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Old 09-12-2006, 06:15 PM   #1
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Re: Baby with tethered spinal cord

Hi,
I have a five year old son who was diagnosed with a tethered spinal cord at birth. He had surgery at 2 months old to release his cord. Here is Adam's story.
When Adam was born he had a skin tag over the base of his spine as well as a slightly raised lump. Luckily, because of other expected complications a neonatologist (and friend) was there for his birth. I am an OB nurse who had worked mother/baby and nursery for 10 years when my son was born. I had never heard of tethered cord syndrome - that's how rare it is to see. The neonatologist swears it was divine interference because he was reading a current article on this the week before. He told me that my son most likely had occult spina bifida and possibly a tethered spinal cord - he explained that as well. An ultrasound of his spine confirmed the diagnosis that day and we were given an appointment with the local Children's Hospital in St. Petersburg, Fl.
While in the hospital my pediatrician gave me conflicting information. He first informed me that a tethered spinal cord was much better than spina bifida - confusing since the doctor that delivered my baby actually has occult spina bifida and has no problems or symptoms from it. Anyway lots of conflicting information.
At two weeks old, my son saw the neurosurgeon. She told us we'd need and MRI to confirm the diagnosis and the extent of the lesion. Adam had the MRI soon after that - put to sleep with medicine in his IV so he would be still for the test.
The MRI showed a lipomyelomeningocele in the sacral region with a tethered spinal cord - a fatty tumor involved in tethering(tying) the cord much lower than it usually descends into the spinal canal. For example, our spinal cords end in the lumbar region making it possible for us to have epidurals or spinals for labor in the region below where the spinal cord ends. If the cord is tethered to the sacral region it extends much lower than normal. Even when untethered, the spinal cord is not elastic - it does not spring back to its normal position. Therefore, Adam can never have an epidural or spinal, and he could only have a spinal tap if a neurosurgeon were to be present.
Anyway at two months old, a neurosurgeon in Philadelphia released Adam's cord. The surgery itself was very trying. He could not be picked up and had to lay flat for 24 hours after surgery - very hard for a two month old breastfed baby. Agonizing for us. When they removed his dressing he had staples from just under his mid-back vertically down to where the crease in his buttocks began. We spent the next six weeks cutting the backs out of diapers, taping the edges, and applying a plastic "poop drape" to Adam's back just below the incision. This contraption kept the stool out of the incision. Each night we cut the next day's supplies of drapes, etc. He was only in the hospital for 2 days after the surgery, so all of this was done at home.
The one thing we hadn't thought about was the car seat. It was very uncomfortable for Adam despite a foam padding we added to the back area. We ended up finding a car bed - an approved restraint bed to drive him around end for the first week or two after surgery.
You should also see a pediatric urologist as urinary tract problems like kidney reflux and bladder issues are usually seen with a tethered cord. My son had kidney reflux which he did outgrow.
We noticed soon after the surgery that Adam became chronically constipated. The doctors treated this for about a year with Milk of Magnesia which was horrible and unpredictable. Our urologist told us about Miralax soon after is was approved for children. This is a lifesaver. You can easily adjust the dose depending on bowel habits, and it's a powder that dissolves tastelessly in anything - even milk or water. It's soooo much better than the alternatives.
About two months after the surgery Adam still wasn't reaching normal milestones with rolling over and moving his arms. We think this was just a reaction to the surgical pain - he had learned not to move too much and had developed low muscle tone. We worked for about a year with first an occupational therapist and then that combined with physical therapy 2-3 times a week. We taught Adam to reach for toys, to turn over, to crawl, to walk. We learned to appreciate everything we took for granted with our daughter who was 8 when Adam was born. On the plus side, my husband, my daughter, and I all became experts at making this work and making it fun. My daughter was a wonderful motivation for Adam and the occupational therapist was constantly praising her and encouraging her to consider working in the field someday.
Don't let me give you the wrong impression, Adam is and always has been very intelligent. His speech is perfect, his IQ is incredible, and he has a wonderful sense of humor. Starting kindergarten, he is already reading, knows all of his letters and numbers (to 100) and can write and recognize both. THIS DOES NOT MEAN THAT YOUR CHILD WILL NOT BE INTELLIGENT. I wish someone had said that to me when Adam was having all of these problems.
Adam potty trained when he was almost 4 - we were late but not impossible. I was scared to push it - but he couldn't start Pre-K with pull-ups. Our doctors told us they wouldn't know whether he could potty train until he tried - we were terrified to try. Looking back, I can see that. I am glad we waited until he was older.
Sacral nerves affect the bowel and bladder and lower legs(foot/ ankle). When Adam had surgery as a baby, they were able to tell us that he had normal nerves with normal response on the right, but no normal nerve development on the left sacral nerves 1-4. This meant that the right side of his bowel/bladder had nerves to sense fullness, etc. The left side did not. No one could predict how much the right nerves would control.
The reality is that Adam still has occasional accidents. Bowel is more difficult to control because he does not have good innervation to his anal spinchter which holds stool in. We have taught him to push stool out if necessary by bearing down. When he is constipated, he has difficulty controlling and preventing small "poop balls" from escaping. Antibiotics put us in a tizzy because loose stool is very hard to control and usually requires the use of pull-ups.
Bladder is better but not perfect. From ultrasound we know that Adam has a neurogenic bladder that does not empty all the way. In other word when he urinates he goes but he doesn't get it all out. This puts him at higher risk for bladder infections. He urinates more often than other children. He also can go and then have to go "really bad" again 5 minutes later.
By the middle of the first month of pre-k, Adam was free of urinary accidents. Stool accident still happened maybe once a month for the rest of pre-k. We developed a "potty backpack" whic had extra changes of clothes, cottenelle wipes, and plastic ziploc bags to put clothes in. We taught him to change his own shorts, underwear , and to clean his bottom with wipes when he had a problem. The kids got used to seeing Adam take his "backpack" to the bathroom. ]
Kindergarten has been harder because of the longer days and the lunchroom. The lunchroom volunteers are difficult to deal with. When Adam has to go, he doesn't have the 30 seconds necessary for someone to study him and decide that he really means it. After one lunchroom accident - that could have been prevented by them letting him use the restroom immediately- we were back at school to talk to everyone. It breaks your heart when your child hurts. Adam still has his potty backpack - so far the kids are still very accepting. Some weeks we have no accidents, some 2 or 3. We hope control becomes better as he learns to speak up and go immediately instead of completing an activity first. All in all though we are thrilled with his progress.
Adam runs, plays, laughs, cries, and gets into trouble just like every other 5 year old. He is more loving, more sensitive to other children's feelings when they are hurt or sad, and more intelligent than many other kids his age. These are his gifts which more than make up for what is not all perfect.
Adam cannot run as fast as some of the others - he does have some weakness to his left leg. He has a mild limp when he is ill or tired. He tends to walk on the inside of his feet(pronate).
We go to the spina bifida clinic at Shriner's Hospital in Tampa once a year (every 6 months when he was a baby). If you have a shriner's orthopedic hospital near you, get involved in this from the beginning. It is a chance to be evaluated by an othropedist, a urologist, a neurologist all in one day. If orthopedic foot braces are necessary they make them. If x-rays are necessary(and they will be) they do them. All is at no cost to you. The people are wonderful, and they have so much information at their fingertips. They provided foot braces for Adam as he started to walk - to correct the pronation. He later developed foot eczema and cannot use them anymore, but they would have made them until no longer needed. These are custom molded and made for your child in bright fun patterns. Shriners is a blessing. You also realize how lucky you are as you see all forms of spina bifida there. As your child walks in, it almost seems like you really don't need to be there, but the staff does not feel that way and they are happy to treat and help all children with spina bifida in their clinic.

