One in a million...

Firstly, for those that may not have noticed. I got some interest from people that just quickly wanted to read about Boeboe. They might not want to scroll through all the years' posts to try and find out what happened to Boeboe. You can now just click on the 2nd tab underneath the top photo, on "Boeboe's story". I still want to make it look neater later on. In there is a short version of what Boeboe went through, and links to the most relevant posts if you're interested in learning more.

So while looking at the old posts, I read the one about her surgery. And I relived through some of the emotions. The one moment I haven't written too much about yet, was the one that stood out to me more than any other moment the past 4 years with Boeboe. It was the moment the neurosurgeon came out of theatre to give us an update on Boeboe's untethering surgery. He told us that when he opened her up, he couldn't find anything that tethered the cord. The filum looked normal, not fatty or enlarged. Very thin in fact. And he couldn't cut it because there was too many nerves entangling it.

The feelings that filled my heart at that moment....it was indescribable. Horror, dread, unbelief, despair, but most of all, guilt.

When Boeboe was about 4 or 5 years old, I heard about a friend who was diagnosed with Spina Bifida Occulta. Before that, I only knew that Spina Bifida was something that you fear newborn babies might have, and that it meant something bad. I've never met anyone with Spina Bifida before and knew nothing about it. I was amazed that it could apparently be diagnosed years or decades later as well. Usually, in that instance, it would be Spina Bifida Occulta. Meaning, it was hidden. So the backbones have an opening in them that never developed fully, but the skin was/is closed, unlike when you have Spina Bifida (open vertebrae and open skin in the back - literally a big hole in the back). They estimate that Spina Bifida happens in about 1 out of 10 000 people (depending on the country). They also estimate that Spina Bifida Occulta happens much, much more often - probably about 5-20% of people (different studies came to different conclusions). The far majority of people with Spina Bifida Occulta will never have any problems. Most won't even know they have it, except when it's picked up by chance on a x-ray.

A small few people though, will have not only Spina Bifida Occulta, but also the accompanying tethered cord. And most people with tethered cord will develop symptoms at some point. This is the goal of the untethering operation. To halt the inevitable progression of these symptoms. With the hope that some of the nerves would not have been damaged beyond recovery, so that there will be some improvement of the symptoms.

So there I stood next to my 7-year old daughter's hospital bed in the pediatric intensive care, rooted to that spot on the ground. The room started spinning around me and for the first time ever, I got tears in my eyes in front of a doctor. I've never cried in front of people if I can help it. Especially not about my babies, or in front of doctors. You may wonder why, there is certainly no shame to it. But for me, it's too intense, too personal, to degrade it by crying. Even when my baby was in NICU after birth, struggling for every breath and fighting to stay alive, I didn't cry. But here I stood, and the dr just told me Boeboe's cord wasn't tethered after all. Nothing I've ever experienced, came close to what I felt at that moment.

Because it was my fault. There's no 2 ways about it. I brought this down on my daughter. It's all on me. Nobody else can take the blame. I've put my daughter through unnecessary back surgery. Not cutting her tummy open. Or her thigh. Or her hand. Her BACK. I let them cut her back open. Cut the dura open. Expose the most sacred, sterile piece of her body. A direct link to her brain. All the functions that make her body move, react, work. I did that.

When I heard about my friend having Spina Bifida Occulta when Boeboe was age 4 or 5, I had sympathy, and for a fleeting moment thought "thank goodness that's not Boeboe's problem" - or is it? I couldn't shake the thought, so I googled it. And decided no, it can't be. So I let it slide. Then, when she was 6 I took her to a urologist. She turned Boeboe over on the table and then showed me a very flat indent in her back. Large, about 10cm's. It was triangular in shape. To me and all other doctors after this moment, it looked normal. But this urologist said - that looks like possible Spina Bifida. It was as if everything came together at that moment. As if it clicked in my brain. I just knew. It was as if I've been waiting for it. For that moment.

I went on the internet again and I started extensive researching into this condition. And with the help of one particular forum, I basically self diagnosed my daughter a few months later. I believed she had a tethered cord, even though x-rays showed she didn't have Spina Bifida Occulta. So I went to the orthopediac surgeon who mentioned doing an MRI earlier the year. And yes, he was keen, so it was ordered. Two months later, I stood with the report in my hand. It was negative. Her MRI was clean. No visible tethered cord.

I was flabbergasted. I was so certain!! Everything pointed to it! All her symptoms. So back to the drawing board I went, and I learned about Occult Tethered Cord. These days, some neurosurgeons believe that not all tethered cords are picked up on the MRI. They believe that sometimes it is hidden - thus, Occult Tethered Cord. And again...I knew. This is it!

