My husband and I were listening to the top pediatric neurosurgeon in the country discuss the details of our newborn son’s upcoming surgery. Our baby, Rafi, had been born with several birth defects which would need surgical intervention to correct over time, but one surgery was urgent. He was born with an encephalocele on the top of his head, a sac-like structure filled with cerebral spinal fluid. Because it was paper-thin, it was at risk of leaking, leaving my son’s brain vulnerable to infection.
It was clear the risks of pushing off surgery were far greater than the risks of doing it immediately. But that fact didn’t quell my anxiety. What parent wants to put their newborn through general anesthesia and surgery in an area very close to the brain?
When we saw our son’s birth defects for the first time we were shocked, and it took us a few days to process and accept his differences. But as time went on, we learned that as far as the encephalocele was concerned we were among the lucky ones. Encephaloceles are pretty rare, and the few children who are born with them often have actual brain inside them, causing neurological issues. Our son had a relatively small lesion with only fluid inside, and a hopeful prognosis for a normal life after surgery.
But we were still terrified. For days before the surgery, I held my baby close at all times, smothering him with love and attention. I couldn’t bear the thought of him being placed on a cold operating table, and his head being cut open and then sewed back together again. I tried hard not to think too much about the upcoming experience, and just went on autopilot, preparing my other children and our home for my absence during the surgery. My parents lived overseas, both of their professions were positions of day-to-day responsibility within the community and they couldn’t get away during this emotionally difficult time.
The preoperative day arrived and my husband and I were off with our baby to a distant hospital where the specialist would be performing the surgery. Our visit that day was to be routine; to have blood drawn, for Rafi to have a neurological evaluation before the surgery, and to receive general instructions for the following day. So I was unprepared for the emotional upheaval that actually took place.
It started when the resident pediatrician came to examine my baby and take blood. I’ve learned that very often resident doctors have not yet mastered the art of giving information and diagnoses in a delicate, sensitive fashion. When I mentioned a few concerns to the resident, such as that my baby’s foot seemed to curve in a bit more than normal, he said without a trace of sympathy, “No, it is not normal. Your son needs a full neurological assessment.”
“What could it mean?” I asked very hesitantly.
“I don’t know. It probably comes along with whatever syndrome your son has.”
“But my son doesn’t have any official diagnosis or syndrome. Other than these three birth defects, we were told he is okay.”
Without battling an eyelash, the resident continued, “He obviously has something. Look, you can see his muscles are very tense; that’s not normal either. He’ll need to be followed up by a neurologist.”
My husband and I exchanged worried glances. Thankfully, the neurologist we met next was friendly and put us at ease. I mentioned to him nonchalantly that my husband was concerned that Rafi wasn’t focusing or following objects yet and that he always seemed to be looking at a point in the distance, unfocused. “But I keep telling my husband that it is normal for his age still, right?” I concluded.
Could my baby also be blind, God forbid? The thought was too horrible to fathom.
“Let’s check it out,” the doctor said and immediately began examining Rafi’s focus and tracking ability, but quickly gave up. “Your husband is right. He’s not tracking or focusing at all. This is a bit concerning. He should be doing that at least a little by now, and I don’t know why he isn’t. I’m going to refer you to see the ophthalmologist tomorrow before surgery.”
My husband and I somehow managed to find our way out of the office while trying to process what we had just heard. Could my baby also be blind, God forbid? The thought was too horrible to fathom. One of Rafi’s birth defects was a missing ear, making him deaf on one side. It just couldn’t be possible that he was blind as well, could it? My husband and I didn’t even need to exchange words. Any passerby could tell from our faces that we were in complete turmoil trying to process this new horrible possibility.
Help Rafi See
It was late evening when we finally returned home and I was an emotional wreck. My baby was having neurosurgery the next morning. He was already deformed and disabled. He might also be blind. Until that afternoon I felt Rafi had so many issues, so many surgeries ahead of him, and so many therapies planned for his development. Now how I wished I could turn back the clock to “only” those issues without the fear of a blind baby as well.
“Hashem,” I implored as I drifted off to sleep, “I have no one to turn to but You. Please, be my mother and my father right now. Help me be strong for baby Rafi. Help his fast go smoothly. Help the surgery be successful and the recovery easy. And please, please, please, help Rafi see.”