 
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Old 09-12-2006, 06:16 PM   #2
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Re: Baby with tethered spinal cord

We have no history of spina bifida in our family. I took my prenatal vitamins every day. Did you take your prenatal vitamins? is a question you will hear anytime that you mention spina bifida. Many times said in the same vocal tone as - "you could have prevented this, you big dummy". I probably am overly sensitive, but I find the question insulting and the first one to ask it was the neurosurgeon. At Shriner's I learned that lipomyelomeningocele is a type of spina bifida that they really don't think has a folic acid connection. Obviously you should still take it while pregnant, but let that pound of guilt roll off your shoulders if you missed a few vitamins.
This was not diagnosed prenatally - most of the time it isn't. The alphafetalprotein test only picks up open spina bifida. On the plus side occult spina bifida has a much better outcome.
Follow up is important, the cord can re-tether and with lipomyelo it usually does at least once before the children are adults. You cannot diagnose re-tethering by MRI. It is diagnosed by bowel and bladder symptoms first, usually. Unfortuneately, once the symptoms are present, they usually are not reversibe, so early detection is the key. This puts a lot of pressure on mom and dad, and you will worry about every little ache and pain, every little accident.
I am sorry to write a novel, but I remember that there was NO information or support available to me when Adam was first born. I hope this helps someone. You are in my prayers and best of luck. Keep me posted. I don't check the boards every day, but I do get there a couple of times a week. Good luck. Remember to take time out to enjoy your baby. Adam is such a wonderful, happy child that he makes up appreciate life all over again.
Love,
Debbie

