Such a simple statement, that you hear your entire life, ‘Hindsight is always 20/20.’ Yet, as you grow older you realize and succumb to the validity of this statement.
Nathaniel Sweger came into this world on his due date, July 11, 2009. I so badly wanted him to be born on his due date. As a boy growing up, who wouldn’t want a birthday of 7/11. Not to mention that endless amount of free Slurpee’s such child would have the undeniable privilege of consuming in his sweet life. It was his birth right after all. Twelve hours and two failed epidurals, resulted in Nathan being born emergency c-section.
When Nathan was born he had an unusually large shaped head. My husband and I attributed this fact, to the notion that Nathan was virtually my mini me. If you placed my baby picture, next to his you could have sworn we were twins. I, in turn, took a very strong resemblance to my father. My father also has a very large head, a fact that I truly was not made aware of until Nathan was born. I never thought of my father having a larger than average head, because it was all I knew of him. He would later share with me, about how he was picked on in school because of his head size and would have to wear larger ball caps during his teenage years. All of this was new, yet at the same time irrelevant to me. We had a perfectly happy, healthy, baby boy. Life was new and exciting and we were thrilled to start our new adventure as a family of three.
Nathan had a major problem with acid reflux and no matter what we would try to do to cure what ailed him, he would constantly and consistently spit up after every feeding. Nathan was given a prescription for Prilosec, but still consistently had trouble with spitting up. It was at a doctor’s visit for a follow up to see how the Prilosec was working, that Dr. Willert, (Nathan’s pediatrician), threw out the word hydrocephalus. She was feeling the frontal portion of Nathan’s forehead where a ridge had presented itself. She stated that she wasn’t concerned, but it was definitely something she wanted to get checked out. The following day, an appointment was made for an ultrasound of Nathan’s brain. We were waiting for the results of the ultrasound, when Nathan for some reason became absolutely inconsolable. He presented a high pitch, deafening cry that was not at all normal for him. Try as we must, we did our best to soothe him to absolutely no avail. We spoke with Dr. Willert’s nurse who instructed us to take Nathan to the ER, explain what Nathan’s history was and the possibility of hydrocephalus. The pediatric attending ordered a CT scan of Nathan’s head. At 13 weeks old, I felt like my baby was the equivalent of a lab rat. Instinctively I knew something was wrong with my baby, but couldn’t put my finger on what.
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| A visitor's pass, I never wanted to receive. |
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| Brian and Nathan as we waited at Sacred Heart's ER. Nathan’s CT came back ‘normal.’ There were no signs of hydrocephalus or any other abnormality and we were told to go home and enjoy our little boy. Thankfully, our pediatrician wanted to pursue Nathan’s abnormal head size a little further and sent us to the only pediatric neurosurgeon in our small city. She also ordered for us to be sent to a pediatric neurologist and a geneticist in a following town. More pokes and prods later, Nathan was given the diagnosis of familial macrocephaly, (familial – family, macro – large, cephaly – head). We were basically told that Nathan had a large head because of his family. Though some fluid did present itself on the frontal lobes of the brain, it was nothing to concern ourselves over. ‘As long as he continues to stay on task developmentally, he should be fine.’ We breathed a sigh of relief and it all seemed so easy. |
Fast forward two years and Nathan is exactly where he should be developmentally. Having my bachelor’s degree in elementary education, I prided myself on constantly being aware and up to date with Nathan’s milestones. It was my goal to be sure that every milestone was achieved, if not surpassed. We had planned on Nathan starting a part time preschool program. Once again, having my educational background, I wanted to be sure that Nathan was always where he needed to be not only developmentally, but also socially and cognitively as well. November 2011, I took Nathan to have a physical, so that he could start part time preschool in January. Like a movie reel, I will never forget the next passing moments.
‘I think his sutures are fused.’ She just walked in the door. Nathan’s medical record is still in her hand, why is she so quick to jump to such a serious diagnosis? She placed Nathan’s medical record on her desk, felt Nathan’s forehead and a third of the way back, she found another ridge that had recently presented itself. ‘I wouldn’t be surprised,’ I remember muttering, but she seemed sure and astute in her diagnosis and never once, have I ever questioned her. And never will I.
We met once again, with the only pediatric neurosurgeon in our small city on Tuesday, January 17. What this pediatric neurosurgeon severely lacks in bedside manor and tact, she more than makes up for in her education. ‘She’s the best of the best’ I’ve been told, but we, as a family were less than impressed with her. She felt my head, my husbands and in less than 15 minutes stated and assured us that Nathan’s sutures were not fused. Yes, he had some ridges that presented themselves, but Nathan did not have the diagnosis of craniosynostosis. My mother’s bachelor of nursing and my intuition, told me different. Once again, I knew that something was wrong with our baby. Assuming the worst and hoping for the best, I guess can be described as a character attribute, but it defined who I was in that exam room to a t. The pediatric neurosurgeon did order a 3D CT scan, just to be sure, but was very quick to reassure us that Nathan did not have craniosynostosis.
