meds (antibiotics to prevent UTIs) she was pretty much like caring for any typical child.

Hope this helps. Hope that everything goes well for you and your child.

[Barb]

Yeah, that is one thing to be prepared for....the gazillion doctors appointments the first year.

[janjanwhit]

Thank you so much for your posts. They are making me feel so much more positive.

[Dodger67]

A few words of advice:

Be prepared to fight ignorant attitudes, even from medical staff.

Go around, over or through anyone who has any delusions of trying to unreasonably limit your access to your baby.
Hospital burocrats sometimes have such delusions.

[ZoesMom]

We had Zoe going on five months ago now. So out of all the replys to this thread im the freshest. I had a scheduled c section at 37 weeks (June 4th). When I got to the hospital my body was already gonig into labor. Once they got her out i got to see her for about aminute and then she was wisked away to the nicu. From that point until 13 hours after she was born i only saw her through pictures cause of my c section. I was wheeled into the nicu to see my baby for the first time. She had her back closure at 2 days old and shunted at 7 days old. She stayed in the nicu for 12 days but manily bacuse days 10 and 11 were sat and sun so no docs were there to really release her. Since then we have had countless doctors appointments saying as to her adjustable shunt that was first put in didnt want to cooperate. Then at about 2 1/2 months old we started casting for her club feet. she just got done with casting and is in her dobbs bar. she had a revision of her shunt about two months ago so she has had 4 surgeries including her heel cord tenotomy. We are doing great at this point. My word of advice would be be prepared to have post-partum depression. I got it bad and my husband was no help in the department cause he didnt even notice. I've still got it but i just started going to therapy for myself and hopefully all will go well.

[janjanwhit]

I have bipolar disorder which was diagnosed after my sons birth 3 years ago. I was so depressed that I cant remember his first year of life. Thats something I was worried about before I knew about the SB. I just keep reminding myself that I have to stay well because I am so needed now. I cant let myself get that bad again.

[janjanwhit]

I have asked how long babies are in hospitsl for that have sb. The doctor told me 3 weeks was the shortest time they had heard of. They said 3- 4 weeks if everything goes well.

[dahliafaolan]

Well, I can tell you it varies from child to child. I myself was a T-11 or T-12 lipomyelomeningocele. I was born in our local hospital and then I was shipped to Tulane at day 5. I'm pretty sure I was sent home a few days later after having my bladder rerouted in a vesicostomy at day 11. I didn't have my spinal closure until I was 3 months old. But once I was discharged from the surgery, I went straight home.

[Dodger67]

In the US the average for "uncomplicated" SB (with or without hydrocephalus and/or clubbed feet) seems to be about 2 weeks - going by posts here.

[naomi6896]

I can tell you what my mom told me about mine. Of course this was back in 77.

They knew nothing about SB i have it at L4/L5

I had a bandage on my back for 6 days my mom never saw the lesion because they told her if they took it off meningeitis was a possibility.

Never had to have a shunt

Had club foot repaired at 6 days old and a spinal fusion at 8 years old and a c section done for my son's birth in 1996.

Other than that there have been no surgry

I have had a million UTI's and took meds for that since i was born.

When my son was born i remember that we weren't expecting his SBO. We had all the tests done (the doctors wanted to make double sure no SB at all) and i had a picture of his spine on sonogram (from the back view) every month throughout the pregnancy. I had 3 amnio's done all showed nothing.

At birth his neck popped really bad so they did x ray's and all but 3 of his vertibre were deformed but could only be seen from the chest view. He has no sacrum at all (neither do i)

I wasn't to afraid or upset because i knew everything would be fine. I had already been down the road before him so i had the comfort of it all being familiar to me.

Angel


Hi Angel,
My name is Naomi my son is twelve and has SB L4/L5 any insite you can give me would be great...............He is awesome! he is very quiet and his patience is unmatched.....someone said that most kids with SB are like that... I don't know I have two other kids with SB and they are not patient or quiet...
if you can offer any advice or insite on what to expect in the future please let me know......................he can walk, no shunts, he has no bowel and bladder control. He is in regular ed classes with 504 for modifications like more time for assignments to be completed. he is on the Jr High basket ball team.

[angel]

Hi Angel,
My name is Naomi my son is twelve and has SB L4/L5 any insite you can give me would be great...............He is awesome! he is very quiet and his patience is unmatched.....someone said that most kids with SB are like that... I don't know I have two other kids with SB and they are not patient or quiet...
if you can offer any advice or insite on what to expect in the future please let me know......................he can walk, no shunts, he has no bowel and bladder control. He is in regular ed classes with 504 for modifications like more time for assignments to be completed. he is on the Jr High basket ball team.