Sorry to separate into two posts - the first was too long - imagine that.

 
Old 05-27-2007, 12:20 AM   #3
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Re: Baby with tethered spinal cord

Deb,
Hi my name is Courtney, I am a single mother of two Tyler who is 18 months and Miles who is 6 weeks. I was so moved by Adam's story that I had to join this board just to post a reply. Thank you for sharing his incridible story. Miles has just been recently diagonised with a possible low lying tethered cord. He has had one ultrasond, and he goes for his MRI when he is six months. His ped. said that it might be nothing, and it could very well be somthing that could require surgery or maybe many surgies. I appreciate you insight and any info and or support would be helpful. Again I can't thank you enough for sharing.

 
Old 02-26-2008, 10:23 PM   #4
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Re: Baby with tethered spinal cord

Deb,

Thank you so much for your information. My wife and I have a 3 month old daughter, and she has a small lump on the small of her back. We saw a pediatric neurosurgeon today, and he thinks she has a tethered cord. Of course, we wont know for sure until the MRI. It is very difficult to get information, especially for infants. Thanks again, hope you and your family are doing well.

 
Old 02-22-2009, 09:56 AM   #5
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Re: Baby with tethered spinal cord

Hi Deb.
I just read your son's story. We have much in common. My son was born with Lipomyelomeningocele that required surgery by the time he was 5 months old. He had fast growing fat in his spinal cord which had not been seen before by any of the neurosurgeons we had involved. He had surgery and that relieved many of his issues including bladder control and weakness in his left leg. We were in the hospital for a week. I stayed there with him and had all the same challenges - with poop and keeping the surgicial area clean. I REALLY wish I would have read this before we went into surgery.

However, we just had another MRI a few days ago and they are suspecting a re-tethering of the cord at L4. He is only 2 years old and my heart is breaking we have to go through this all over again and the fear of new issues that may arise if surgery is suggested. He has done so well. He is very bright as well - he can recongize some words, remembers everything, and says many words but his speech is delayed. Our child development specialist said that at the 5-6 month stage when babies are perfecting their babbling his brain was more involved with trying to control and learn movements after the surgery. That made sense to me and I am not at all worried about his intelligence

Anyways I just wanted to thank you for your post. I wanted to know how your little one was doing and if you could shed some light on what exactly causes re-tethering. Is it the scar tissue or does the fat start to grow again?

Many thanks in advance,

RupiB

Last edited by moderator2; 03-31-2010 at 09:20 AM. Reason: please don't leave huge quotes in your posts

 
Old 03-30-2010, 01:44 PM   #6
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Re: Baby with tethered spinal cord

Deb, thank you so much for posting Adam's story - I have a 4mo son who will be having this surgery at the end of April.

I have a few questions -

Is there anything I can do to prepare for nursing him through this?

Where can I go to find some percentages of re-tethering, etc.?

Can you tell me more about the car seat bed?

 
Old 03-31-2010, 09:06 AM   #7
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Re: Baby with tethered spinal cord

Hi Kate - I haven't been on this board for a long time. My son had re-tethering surgery at 5 months of age in April 2007.

I am not sure if you are breastfeeding or not but i was told by nurses it really helps their recovery - and I truly believe it did. You won't be able to pick up your little one for a couple of days at the least - that has to be one of the hardest things to do when they are in pain. I had the baby positioned at the edge of the bed and I would lean next to him to feed him. It was a bit of an art but I think that was very soothing for him and it was the next best thing to being able to hold him. However, if you are not breastfeeding - just being close and putting your arms around him (even though he is lying down) will feel like he is being held. It will do both of you a world of good.