A 3D CT scan is the only sure way to diagnosis craniosynostosis. Nathan’s CT was scheduled for the following Friday, January 20. The pediatric neurosurgeon assured us that she would call us Friday with the results of the CT scan, once again assuring us that all would be found well with our Sweet Boy, as his Mimi calls him. I had great trepidation about Nathan’s CT scan for a number of reasons. One being that Nathan would have to be sedated to perform the CT, because of the sedation he would not be allowed to eat or drink anything after midnight. I knew he would be starving when he finally awoke from his scan. Secondly, I was 24 weeks pregnant and I knew I wouldn’t be able to follow him back to the room when he fell asleep. Knowing that it would only be his Daddy’s face he would see when he fell asleep and not both of us, was very difficult for me. The very standard, simple, routine procedure went smoothly and Nathan made it through recovery just fine. We were in and out of the hospital one minute shy of an hour.
Following up with a second opinion on Nathan’s diagnosis wasn’t even an option for us. We wanted more than what the pediatric neurosurgeon was already so profoundly astute of. I requested a copy of Nathan’s CT scan and when we got home I started burning CD copies to send to other doctor’s. I have no medicinal background, but looking at the CT images, I knew what I was looking at. Nathan’s skull was one, solid complete piece. ‘You’re not a doctor and you don’t know what you’re looking at,’ raced through my mind as I absolved myself to sit and wait for the pediatric neurosurgeon’s call. At 3:30 pm, I called her office and was informed there was a family emergency and that she had to fly to Michigan to be with her father. It would be at least Monday or Tuesday, before we could expect to hear from her.
Having the foresight to know this was going to be a fight, I went ahead and scheduled an appointment with our amazing pediatrician, Dr. Willert, and requested that she go ahead and make a second opinion referral for us. We explained to Dr. Willert, how the appointment the previous Tuesday went and made it clear as crystal to her, that we weren’t taking her opinion and just going with it. Dr. Willert, sat with us and stated over and over that she hoped it wasn’t cranio, that she hoped he wouldn’t have to go through surgery and didn’t want Nathan to have to travel that road, but at the same time was in complete agreement that something was amiss about the ridges on Nathan’s head. Dr. Willert stated that she would have her nurse work on the second referral, but that she would be back. We waited an hour for her return and that hour changed everything.
In the hour that we waited for Dr. Willert to return, the pediatric neurosurgeon’s office called. We had an appointment the following Tuesday, January 24 at 1:15 pm. I walked to update Dr. Willert’s nurse on our pending appointment and something in her face just didn’t look right. Dr. Willert, finally returned to our exam room, with a completely new and different demeanor. She didn’t have to say it, we already knew. Nathan had craniosynostosis. She sat in her swivel chair, placed Nathan on her lap and just held him. It was her, who made the call to the pediatric neurosurgeon’s office to be updated on the results of Nathan’s CT. And it was her, who made the pediatric neurosurgeon’s office call me. While she had other patients, she sat with my mother and I, and asked us how we were doing, how we were feeling, was there anything she could do…she went above and beyond that day and she still wanted to know what else she could do. It amazed me. I was so grateful I was with both my mother and Dr. Willert when I found out about Nathan’s diagnosis. I wouldn’t have handled it as well coming from the pediatric neurosurgeon.
Walking to my car, I reminded myself ‘place one foot in front of the other, breathe, place one foot in front of the other, breathe.’ The cocktail of not being able to breathe and complete numbness, was one I had never had before and hoped I would never be served again. I waited to tell my husband the news, until he got home. I wouldn’t want the news that my son was going to have to have brain surgery, dropped on me while I was at work. I wasn’t going to do that to him.
Tuesday, January 24 came and we made our way to the pediatric neurosurgeon’s office. I can’t say how grateful I was that I already knew the outcome of Nathan’s CT. There are four types of craniosynostosis, depending on which sutures are fused. Already knowing that Nathan had cranio, we briefed ourselves on which sutures had which title. Completely ready, we prepared ourselves for which specific type of cranio Nathan had. When the pediatric neurosurgeon walked in the door, all she said was ‘he’s complete.’ My comprehension of what she was trying to relay was obviously lacking, so I asked, ‘Which type of cranio does he have?’ She looked at me as if she just discussed how beautiful of a day it was and said, ‘He has all of them. He’s complete.’ Pure and simple, matter of fact, straight to the point and if compassion was water, she was on fire. She went on to explain how we would have to travel to have the surgery Nathan would need done and we were referred to Dr. Jeffrey Blount at UAB Children’s.
Previously, I had researched Dr. Jeffrey Blount as a possible person to see for a second opinion. I had also called his office to see when the quickest we could get in for a second opinion was. I was quickly told March. When we left the pediatric neurosurgeon’s office, we were told that they would be in contact with Dr. Blount’s office and to expect a call from them by Friday, January 27. Wednesday, January 25 we were notified that we would be meeting with Dr. Blount, (pediatric neurosurgeon), and Dr. Grant, (pediatric craniofacial), on Friday, February 3. We were also told, to expect surgery to be performed sometime between, Monday, Feburary 6 – Friday, February 10. So much for March.
When a baby is born, the plates of the skull over lap each other, so the baby can make their way through the birth canal. Nathan’s plates couldn’t overlap, thus he stalled during labor which equated into me having an emergency c-section. Hindsight is always 20/20.
