The Journey
By: Lisa Pittman
I have worked in Human Services for going on 12 years now, working primarily in the trenches of Child Protective Services as an investigator of child abuse and neglect. I have fought the good fight all hours of the day- the wee hours and nights included. I have seen many of the darker moments of humanity while in this profession. I have seen poverty in its most vivid colors in these homes. I have comforted crying children that must now leave their homes after enduring what no child should ever endure. I have taken them from their home and everything that they are used to, and dropped them off at group homes, therapeutic foster homes, regular foster homes etc. Leaving pieces of my heart with them as they must now navigate a totally new environment after having suffered in what was supposed to be a safe haven, what we call home. I have joined with these families in battling addiction, mental health, and the fight to sustain a life and the activities of daily living so that their children can remain in the home. My heart has been broken as I have watched these families unravel and lose these heartbreaking battles that life has thrown at them. These moments have tested my limits in ways that I cannot even articulate. Little did I know that the moment would arrive, that would test my all, my everything and change me as I had never been changed before. This moment arrived initially with the diagnosis, hitting us like a ton of emotionally confusing, question filled, ill-fitting to life bricks. What? Craniosynostosis? How do you even say that? Not to mention spelling….
Phase- Diagnosis. Our meager understand being that Craniosynostis occurs in the womb when the sutures in the head fuse prematurely. This premature fusion can inhibit brain growth, causing potential developmental problems. Also, the premature fusion causes the head to grow in a peculiar manner that can manifest as a head deformity. Our little boy’s sweet head did have an indention on top of his head, with protrusion of the forehead, not very noticeable with his wild and beautiful surfer boy hair. Also, he has absolutely zero developmental issues, in fact, just the opposite. The up teen million questions that we had were unmanageable by our primary doctor as we were referred to Neurosurgeons in Charlotte.
Phase -referral. The process of getting the referral faxed to the correct place to even get an appointment with a Neurosurgeon became unbelievably challenging (bear in mind, I have been in Human Services for years, having made tons of referrals in my life time- A Child Protective Service Investigator for Heaven’s sakes!!!) The referral from my primary physician, finally after arduous labor on behalf of myself and many others, landed at Carolina Neurosurgery and Spine. Finally, we had a date to go and see the Neurosurgeon in Charlotte. I will never forget that day.
Phase- Neurosurgeon #1 This particular Neurosurgeon basically surmised that this should have been caught before now, it is typically diagnosed in the early months of life and corrected with much less intensive surgery. This Neurosurgeon left us with the impression that the risk associated with doing surgery on a two year old at this point, would be too high. Ok!, so in many ways- this is a relief. We feel that we are not facing major surgery and that this having been medical recommendations, we are safe by standing by these recommendations. However, we leave this appointment with more appointments. Our next appointment being the plastic surgeon. Here we are, I am still working in Child Protective Services (applying for a CDSA position) and my husband teaches history at our local Middle School. Having already known of this diagnosis and remaining in the dark for several months, yes, we had started to feel better about things, and the stress had subsided quite a bit. This burden having been so heavy, now seems a little lighter, right?? That will change soon.
Phase- Plastic Surgeon. As we are waiting for our appointment with the plastic surgeon. I am noticing a two-year-old child, playing in the waiting area- I notice that my husband is noticing too. This child has a scar from ear to ear and his hair has been recently shaved. This child is playing with our two-year-old son, running laughing and having an altogether good time in the waiting area. I notice as well, that this two year old’s mother is looking at my son with a strange look in her eye. This lady would later shine a bright light for us on our Cranio road trip. Now, we are called back to the room where we will speak to the plastic surgeon. The room where, once again, we get the proverbial wind knocked out of us in the boxing arena of Craniosynostosis. Trust me the punches are hard, and to the heart. This part of the journey is hard to write about. I think it is hard, because it seemed as if we had been handed hope, and then it was like that hope evaporated- you see, we did not want to put our son through intensive surgery. I did not want to have to subject him to the pain, the process, the anesthesia, the hospital, the everything that comes with intensive surgery. I did not want to have to eclipse his whole summer, forget that, six months of his life with this dark cloud of surgery and the after effects. I so didn’t want him to suffer the trauma of surgery and have possible setbacks in any area of development. I did not want to bring our life as a family to a screeching halt so that the Craniosynostosis train could rage through and re-arrange our plans, our life……. I DID NOT WANT THAT. The plastic surgeon provided his recommendations that our two-year-old would need to have surgery to correct Saggital Craniosynostosis. The plastic surgeon stated that no one had ever, in the history of his 30 years, turned down having this surgery for their child….. WHAT?? You know in the movies, the scenes where everything is shown in slow motion and every minuscule, painful moment is magnified-picture that. Picture our little family crashing into the Cranio train and getting stuck on the rails in disbelief and shock. I turned my head to hide the tears that wanted to flow, after all, I have been trained to keep my emotions in check on the battlefield of child protective services-however the same rules do not apply when your own child is facing an impending mountain of suffering. Your baby, who you cherished and carried nine months in your body. Your baby, that you would move heaven and earth to protect. Your baby, who would now face a more intensive surgery than most people will face in their lifetimes at two years old. Your baby, who would be anesthetized for potentially 8 hours under the surgeon’s knife. Your baby, whose face the surgeons would peel down to get to the bone to extract and mold. Your baby…..We left the office spinning, our world was changing, like it or not.
