Symptoms

With Mira's conditions, surgeries, and other specialty things going on with her body, there is a long list of symptoms and precautions we have to look out for and special measures we have to take.
Holding her: With her back incision, from the myelomeningocele repair, she can't have any pressure on her back. So when you hold her, you have to support her head, while watching out for her head incisions, and support her hips without putting pressure on her back. It sounds a little difficult, but it's not that hard once you get used to it. She can be on her side, but you just have to make sure she doesn't roll onto her back at all.

Latex allergy: While she does not currently have a latex allergy, that we're aware of, spina bifida babies are prone to developing a latex allergy if they are exposed to latex. Limiting exposure as much as possible is the best shot she has at not developing the allergy. If she can make it to adulthood without developing the allergy, chances are she won't ever develop it. So for now, we have to treat her as if she's allergic to latex. All art supplies that aren't crayola contain latex. Crayons, markers, paints, etc. Balloons. Scratch off tickets. Clothing. Bedding. Baby mattresses. Anything that is rubber is latex. Anything adhesive that doesn't say "latex free" is latex, so bandaids and tape. Spandex means latex. Then there are foods that contain some of the same genetic make-up as the rubber plant, which is latex. Those foods are bananas, kiwis, avocados, bubble gum, and water chestnuts. Also, when she gets a little older and we go out to eat, our first task at any restaurant will be finding the manager, and asking "is your food prep done with latex gloves?" Anything labeled "hypoallergenic" by law is not allowed to contain latex, which is why we had to buy her a hypoallergenic baby mattress. Many baby mattresses are stuffed with foam that contains latex, or the cover of the mattress contains latex. One of the best ways to figure out what you can get for a child with a latex allergy is calling the manufacturers before you buy anything. Almost all products have a 1-800 number on them or on their packaging somewhere. Call the number before you buy the product. Heck, call the number while you're standing in the store, right there in the aisle, looking at the product in question, and ask if any part of that product contains latex. Doing your own research is the only way to be as thorough as possible. If limiting her exposure to latex is the only way to try and help her avoid another hurdle in life, that's what we'll do.

Club Foot: Her foot curves right in the center of her foot, which causes her skin to crease. We have to make sure those creases stay clean and dry because if they don't, it could cause skin damage. Since she has no sensation in her feet, she wouldn't be able to alert us to pain like other children can, so we have to check and make sure she doesn't have any sores since she wouldn't be able to tell if she did.

Lack of sensation: As I just explained, she can't alert us to harm done to her if a problem occurs on an area where she has no sensation. Lack of sensation doesn't mean lack of function. So say if she starts walking, because maybe she'll have the function to do so, but doesn't have sensation in her feet, so she can't feel them, and she steps on a piece of glass. Normally, you or I would acknowledge that we've stepped on a piece of glass, so we would take care of our wound. Mira won't be able to acknowledge that because she can't feel it. This means that when she's no longer a newborn, she is to be wearing protective footwear at all times. Hard-soled slippers in the house, actual shoes outside at all times, water shoes in the swimming pool, etc. if she's doing anything, she is to be wearing protection on her feet. We also have to check the footwear and her socks to make sure they're not causing harmful pressure points on her skin, or cutting off circulation to any areas.

Infection: Right now, she is open to the risk of infection all over her body. She has two incisions on her head (one from her temporary drain, and one from her shunt placement). She has one incision on her abdomen (from her shunt placement). She has one incision on her back (from her myelo repair). She is catheterized every four hours, leaving her at risk for infection every time she's cathed. And her belly button is currently at risk for infection because her umbilical cord stump is still on and she's confined to her belly at all times, so it hasn't been able to air out normally, causing it to bleed instead of dry up. The symptoms we have to always look for when it comes to infection is checking her incisions daily when we clean them. If we notice swelling, redness, or drainage of any kind, the incision could be infected. Also, of she has a fever or raise in temperature, we are to call her doctors immediately because this is usually the first sign of an infection. Any temp of 100.4 or higher means we need to call her doctor right now. After her incision heal, we would call if she has a temperature of 101.5 or higher, because then we would only be looking for infection caused by cathing.

Hydrocephalus/Shunt Malfunction: We have to check her shunt track regularly. You can run your fingers along her skin on her head and feel the tube of the shunt. If you can feel puffiness around the tube, that means the cerebral spinal fluid isn't draining through the tube like it should be. So we have to feel her shunt track all the time and just check to make sure we are feeling only the tubing under her skin. We also have to check her soft spot a lot. Her soft spot, when she's calm, should be flush with her skin and bouncy. If her soft spot is protruding or firm, it means spinal fluid is building up in her head again, so her shunt is not working properly. If the veins on her temples are really visible, this is a symptom of shunt malfunction. Also, if her cry becomes really high-pitched, that's also an indicator. Projectile vomiting (not just spitting up) is a symptom, along with loss of appetite and being lethargic. There is also something called "sun setting" which is a symptom of the hydrocephalus and the shunt not working. Sun setting is where her eyes aren't sitting in the middle of her eye sockets where they belong. Instead of her eyes being between her eye lids, her pupil won't be centered from top to bottom, it will instead be centered lower, to where her bottom eyelid is covering a part of the center of her eyes. So the area that makes up your eye color and your pupil, that circular area, will be drooped down to where it looks more like a sunset behind your bottom eyelid instead of bring up and centered where it belongs. These are all the symptoms of acknowledging that her hydrocephalus is bad, and her shunt is not working properly.