Unfortunately, in my small country, this isn't something that happens to every 2nd person. Even having a tethered cord was rare. Occult tethered cord....well, you had to be one in thousands upon thousands. I read that about 5% of tethered cords are probably hidden. Since Tethered cord happens to about 1 in 10 000 people, it means about 5 in 100 000 must have an occult tethered cord. And even much, much less would have an occult tethered cord in the absence of Spina Bifida Occulta.

One neurologist told us "It would take a very brave neurosurgeon" (that would operate for tethered cord with no MRI evidence or Spina Bifida Occulta). Well, we found that neurosurgeon, because I was looking for him. I actively went out to search for a neurosurgeon that would believe in occult tethered cord. Because that is what I believed my daughter had. I have no medical training. I googled. Yes, there, I said it. I googled. Crucify me.

So when that brave neurosurgeon told me that he couldn't find a tethered cord inside her back, I was flattened. I felt like the worst mother ever. I felt like I must've had something like Munchousen by Proxy. That I wanted something to be wrong with my babygirl. That I was actively looking for someone to put my daughter through hell, because I got a kick out of it. I was the one that diagnosed her first. I was the one that pushed for the surgery. I was the one that told my husband what was wrong with our daughter. He knew I was a very hands-on mother, and he knew I was very good with researching (even on the internet). So he trusted me implicitly and never doubted me. So when I pushed for the operation, he willingly went along with it, even though it broke his heart to put his daughter through it.

At that moment, hearing that it was all in vain, I felt deflated. My self esteem was crushed. I wasn't the supposedly good mother, the good advocate for my daughter. I wasn't the good researcher, the good medical "student". I was wrong. I was WRONG. And it meant my daughter was in immense pain unnecessarily. It meant so much upheavel to everyone. The in-laws that had to come stay over to look after the boys. It meant my poor monkeyman, who had only just turned 3, had to be without his mommy. It meant my Boeboe had to miss school for no reason. All the preparation we went through. Everything was in vain. All that money we spent. The money our medical insurance spent. All in vain. So I cried. I got tears in my eyes for my poor daughter that bravely went through the operation, even though she was absolutely TERRIFIED before it. Because mommy said it will help her. And now, mommmy's going to have to say "sorry my baby, I was wrong, you won't be better off after this operation. It was all in vain."

I have never felt that huge a burden on my shoulders as at that moment. So much mother's-guilt. So much despair. There was nothing else for us. Nothing else we could try. This was our last chance. We had nothing left but accept that this will be Boeboe's life. Full-on incontinence with no cause and no cure. No miracle for us. I failed. I failed my daughter. I failed my husband. And I failed myself.

We decided that evening that we will not tell Boeboe the truth. That the operation was a big huge failure. We told her that the operation was over. And when she asked if the rubber band (what she called the filum) was cut, we didn't tell her no. We didn't lie, but we would talk around the question. Say something like "the operation is over, everything is fine, the dr did what he could". She believed it was a success from our words. We couldn't face telling her the truth so shortly after she was cut open.

So when we realised 3-4 days later, that after all, a miracle DID happen in that theatre, that the cord was indeed somehow tethered and now it was untethered after the operation, Boeboe believed it was because the filum was cut. We never corrected her. One day, I will explain it all to her. For now, she believes the dr fixed her and that makes her happy. You might think it's a placebo effect then. It is not. Both the neurosurgeon and her phsychologist assured us that it is impossible to have such major physical improvements at that age, without the cord having to be tethered and now being untethered. So yes, afterall...the cord was tethered. Most definitely so. And now it's untethered. After all those emotions I went through, it turned out that I wasn't wrong. That I didn't fail my daughter and husband. That I did good. That I was the best advocate for my daughter after all. That all those hours and hours of researching tethered cord, was worth it. I wasn't wrong. And my daughter benefitted from my beliefs. From my research. From me fighting to get this surgery for her. I didn't have to feel guilty anymore. I could feel proud. I could be proud. Of Boeboe, and of myself. I wasn't wrong. She DID have an occult tethered cord. What I WAS wrong about, is how very special Boeboe was. She wasn't one in a thousand. Or even just one in ten thousand that has a tethered cord. She wasn't even one in 100 000 that has an occult tethered cord with tight or fatty filum. No, she is one in a million, who had a tethered cord that was tethered to the dura at the S2-S4 vertebrae, without Spina Bifida Occulta present. My beautiful, vivacious, special daughter - I should've known, she was one in a million, indeed. :-)

Sisterly love!

Wait and see...