Phase-Neurosurgeon #2. We attended an additional appointment with yet another Neurosurgeon in Charlotte, who’s recommendations paralleled those of the plastic surgeon. Put your safety straps on, because this ride, it’s happening. An excruciating waiting game ensued in which we were given potential time frames that were prolonged due to insurance purposes!!?! As if everything else didn’t burden us down enough?! After waiting and waiting, pushing and pushing for a surgery date around the barriers of coordinating plastic surgeon and neurosurgeon combined with insurance bologna- (Our original neurosurgeon broke his arm and had to be replaced by the way, all I can say is that it is a good thing that my husband and I can be fierce when necessary) We received a surgery date. Everything just got real.
Welcome to the Cranio Coaster, where the ride becomes more intense with each loop of belt. So if you’re thinking any type of reprieve comes after the hurricane of the diagnosis, figuring out that surgery is needed, and then actually getting that surgery scheduled- you would be sadly mistaken, in fact dead wrong. Once the surgery is scheduled, there is nothing left to focus on except what your baby will be facing shortly. That is when your mind kicks into overdrive thinking about the minute details and possible effects of everything….and I mean everything. I have to say that the burden just gets exponentially heavier the three weeks leading up to the established surgery date. Words simply cannot describe that time period in my life. I am going to leave it at that.
Phase Pre-Opt. The days arrived to do this. We had pre-opt on Tuesday and Surgery on Wednesday. Well, let me tell you, I ran all over Saint Levine’s Hospital with the help of some very courteous staff members. The reason for my adventures around the hospital being, that the process is not clearly explained and you are left to figure things out- and under duress, anxiety does funny things to ones thinking process. I will say, that It is also possible that we received instruction on this in the mail, that is that though. Two working parents and two young children make for hard times when a diagnosis such as this comes along. Back to the pre-opt- Does the blood work come first or pre-opt consultation with the anesthesiologist? Hmmm, I don’t know let me figure it out the hard way by making laps around the hospital to the different appointment rooms. I have to say, if one has to walk this journey- there is no better place than with exceptional staff of St Levines Hospital in Charlotte. We met with the anesthesiologist who explained the once again mind-bending, punch you in the gut risks associated with blood transfusion and risks associated with being “put under” Our sweet boy sailed through the bloodwork portion of this like a true champ, didn’t even cry or make a fuss. We had visited the plastic surgeon’s office before the hospital on Tuesday, which wrapped up the pre-opt chapter. Count down to 500 am in the morning, when we are instructed to be present for preparation for surgery to begin at 700am. Heaven help us, there is no turning back now.
Phase- Surgery That night, sleep of course was the elusive dream. We were up and getting ready at 400am to leave the hotel, thinking of it now puts my stomach in knots. Our GPS decided to act up on this morning of all mornings!! My husband, is fortunately a walking/talking GPS system. We made it to the hospital where my husband dropped us off at the hospital entrance. Our extended family, grandparents, aunts, etc. already there in full support of what were about to face. This would be obviously, the most difficult piece of our journey. The hospital graciously allowed our entire crew, extended family and all to gather in the room that Zeb would leave to go to the OR. The room where we would say good bye. I cry as I write this because it is the most heart wrenching moment in my life. The moment I would give my two-year-old over to face this mind bending surgery on his own. My Pastor from my Church arrived in time and we all held hands, plastic surgeon also present, as he prayed. The tears flowed from both sets of grandparents and all members in this room. I grabbed my son and held on for dear life, and then I let him go….. I I will leave it, because again there are no words.
We let go and we wait… another loop in the roller coaster that tests your limits…
This surgery that could have potentially last 7 to 8 hours, only took 5. Zeb lost 600 CC’s of blood, which I believe is approximately 2 pints. The Doctor’s explained that the head is vestibular and this is an extremely bloody surgery. My son received this amount of blood during the blood transfusion with no manifestation of complications from the transfusion. The moment arrived that we would get to see him… I knew that it would be hard to see him in the critical care unit. I had no idea just how hard. My husband I both broke down immediately upon seeing our baby with all the tubes attached to his body, the blood drainage tubes coming from his head. His head all bandaged with tubes, ports, etc. everywhere. It brought me down. I thought I was going to pass out and I have never passed out, ever. I had to sit down and put my head close to my knees to avoid either falling or throwing up. That was my beautiful baby underneath all the bandages and attached to all those tubes, he did begin to wake up with jerky movements and began moaning …. Ohhh those moments are dark for me. This is the moment when the limits that had been tested, pushed, and prodded- broke. No one really talks about just how much strength you really need. I guess because they know how difficult the journey is, and there is no other way than to just get through it. I am not sure that any amount of preparation would prepare you to see your little one in this shape. I had to leave and get myself together, because I was literally falling apart. Trust me, know I know what the brink of insanity looks like- I stood on the cliff and looked it in the face.
