Victor had only been working for an hour or so when Nikki walked in dressed in a smart bright yellow suit and black skirt with black pumps.
At the sound of high heels on the marble floor, Victor looked up from the file he’d been reading to find Nikki standing in front of him smiling.
“This is a surprise. What are you doing here?” Victor asked taking in the sight of his beautiful wife.
Then, as he remembered all that had happened since he’d told her the truth about his health problems, he asked, “I would’ve thought you wouldn’t want to talk to me, let alone pay me a visit. Why are you in such a good mood? This is the last thing I would’ve expected after I moved out and didn’t tell you why or where I was going.”
“The doctor’s appointment is today, remember?” Nikki asked with a good natured, enthusiastic smile. “We finally get to have some of our questions answered. We’ll finally get to know what we’re dealing with.
And as for what’s going on between us, I’m looking on the bright side for now. I’m taking things one day at a time. There’s still a chance for us. I know there is, so you take all the time you need, I’m not going anywhere.” The confidence he heard ringing clear in her voice made him smile in spite of himself and his own intense pain.
“Oh yeah, thank you for reminding me. I can’t believe I forgot.”
“I kind of thought so. You’ve had a lot on your mind.”
“Ready to go?”
With their arms linked, they headed to the doctor’s office.
As Nikki waited as patiently as possible in the doctor’s office, Victor paced impatiently.
“Victor, it hasn’t been that long, try to relax,” Nikki soothed as she walked up to him and put a hand on his shoulder.
Touched at her concern for him, Victor turned towards her and smiled before kissing her forehead.
“Sorry I’m late, I was with another patient,” Dr. Thompson said as she walked in and closed the door behind her.
“Hi Doctor Thompson.”
“Hi, Nikki, how are you doing?” Dr. Thompson asked carefully.
“I’m alright, hanging in,” Nikki answered honestly.
“That’s good. That’s half the battle,” Dr. Thompson told her with a reassuring smile.
“Okay, let’s get to the ultrasound and see how things look, shall we?”
“Okay,” Nikki whispered, a little unsure.
“Well, everything looks good.”
“Really? Nothing else showed up on the ultrasound?” Nikki asked needing reassurance.
“Everything looks just fine, Nikki. I know it’s hard, but try to relax.”
“Dr. Thompson is right, that’s the best thing that you can do is to just relax. Focus on the positives here. Everything looks good,” Victor reasoned softly.
“Um, Dr. Thompson, we have a few questions we’d like to ask you, if you don’t mind,” Nikki began nervously.
“Of course, why don’t you get dressed and I’ll meet you in my office.”
“We’ve been doing some research.”
“I wouldn’t expect anything less,” Dr. Thompson replied calmly.
“Well, the possibilities of how all this could turn out and the details of this birth defect are pretty frightening.”
“Nikki, I understand that. Any parent in your position would be feeling the same way, believe me it’s understandable. It’s completely natural. But, it’s imperative that you keep calm and take things as they come. Take this one day at a time. That’s really the best thing you can do right now.”
“I know, but that’s much easier said than done.” Nikki rose to pace the office.
“Nikki, come on, come and sit down,” Victor said as he took her hand and lead her back to her seat in front of Dr. Thompson’s desk.
“What else can I tell you? What else do you want to know?” Dr. Thompson asked helpfully.
“Why does the United States have such a high prevalent rate? Why is it one of the highest world-wide, the highest in North America?” Nikki asked, unsure she wanted to know the answer.
“Well, I wish I had a definitive answer for you. There is a lot of research being done on this and other birth defects. It may have something to do with the pollution that’s being put into our environment; it may have nothing to do with that at all. We really don’t know. I’m sorry I don’t have a better answer, Nikki.”
“The stats we found don’t seem to suggest it’s getting any better either,” Nikki said half to herself.
“I know it’s hard to believe, but many, many children born with spina bifida survive and go on to live relatively healthy, productive lives.”
“Really?” Nikki asked, smiling a little for the first time since they’d gotten the news at being given the first tiny bit of hope in a long time.
“Yes, it all depends how severe the spina bifida is, there are varying degrees,” Dr. Thompson answered with a comforting smile.
“Okay, so, the incomplete closures in the vertebral arches of the spine that result in malformations of the spinal cord and characterize spina bifida, how severe are they, generally? What about the spinal membranes and spinal cord protruding through the cleft? How does that get rectified?” Nikki peppered Dr. Thompson with questions, scarcely giving her time to absorb the first question before she asked another one.
Victor cautiously spoke up with a question of his own. “What is hydrocephalus and how serious is it?”
“Basically, it’s a condition where there is excess cerebral spinal fluid that finds its way into the brain and causes swelling.”
Nikki’s jaw dropped and her eyes widened in disbelief as she whispered, “What? You can’t be serious? Swelling in the brain? Please tell me there’s something that can be done.”
“Yes, there is. In the event that this occurs, a neurosurgeon places a drainage tube in the brain to drain the excess fluid from the brain. It usually gets diverted or emptied into the abdomen.”
“I read that the birth defect likely results from interaction of several genes and environmental factors, is that true?” Victor asked, listening intently.
“Yes, there is some evidence to suggest environment, along with other things is a factor in developing spina bifida.”
“Why don’t they know what causes most of the human cases? How can they not know?” Nikki asked bitterly, somewhat angrily.