Namoi,

I can give you insight into just about anything you would want to know. I have lived 31 years with it and have had a great life. I will be more than happy to discuss anything you want to anytime!

I have to address the patients comment lol. Maybe it is just me but patience is not a vertue i have. I may be the odd duck on this one. I get my best ideas on how to come up with a different way to do things when i am really pissed off. As a side note i always do my best house cleaning when in that mode as well.

As far as the future it is unwritten. It really is up to him. What you can do as a parent to insure he has the best future possible is to just treat him like you do your other kids. Same rules, same boundries, same expectations. Don't do everything for him. Let him try to do everything for himself. Let him struggle with it then when you know what he absolulty needs help with give it to him. The bowel and bladder issue well that is one he will have to learn to manage on his own. My son is 12 and has SB occulta and sacral agenesis. He has no sacrum whatsoever and has the same issues. With him I am like a drill seargent with his bathroom issues. What i tell him is there is no shame in getting dirty but there is shame in staying dirty when you don't have to. He being a tween he has so much on his mind that i have to stay on top of it. He is continent after many many many years of trying to get him on a schedule. If he doesn't pay close attention to his body he will have accidents. I have to give him credit it has been a very long time since he has. Also he knows he will be busted if he doesn't clean any accident up immediatly so he has quit fighting me on that one to.

There is so much to tell but i don't even know where to begin if you have any questions please feel free i will gladly answer

Angel

[lsanchez]

Well i was induced back in Sept. 4th. He was born that day transfered to a nearby hospital to have his back closed the next day. The hospital i delivered at was an hr. away b/c i wanted to be close to the hospital he was going to be at it was only a 5 min. drive in between. 2 days later he had a shunt put in. and came home when he was 10 days old. I drove over every day.
Once your baby comes home everything feels much better. You'll get your bonding time

[NEMOM]

My little girl turns 4 this month. We did not know beforehand that she had sb. We were flown to childrens hospital and then waited for hours before she had surgery. I did get to nurse her 3 times before surgery, but that was before we arrived at the children's hospital. I was grateful as that was very important to me and for her.
I "lived" at the hospital. I only left to go take a shower at the place my husband was staying. They closed the opening within 16 hours after her birth and did tests to see if she needed a shunt. She was released after 5 days and we went back every other day to monitor the hydrocephalus. When she was 17 days old she had a shunt placement. The first year was busy with doctor appts, but there was lots of time to just enjoy her.

We cathed her at first, went through several months where she went on her own, and then have cathed ever since. She was on antibiotics for four months and then we tried going without and boosting her immune system. She has not been on antibiotics for 2 years and we have had no problems with UTIs.

Enjoy your little one when he/she comes. Children are a blessing and I am very thankful for my sweet little girl.

Sincerely,

Cindy

[Barb]

I have asked how long babies are in hospitsl for that have sb. The doctor told me 3 weeks was the shortest time they had heard of. They said 3- 4 weeks if everything goes well.
6 days here. He had closure but not a shunt.

[smoop]

I was told that typically the child would stay in the NICU for 7-10 days. Analise was in for 14 days due to her hydrocephalus. It was border-line needing a shunt and they didn't want to put the shunt in until it was necessary. They closely monitored it between the 7th and 14th day when they finally decided to release her without one. By 3 months of age it was increasing and the shunt was necessary.

[janjanwhit]

Thanks so much everybody for all the replies. February is coming up fast and I want to be as prepared as I can!

[janjanwhit]

Just gotten back from my next scan. They say one foot is clubbed and the other slightly abnormally rotated. his hydro is slightly worse as expected but its an average amount for a baby with sb. he is of average size. His defect is covered. Does that mean that he has a better prognosis because it is covered?

[dahliafaolan]

From what I've seen, the prognosis usually is a little better if the defect is covered. It tends to make it easier to repair, plus it lowers the chances for meningitis. I myself had a covered defect and I was lucky enough that the skin there was just as thick as my skin anywhere else. So now if it wouldn't be for the scars from my surgeries and the leftover physical deformities from my scoliosis, you'd never know I have anything wrong. And from what I have seen, the hydro tends to be less problematic in closed SB kids.

[Barb]

His defect is covered. Does that mean that he has a better prognosis because it is covered?

I have read studies (don't ask me to quote them in this brain fog) that suggest that the less exposure the open nerves have to the amniotic fluid, the better the prognosis. I believe that is one of the major supporting premises of fetal surgery.