At last we were able to leave the critical care unit and go to a critical care room.
Once we were moved into the critical care room, the moment that I had been waiting for arrived. I was allowed to hold my sweet baby boy in my arms. All of his tubes and attachments remained, but we were given a reclining chair and the feeling that washed over me when I finally had him back in my arms again, is totally indescribable. My world could turn again, my very being could breath as I felt his sweet breath on my check and I knew then, that we would make it through this. There is nothing more special to me than the mother/child bond and having him in my arms was needless to say very therapeutic and healing, I believe, for the both of us. My child went through this like a true cranio warrior. One nurse had said that cranio babies do two things- they throw up and they cry. My little warrior did not. He did get minimally sick, but nothing like what was expected. He is very verbally expressive, and talked much more quickly than had been anticipated. He even smiled early on, even through two swollen eyes. I watched my two year old handle intensive skull surgery like a pro. My everything, my bright and shining star- oh how he shone with the strength of a champion. Another beautiful moment came for us when the tubes and IV finally were no longer necessary as his system regulated and he began moving around. It was a glorious and liberating moment- We were making it to the other side of surgery!! The third day after surgery seemed to be the most difficult, the swelling intensified on that day. We were able to move from the hard core pain meds to Tylenol and Motrin. We were granted an unexpected early release the evening before the morning we thought we would be discharged- The light just kept getting brighter and brighter. The nurses, the staff and everyone at this hospital had treated us so well and with kindness. I looked around at the nurse’s station before we left and became so emotional, the nurses seeming to understand said their goodbyes to us sweetly. We were ready to fly away and close this chapter. With great emotion, we took pictures outside of Levines Hospital to bid this moment in our lives goodbye- a stunningly magnificent, long awaited for goodbye. Our three-hour journey back home being marked by the most liberating, inspiring vibes of having faced down the goliath of a life-time. The hardest part of our journey had been traveled and now rested in the rear view mirror of life. I am going to leave that right there.
My point:
This journey has been the longest stretch of nine months in my entire life, and yes that is counting the six and a half years I spent in Child Protective Services. Navigating the system from referral to surgery was tedious, arduous, and at times excruciatingly frustrating. I want to share my journey because my eyes have been opened to just how important that any support can be with a child that has special needs. We did not make this most difficult journey alone. Our families (massive on both sides) our Church, our community came together in a beautiful mosaic of love and support that took our breath away. We received mind blowing amounts of monetary and emotional support- money, gas cards, gift cards, food etc. before and after the surgery. As we waited, there were over 25 members in that waiting room supporting our child and family. This is the support that I have mentioned all throughout this experience. We also had members from Craniosynostosis support groups, reaching out and supporting us in knowing what to expect. The support matters, any ounce of support that can be provided for a family walking a road such as this, is significant and makes a difference. I have been blessed with a large support system, but most of the families that we work with do not have this support system. Therefore our roles as service coordinators become that much more important. I had worked as a social worker for several years before this experience with tons of training, and this still presented as such a mammoth of a challenge. I think of these parents who navigate the system without the support and training, and I again I realize that what we do in providing support can make such a difference. I get to have a child that more than likely will need no further surgeries and present with no further needs, but for nine months I walked in the shoes of those who live this life on an ongoing basis. I now have tremendous respect for those parents and caregivers who face this life on a daily basis. This takes strength ,courage, perseverance, endurance… you name it. Going through this with my two year old, took everything I had to hold on at times. The endless support that we received throughout this experience, made such a difference in how we made it to the other side of Craniosynostosis surgery. Staying at St Levines Hospital also gave me a glimpse of children with severe needs. This also puts things rather quickly into perspective. We get to lay this down now and walk away as a family, changed from this experience. There are parents and caregivers who spend their entire lives meeting the special needs of their children- while their children live the lives of having special needs,. I am changed both as a mother and a human service worker, for the better. I am also excited to move forward with a renewed sense of passion in serving children and families. I will share this experience with my Craniosynostosis support group on Facebook that has members from all around the world, in order to help others as I was also helped by members of this group. I wanted to share my experience from the other side to express and emphasize the importance of what we do as a collective team to improve the lives of children and families. The support matters, it matters more than I can say. On that note I will stop saying and commence to doing this work that matters tremendously with a shout of WE DID IT!! We made it to the other side of the longest journey of a word ever- Craniosynostosis!!! I have traveled to the other side of what we do and returned with victorious rays of perspective that will hopefully light up both my professional and parenting path. Thank you for taking the time to read my story.
Zeb