I will not lie - when they first come out of surgery it will be very difficult to see. His face will be swollen but I believe that is due to the IV (hydration) they give them but it goes away in a couple of days or sooner. For the first day he will likely sleep mostly and when he cries his voice will be dry and raspy but that is because of the anesthesia - again this will settle soon after. They will have him on morphine for the first few days which really helps keep them comfortable. You will be amazed at how fast they get back to their normal selves.

One bad experience I had was a nurse who decided to change his diaper the second day after his surgery. She was not experienced and she got the incision area contaminated with poop which required the bandages to be removed. Unfortunatley she thought she could do it herself - it was very painful for my son and I had to intervene as she just kep on taking bandages off. Luckily a more experienced nurse came by and took over when I called for her and she (with the assistance of another nurse) cut around the dirty bandages and replaced them. I was very upset going through that experience. Just don't hesitate to speak up for your child.

I would also bring some books and pictures along that the baby can look at lying down to keep him occupied. Even toys that he can hold if he will be there a few days.

My son was very irritable and cholically before the surgery but after the surgery (litterly 3-4 days later) it was a whole new child. He was smiling and looking at everyone in the eyes and just connecting way more. I believe he had pain from his tethering and once it was released he was free from it for the first time. No matter how difficult the surgery - know in the end your little one will be better off for it.

My guy is 3.5 years old now and doing great. They told us that there is a 60% chance cords can re-tether and it usually happens in times of growth spurts. They said to watch him closely around 5 years and then early teens. Its likely to happen then if it does and it will be bladder issues or issues with his left foot (turning in or numbness). We are focussed on the 40%. We had a scare last year where they saw re-tetherng in the MRI but it turned out to be just fluid building up which is normal and goes away by itself daily.

However, he has gone through a growth spurt these past few months and complains of knee pain at least once a month but motrin seems to alleviate it. WE have spoken to the neurosurgeon and he isnot sure what to make of it but says if motrin is working to use it when it happens and to bring him in next time so he can observe it.

Good luck to you and your son. I am sorry for going on so long. I hope it provides some useful information. Please just know that you will get through this and you will be amazed by how amazing these little guys are and how quickly they recover!

All the best
RupiB

Last edited by moderator2; 03-31-2010 at 09:21 AM. Reason: please try using the Quick Reply button instead of Quote Reply

 
Old 03-31-2010, 09:13 AM   #8
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Re: Baby with tethered spinal cord

Just another note if you will be trying to breastfeed him - you will need to slide him from one side of the bed to the other in order to feed from both sides. He should be on a board so that won't be difficult to do and will not cause him any discomfort. I would ask the nurses to help you for example when they are already there for the diaper changes.

 
Old 04-08-2011, 12:52 PM   #9
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Re: Baby with tethered spinal cord

Quote:
Originally Posted by debsite View Post
We have no history of spina bifida in our family. I took my prenatal vitamins every day. Did you take your prenatal vitamins? is a question you will hear anytime that you mention spina bifida. Many times said in the same vocal tone as - "you could have prevented this, you big dummy". I probably am overly sensitive, but I find the question insulting and the first one to ask it was the neurosurgeon. At Shriner's I learned that lipomyelomeningocele is a type of spina bifida that they really don't think has a folic acid connection. Obviously you should still take it while pregnant, but let that pound of guilt roll off your shoulders if you missed a few vitamins.
This was not diagnosed prenatally - most of the time it isn't. The alphafetalprotein test only picks up open spina bifida. On the plus side occult spina bifida has a much better outcome.
Follow up is important, the cord can re-tether and with lipomyelo it usually does at least once before the children are adults. You cannot diagnose re-tethering by MRI. It is diagnosed by bowel and bladder symptoms first, usually. Unfortuneately, once the symptoms are present, they usually are not reversibe, so early detection is the key. This puts a lot of pressure on mom and dad, and you will worry about every little ache and pain, every little accident.
I am sorry to write a novel, but I remember that there was NO information or support available to me when Adam was first born. I hope this helps someone. You are in my prayers and best of luck. Keep me posted. I don't check the boards every day, but I do get there a couple of times a week. Good luck. Remember to take time out to enjoy your baby. Adam is such a wonderful, happy child that he makes up appreciate life all over again.
Love,
Debbie

Sorry to separate into two posts - the first was too long - imagine that.
I just wanted to say that you don't have to have spinabifida to run in your family in order for it to happen. The key here is to take your prenatal s BEFORE you try to get pregnant. Spinabifida happens withing the first 4 weeks after conception...for most we don't even know we're pregnant yet.
My oldest suffers from spinabifida occulta. It took us a year for it to get diagnosed. Fortunately he had no tethering of the spine.