Don't you just hate that term? I do. :-( It riles me. But it's also an unavoidable part of life. I'm not a patient person. Far from it. So to sit back and wait, is soooo difficult to do. I read the stories of some mothers that are pregnant with spina bifida babies. And they're told to "wait and see". There's absolutely nothing else to tell them, because they really, literally, have to wait and see. Until their baby is born. Until the baby's back opening is closed. Until the baby starts cruising around. Until baby needs pottytraining. Wait. And. See.

Those poor poor parents. To wait for months, not knowing if your baby will be okay. What the extend of the damage might be. How baby's back will look. How much pain baby will be in after the operation. How long baby will be in the hospital. So many unknowns. So many fears and sadness. I can't imagine what those parents go through during their pregnancies. I heard many of the mommies say that pregnancy was the hardest part. I believe them.

I have my own waiting and seeing to do. I think all parents have to "wait and see". You don't know what the future holds. None of us knows if our children will reach adulthood safe and sound. But having a special needs child makes that "wait and see" just so much more difficult. There's so many added worries with a special needs child. Even with Mr N and his epilepsy, I don't worry as much as his dad does. His dad is worried if he'll be able to drive one day. With our appaling and sometimes non-existing public transport in SA, it's difficult to lead a full life if you can't drive.

But I digress. About the wait and see. Well, I have to wait and see if my youngest child might just develop symptoms of tethered cord. There's nothing much else I can do. Chances that she has a tethered cord is very, very slim. And I don't really believe that I should worry about it. So it's not going to influence my day to day life with her at the moment. But one day, when she's around age 2 or 3, she'll potty train. And I know I'm going to worry. Very much so. As I did and still do with Monkeyman. Pottytraining with Boeboe went so smooth. She caught on within 2 days. Two days of accidents! Just amazing. I was so proud and impressed and happy and relieved. Her symptoms of tethered cord wasn't clearcut. It wasn't like she had no control whatsoever. That would've been easier in some ways, because then the drs would've agreed with me sooner that something is wrong.

She had about 1 accident a week. And absolutely NO bowel accidents. For years. Only when she was 5, did I start to think there's something up. That means, for TWO YEARS we all thought her NORMAL. Yes, she had accidents, but that's NORMAL for children age 3 and 4, not true?!?! Mr N had accidents until age 4! And yes, Monkeyman still have accidents, both nr 1 and nr 2 accidents. And he's well on his way to age 5. Do I think he has tethered cord because of it? No. But does it contract my heart in fear everytime he does get an accident? Absolutely.

So theoretically, we won't know if Peanut has tethered cord until she's age 5 or so. Because she might have accidents after pottytraining, and she might not. And if she does, it might be normal and it might not be normal. Only at age 5 would we be able to say "yes, she's completely continent", or "no, she still has accidents". And diagnosing a tethered cord at age 5 only is risky. Very risky. I believe Boeboe would've been MUCH better off if she was operated before age 5, because her nr 2 accidents only started at age 4.5. So we might not have lost that function. But to operate a child for tethered cord because they have one accident a month?! So even if Peanut has accidents, would she get help in time?

It's easy to say "wait and see". But the logistics of what that might entail...it's difficult. We can wait and see. We have to. We don't have a choice. But what if we wait and see and it turns out too late to save bowel function like it did in Boeboe's case? What then? But alas, we don't have a choice. We can try to be proactive by getting an ultrasound, but I've read up on it and I'm not sure if it's worth it at this point. They miss so much with it in any case, will it really make me stop worrying? Boeboe's tethered cord wasn't even picked up on MRI. Chances that it could've been picked up on Ultrasound when she was a tiny baby...is slim to none.

Something interesting. I watched an old video of Boeboe when she was in NICU after birth. Her dad was filming her very first bath when she was about a week old. The nurse was drying her, helping me. And on the video you can hear me ask the nurse "what's this on her back, is it okay?" or something to that effect. I forgot about that, until I heard it on the video. Unfortunately it's not filmed, her back. But I do remember what bothered me. I noticed it a few days after birth when I was allowed to change her nappy. There was a tiny dimple or bump (can't remember precisely, I seem to remember it was a shallow dimple). But what bothered me and prompted me to ask, was the colouring of it. It was yellow. A shiny yellow. Clear as the sky. Very obvious. It wasn't a bruise or anything I've seen before. Just a small yellow mark on her back. The nurse of course dismissed it as nothing. So I ignored it. It must've faded with time, I don't know when. I'm pretty sure it wasn't there around age 1 or so anymore. But it does make one think, doesn't it?