“Nikki, I understand why you’re frustrated, but this is a complex birth defect and we just don’t have all that much information on it yet. We don’t know that much about the human body. It will take time, but we are getting closer,” Dr. Thompson answered honestly while trying to give her some hope.
“I’m pretty sure I already know what the answer will be, but I’m going to ask this anyway and I want the truth. If my diet had been better before we decided to start trying to have a baby, if I had paid more attention to what I was eating, to what I was drinking and how much rest I was getting; if I had paid more attention to everything I should have been paying attention to, would this still be happening?”
“Nikki, I really can’t give you an answer. Research does indicate that diet and other factors, like intake of folic acid and vitamin c play a key role. But, I don’t think it does any good for anybody to speculate. The best thing we can do is deal with the situation the best way we know how and take things one day at a time.”
“I know, but it isn’t easy. I read that spina bifida happens by the fourth week of pregnancy, is that true?”
“Yes, that’s why it’s so critical for couples trying to get pregnant to take folic acid daily for at least six months to a year before trying to get pregnant.”
“Both the husband and the wife?” Victor asked curious.
“We know the lumbar nerves control muscles in the hip, leg, knee and foot, and help to keep the body upright. And, we also know that the sacral nerves control some of the muscles in the feet, bowel and bladder and the ability to have an erection, along with that, we know that some degree of impairment can be expected in these areas.”
“Yes, Victor, what’s your question, Nikki?” Dr. Thompson asked a little confused.
“How severe is the damage in these areas?”
“Again, it varies depending on each individual case.”
“What about paralysis, absence of skin sensation, incontinence and spine and limb problems depending on the severity and location of the lesion damage on the spine? What are the chances of that?” Nikki asked seriously.
“That’s not clear until after the baby is born. After she is born, she’ll be closely monitored for signs of hydrocephalus or any other complications that could arise.”
Nikki nodded silently, even though she wasn’t satisfied, there was nothing she could do but sit and listen to what the doctor had to say.
“What about cognitive problems?” Victor asked not liking what he was hearing one bit! ‘There are far too many unknowns here! Why doesn’t anybody know what we’re dealing with? Damn it, doesn’t anybody know what they’re doing here?’
“That’s another thing that doesn’t become clear until sometime after birth,” Dr. Thompson replied honestly, apologetically.
“Most babies born with this will need surgeries to correct spinal, foot or leg problems, shunt surgery to drain fluid from the brain, application of techniques to control bowel function and braces and other equipment to help with walking.”
“Yes, that’s right.”
“So, how successful is all that?”
“Generally, if the intervention is done quickly enough, the success rate is quite high,” Dr. Thompson replied confidently.
“That sounds encouraging,” Nikki said smiling once again at the second piece of good news. Her smile faded as she said softly, “I still can’t help thinking I could’ve prevented this somehow, but I didn’t.”
“Nikki, there’s nothing you could’ve done to prevent this. There’s no way you could’ve known about this,” Dr. Thompson reiterated firmly.
“What makes latex such a problem for children with spina bifida?”
“That’s not clear yet. It may have something to do with how often and how severe the exposure to latex is and the immune system, but that’s just a hypothesis of mine.”
“The allergies to it can be mild to life threatening, so how do we know if it=s going to be mild or something life threatening?” Victor asked.
“That is something that is completely unpredictable. The one thing we do know is the more frequently children with spina bifida are exposed to latex, the greater the chances of them developing allergies to it.”
“What about finding a cure for this? How close are you?” Nikki asked hopefully.
“We’re getting closer every day. We’re not giving up, Nikki, neither should you.”
“Don’t worry, I’m not!” Nikki replied determinedly, smiling genuinely without feeling the least bit guarded for the first time since she’d walked into the office.
“I know that they operate as soon as possible on the back to prevent further drying and damage of nervous tissue and infection, and that skin grafts are needed. How painful is recovery?”
“We try to make it as painless as possible, the baby is obviously sedated before the operation begins. After the surgery is complete, the baby is brought into recovery and monitored closely to make sure that he or she is coming out of the effects of the anaesthetic used during the operation and monitored closely for any other signs of pain or discomfort. In the event that he or she is in a lot of pain, pain medication is then administered through the iv that was put in before the surgery.”
“I guess the best thing, the only thing we can do is wait and see what happens,” Victor said with a sigh.
“Yes, that’s exactly what’s best for now.”
“I just wish we knew more, it seems like despite all the technology and the advancements we’ve made, we’re still no closer to finding out what we really need to know-what causes it and more importantly what we can do to cure this birth defect!”
“Nikki, Dr. Thompson is trying to help.”
“Victor, it’s alright, she’s obviously very frustrated and angry. It’s perfectly understandable and normal for both of you to feel the way you do.”
“Thank you, Dr. Thompson, we won’t take up any more of your time,” Nikki said as she headed towards the door.
Then, turning back towards Victor, who still sat in front of Dr. Thompson’s desk, she asked, “Victor, aren’t you coming?”
“I’ll be there in a minute, I still have a few things I want to discuss with the doctor,” Victor replied, trying to reassure her.
Satisfied, Nikki left the office, closing the door quietly behind her.
Once in the hall, she took a moment to lean against the wall and try to regain her strength as she tried to process everything she’d just been told. Unable to make much sense of it and overwhelmed by the pain and uncertainty surrounding her child’s birth, her very life, she silently, heartbrokenly let her hurt, bitter tears fall.