 
Old 04-09-2011, 06:03 PM   #10
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Re: Baby with tethered spinal cord

Hi Debbie - thank you for your post! I did not realize that the first sign of symptoms could mean permanent damage as well as re-tethering. Our son has been complaining off and on about knee pain. I have taken him back to the neurosurgeon and he does not believe its re-tethering but he does want us to come back every 3 months to keep an eye on it. I am starting to think its more muscle development ( or there lack off)on the left side. Regardless, I was hoping to learn more about first symptoms and what to watch for ... have you heard of others who have seen these symptoms come up and what the outcome was? I know every case is different but every little bit of information helps.

I hope all is well with your family Debbie.

Take good care
Rupi

 
Old 05-06-2011, 11:07 PM   #11
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Re: Baby with tethered spinal cord

Hello, wow I have read all the stories, of the children with tethered spinal cords. I also was born with this, I remember when it starting affecting me was when I was around 10. Im trying to make along story short, I had alot of symptons, like loosing the use of my legs for days, alot of back issues. The wild thing with me is no doctor would ever do a test on me. Then at the age of 32 the back pain etc got so bad and still no doc would listen so I decided to go to a chiro, and at least he did the mri to find this problem. No one could beleive this, and that I could walk and had children. So I had to go to a special neuro who dealt with birth defects, and he was so amazed, and I was so angry that no doctor would ever try to find out what was wrong with me. But then he said to me, even if they would have known at the time they could have not done anything to help me. At least now they can do more for this problem. I did have the surgery to un-tether my cord, but it just got worse my back will lock up and I will be in a wheelchair for months, its scary and I never know when it will happen, I have so many problems with my legs, knees feet and ankles also. But the Doc said it had been like that for so long that when he did the surgery it would probably damage every nerve in my back and it did. Sorry for the long post I was so amazed to see someone post about this condition, because I do think it is rare. I do wish you all the luck,

 
Old 08-15-2011, 12:32 PM   #12
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Re: Baby with tethered spinal cord

Hi everyone,

This is my first post to this board but I wanted to share my son's experience to just illustrate how different people's experience can be, even when the same procedure is being done.

My son is 4 months old and just had a procedure to untether his spinal cord at Tufts Floating Children's Hospital. He was diagnosed at birth with a fatty filum because he was born with a sacral dimple. We were quite worried about the procedure and aftermath since my son breastfeeds and doesn't like lying on his tummy. However, apparently I didn't need to be.

The procedure took 3 hours. My Dr. used dissolvable stitches and dermabond. He said because he was using the dermabond there was no special treatment of the site required. My son's pain seemed managed well by infant tylenol. He wasn't forced to lie on his stomach and I was nursing him in my arms as soon as he was awake enough (the nurses helped me maneuver him while he still had the IV hooked up). As far as I'm aware there have been no complications. There was a neurophysiologist monitoring my son the during the entire procedure to make sure the surgeon wasn't getting near any nerves that controlled important things. Of course, we'll see how things progress over the next few months but so far (here's to keeping my fingers crossed) so good. I still have the shiny bubbly baby that I brought to the hospital before the procedure.

So, be aware of how things can go during this surgery, but keep in mind it isn't always like that. I'll keep people posted if anything else develops.

 
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Old 06-27-2012, 08:53 PM   #13
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applepie2424 HB User
Re: Baby with tethered spinal cord

Hi!
I was born with spina bifida that was not visible (and still isn't with no hairy patch) and diastematomyelia. I have had four spinal cord detetherings, with the most recent one done November 21st, 2011. I'm glad your son is doing better, I know how it feels. My incontinence affects me about once every month or two, especially if I have had coffee, soda, or anything with caffiene or sugar in it, so I have to use the bathroom immediately if I feel the need. I hope your son's teachers allow him to go as needed, because we have dealt with those problems (my school vice principal is not sympathetic and controls the whole school). My left leg is also weaker and I scissor my legs when I run. I'm especially happy that his classmates are nice about his problems. I know he's smart and will become very bright, though his physical disabilities may limit him in sports and such. I wish you guys luck with his condition and hope he doesn't have to go through more surgery, as they are not fun.

 
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