The next morning we went to the hospital’s eye clinic before surgery. The ophthalmologist spent an unusually long time examining Rafi’s right eye, the same side as the missing ear. Just when I felt I couldn’t handle the suspense any longer, he finally put down his instrument. “He has a very small defect near his right eye,” the doctor began, “but that in and of itself should not affect his vision. Listen; at the level of his eye, everything looks okay. But I have no way to know what is going on at the level of the brain. Your baby already has some congenital anomalies, so it certainly makes it more suspicious. It is impossible for us to know now if your child can see or not. We will have to wait and watch how he develops,” he concluded.
I left the room feeling miserable. That wasn’t the answer I was hoping to hear, but I didn’t have time to think or process the doctor’s words, as my cell phone was vibrating continuously. It was the nurse from the surgical ward, with an urgent message: “Mrs. Burns! Hurry back to the ward. The orderly is here to take Rafi down to surgery!” We ran over to the ward and followed the orderly to the OR in the basement of the hospital.
The surgeon was very kind and understood how difficult it was for me to part with baby Rafi. I was allowed to carry Rafi all the way into the operating room and hold his hand until he fell asleep from the anesthesia. “Take good care of him,” I whispered to the surgical team as I was led out. With a very heavy heart, and eyes brimming with tears, I slowly walked back to the waiting area with my husband. The room was filled with family members of other patients, all waiting for updates about their relatives’ surgeries, and all eyes took note of our lone, empty stroller as we pushed it across the threshold. We joined the ranks of nervous, praying relatives in that waiting area, where time stood still and nothing apart from our sick loved one mattered.
I cried tears of shock, worry, and also gratitude as I held his tiny little hand.
Every once in a while the OR coordinator would pop in with updates about various patients. After two hours, she finally called our name.
Nothing could prepare me for what my precious infant would look like in those moments after surgery. His entire head was bandaged up in many layers of thick dressing, making him look like a mummy. Thankfully, his face was visible from his eyes downward, and he slept peacefully, unaware of the trauma he had just been through. I cried tears of shock, worry, and also gratitude as I held his tiny little hand, and eventually held him close to me.
I spent the night in the post-surgical ward with Rafi hooked up to a monitor. I was so thankful when, a few hours after surgery, Rafi nursed as usual. Incredibly, while Rafi was off schedule and slightly irritable, he didn’t seem to be in any type of distress or pain. The surgeon told us that young babies tolerate surgery well and he expected the recovery to go smoothly. But I was unprepared when the surgeon decided on an early release the following afternoon, a mere 24 hours after surgery!
Just before our discharge, I watched as the surgeon carefully cut off all the layers of bandages to reveal a gigantic and horrifying looking incision. I was shocked. Rafi’s encephalocele had been small, the size of a golf ball. Why did he need to have 40 plus stitches and an incision that covered most of his head? And how in the world would I care for such a wound myself at home?
We were given instructions to gently wash his wound and change his bandages daily, to dress him in clothing that didn’t need to go over his head, and to put him to sleep on his stomach. When we arrived home, a two and a half hour trip from the hospital, I noticed his incision was bleeding, and I freaked out. I called my father, an experienced pediatrician, at his clinic, something I rarely did. “Rafi’s incision is bleeding. I can’t believe they released me so early. I don’t know what I’m doing. Please come!”
My tears had the desired effect because two days later my parents arrived. My father checked the wound daily, helped me change bandages, and drove me to the followup visit. My mother was my moral support and kept me calm. Somehow, the day before they were due to leave, we miraculously got an appointment with a top pediatric ophthalmologist to finally get answers about Rafi’s vision. I knew I needed my parents with me if God forbid we received a bad diagnosis.
“Total hogwash!” she told me with a smile. “He can see just fine!”
The eye doctor was a peppy young woman with a big reputation. “Total hogwash!” she told me with a smile when I told her the concern about Rafi’s eyes. “He can see just fine! These doctors, they don’t even think when they speak to mothers. He’s not even three months old yet! And by the way, he’s starting to track anyway, but even if he wasn’t yet, there is no reason for concern!”
“I like her,” my father commented as we left her office.
“Me too!” I said happily. On the way home I joyfully bought a mobile for baby Rafi’s crib. “Only the best for my precious prince!” I told him as I tucked him into bed that night.
That surgery was only the first, and the scare with Rafi’s vision was only one of the many we’ve had over the first year of his life. As one kind doctor told us “Children write their own textbooks. I’m looking forward to reading his along with you.” We have come to learn that the ups and downs, the surprises, and the scares are all part of our journey of growing with baby Rafi. This might not be what I may have chosen for myself, but I trust it is part of God’s plan.