Chiari malformation type II: Only 5-30% of chiari malformations ever cause symptoms. But in case hers becomes asymptomatic, we need to know what to look for. A chiari malformation, if it causes problems, can effect the vocal cords, tongue movement, facial muscles, and respiratory function. The symptoms we'll be looking for includes: choking, coughing, gagging, milk coming out of the nose when eating, wheezing, and any other respiratory distress. While high-pitched cries are a sign of hydrocephalus, raspy cries are a sign of the chiari malformation. So if we notice that her little voice is sounding a lot deeper, that could mean her chiari malformation is compressing her vocal cords. Also, when she gets a little bit older, if we notice that she's constantly leaning her head back, that's usually a sign that her chiari malformation is causing compression. When they lean their head back, they are doing so to relieve the pressure it's causing, and we'll know that her chiari malformation is causing problems.

Tethered spinal cord: Its very likely that at some point she will have a tethered spinal cord because of the surgery she needed on her back. A tethered spinal cord is caused by the scarring that takes place in the spinal cavity. Symptoms of this are back pain, leg pain, changes in bowel/bladder function and movements, spine curvature/posture, and excessively turning her feet in and out. If her spinal cord becomes tethered, she will need surgery to fix it.

Belly confined: Having her umbilical cord not dry out properly is not the only complication of her being on her belly. Her abdominal incision from her shunt surgery is also really irritated because she's laying on it all the time. Suffocation is also a concern when you have a baby that is constantly face down, which is why we have her on a monitor, even here at home. The monitor is hooked up to her by a piece of foam that wraps around her body under her armpits. Beneath each armpit is a lead. One lead monitors her heart rate, and the other one monitors her breathing. If her heart gets too fast or too slow, the monitor goes off; and if she stops breathing or her breathing becomes labored, the monitor goes off. It has gone off a few times when she cries because, naturally, when you get upset and start screaming, your heart rate accelerates. This is a little inconvenient, considering that the monitor goes off because she's upset, but because the monitor is sounding, she gets more upset from the noise. It's a catch 22, but I certainly have more peace of mind when I am able to catch a nap here and there because I know that if anything is going in a bad direction, that monitor is loud enough to wake me.

Sensitivity: Children with spina bifida are often sensitive to many things. We already found out Mira has sensitive skin, so she's probably going to be avoiding a lot of irritant, allergens, and products throughout her lifetime. But spina bifida children are often also sensitive to sound and light. Because of this, I've been paying close attention to how she reacts to noise and lights, but so far I can't tell if she reacting in a normal baby way, or if she is really being caused discomfort. This is another thing that only time will tell.

Cathing: She has to be cathed every four hours because she doesn't have the ability to empty her bladder on her own. While I already breached on the risk of infection her bladder from having to subject it to catheters all the time, there is a reason it's necessary. If her bladder is not emptied when it needs to be, the kidneys (which send urine to the bladder) can get backed up. If Mira's bladder isn't emptied in a timely manner, then the bladder can get too full, causing urine to go back up the tubes that connect to the kidneys, reflux into the kidneys, and cause kidney damage. The last thing she needs is to have actual organ damage! To monitor this, she will get a VCUG regularly, which is a scan of the kidneys to make sure no refluxing had occurred. If no refluxing had happened, her kidneys will look smooth and firm. If she has begun refluxing into her kidneys, they will look wrinkly, which indicates damage.

Syrinx: Syrinx means a collection of spinal fluid along the spinal cord. If we suddenly notice that she seems to be in pain when moving, that she's not moving like she normally moves, or that she's actually losing the ability to move/function, then she might have a build up of spinal fluid along her spinal cord.

All of these symptoms, precautions, and special measures need to be watched/compensated for at all times. I'm going to use my favorite word now: overwhelming. It's overwhelming to think about all of the things that could go wrong. It's overwhelming to think about how it's up to you to notice it. It's overwhelming to think about what could happen if you don't catch it or take care of it. There is so much to look out for, and so much to monitor, and so much to notice. But she's still just a baby! Just like any other baby, she still needs cuddled and fed and loved. Sometimes it seems like she has to be treated like an experiment or project because of how much clinical care she needs and how much monitoring has to be done. But at the end of the day, she's just a baby that cuddles up to my chest, and burps over my shoulder. She's a beautiful little bundle of joy, and I don't want to miss the small things in her life because I was too busy fretting over the possible big things that may or may not happen. So while I will monitor her and make sure to pay attention to any subtle clues that something may be wrong, I'm still going to appreciate the little moments with my baby, because those are the moments that matter most and shape our lives.