So yes, we have to wait and see with Peanut. Her back might be fine, or maybe one day I'm going to say..."yes, her butt was crooked at birth but we hoped it meant nothing". But, let's hope that at age 5 I can rather say..."phew, thank goodness she's pottytrained and has no signs of tethered cord!!"

Something else I was thinking about. I wondered why is it that when a mom mentions her baby's birth defect, or a medical diagnoses on the internet forums, people always say "it'll be fine". They give virtual hugs and comfort, and then says "don't worry, baby will be fine". Is that what a mom wants to hear? Because I don't. So maybe I'm the exception to the rule here? When I say "my daughter has tethered cord" I want people to say "oh my word, I'm so very sorry. Poor little girl. Wish that didn't happen to her. Her life must be tough in some ways." I want people to commiserate, to understand, to support and to get it. I don't want to hear "she'll be fine". I know she'll be fine. That's not my worry! My worry is this and now. I want people to get it that at THIS moment, I'm worried. At THIS moment, I struggle. Or that my daughter is struggling. That we're in pain, at THIS moment. I know we'll be fine. I'm an optimis at heart. Even though I'm also a big realist. So even though my logic can tell me the probable (possibly bad) outcome, I'd still see the good afterwards. So when I complain, I don't want to hear that we WILL be fine ONE DAY. I want people to understand that at this moment, I need to hear how awful it is. How horrible. How horrendous. And then I can accept it, get my optimism together and move on. But alas, I guess I'm in the very minority of parents that wants to hear how awful things are when I complain. Seems like most people just want to hear "it will be fine".

Enough for one day. :-) My baby will be fine, that I know. Even if we have to wait and see for 5 years if she'll be fine with or without a tethered cord.

Three months!!

Ah, life with a newborn. Beautiful, joyous, difficult, wondrous, challenging, fun, busy, exciting, time-consuming.......sure you catch my drift! I'm having the time of my life, but it does leave me with little time to myself. Our babygirl is turning 3 months this week. It's going very well with her. She's growing beautifully, picking up weight like a champ and has little to no upsets. She'll give me a difficult time once a week for an hour or two, and the rest of the time she's sleeping, drinking, playing, staring around her and smiling. Too adorable.

It's also going well in the rest of the household. Mr N just goes his usual quiet way. Monkeyman (and me!) has had a cold, but fortunately none of the rest. Monkeyman also had stiffness and pain in his neck, which made me wonder a bit about viral meningitis. I read that symptoms is similar to a cold, and can easily be mistaken for just that. A number of people probably never even knew they had meningitis! I did ask the nurse to look at him, but he was already on the upturn again, and still had painmeds in him. So obviously she couldn't find much fault, LOL. She just told me to keep an eye on him but she wasn't worried.

Poor peanut had her 2nd set of vaccinations. She takes it well, especially with the Emla I put on to numb the area. Today the one injection site is a hard, red lump though. :-( Makes me sad to put her through it all. She's still so little!!

Boeboe is doing well. Naughty and throwing tantrums like the queen bee. Her newest thing is stamping her foot when she doesn't like what I have to say. Gosh, it drives me up the walls!! I'm starting to wonder if she's ever going to completely stop with tantrums? Who still throws tantrums at 9 years old?!?!

Shame, the poor thing fell on her scar a few days ago. On the windowsill! Next to her bed. Which makes me suspect jumping on the bed! Which she knows she's not allowed to do. But ya, that's Boeboe for you! We took her to the neurosurgeon a week ago for her check-up. He was very happy with how she's healing and the improvements she has. He wants to send her for another MRI in 2 years time, just to make sure she doesn't retether during the growth spurts girls have at that time. I also asked him about my baby that has a very very slight crooked butt. Unfortunately he seemed a bit clueless on that. No help at all. :-( It's frustrating at times to live in such a small country!! No previous experience from the neurosurgeon that I can draw on. I still don't know what to do or think about my baby. I think believing everything is fine is probably the best at this point. Just enjoying her and not worry that we'll be the extremely unlucky family to have TWO children with tethered cord. Because even though there's a genetic link, I think it is very rare for that to happen. Her chance to get epilepsy like her older brother is probably more likely than the tethered cord!!

Oh, that reminds me...Mr N is off his medication!!!!!! First time in 6 long long years. Longer on the meds than he was ever off them in his life. So far, so good. No seizures that we've noticed. His motion sickness (linked to seizures) is a bit worse though. And he does get the odd headache which we had to look out for. Unfortunately. But, it's still looking good I think. Let's hold thumbs! We see the neurologist again in about 6 months time and will then see if his EEG is clear.

So here's a few pics of the kids and me.

She begged for short hair, so I finally caved and cut it in a bob!