During my second year of pediatric residency, I was rounding in the newborn nursery when I got a call from my husband, C.W. His mother was having surgery that morning, and they had unexpectedly found small tumors spread throughout her abdomen. While driving to the hospital, I called my own mother and explained the situation through my tears. We feared the worst, and my recurring feeling was guilt for having not had a much desired grandchild yet. My mother-in-law likes to claim credit for our relationship in the first place. She had picked me out at a football party while I was in high school and told my now husband that he needed to ask me out. It didn't take us long to figure out that this was a forever kind of love. It didn't take her long to start hinting for grandchildren. As the days went on, we learned that her diagnosis was carcinoid tumors. This meant a much better prognosis than other kinds of cancer, but we still knew each day was precious. We adjusted our plans to wait until after residency for kids and were quickly able to get pregnant.
The pregnancy went on without a hitch until our 20 week ultrasound. We arrived, expecting the news of the day to be whether we would be shopping for blue or pink. When the scanning took longer than expected, I started to feel the prickle of worry creeping in. The tech said it would just be a few minutes while the doctor looked over the images. When the doctor finally came in, he continued the scanning in silence. I mentioned to him that I was a pediatric resident and was thinking of all the horrible things that could be wrong, "so please just tell me it's fine and go on scanning." He didn't say it was fine. He told us that he saw several "soft signs" to raise concern for a chromosomal abnormality. He gave us the option to follow up later or proceed with an amniocentesis. I never thought I would choose to have this test, but the unknown was too much to bear. We drove home in a fog and found ourselves laying on our bed crying without words. It was to be the first of many bad news days.
A couple of days later, on my birthday, I got the call with initial results from the amniocentesis that were NORMAL!! We were so relieved and thought that horrible chapter was behind us. The final results would come in a few more days, but "those are rarely abnormal if the initial test is good". We continued planning our blue and yellow nursery and shopping for footballs.
I had returned to work and was finishing up some notes at the computer in our resident lounge. My phone rang, and it was the high risk OB who had done the ultrasound. He had the results of the amniocentesis and they showed an unbalanced chromosomal translocation. We didn't yet know which chromosomes were involved or what this meant for the baby. The walls started closing in. The sobs were uncontrollable. I stumbled to the Chief Resident's office to tell them I needed to leave. I called my husband out of class to have him come pick me up. We headed home for our second evening of crying without words.
We returned to the high risk OB office the following day to have our blood drawn to see if one of us was a carrier of the translocation. Every visit seemed to bring more bad news. Our results showed that we did carry a balanced translocation which only causes problems when it's inherited in an unbalanced way. (The baby had a little extra of one chromosome and not enough of another). That exact translocation was not documented anywhere in the medical literature, so we really didn't know what to expect. The bits of information we did have indicated that he would likely have a syndrome that caused body overgrowth, airway problems, blood sugar problems, increased risk for cancer, and the part I couldn't say without tears, mental retardation. I found myself wishing he could be missing a limb, anything but that last part. I think it was the overwhelming aspect of not knowing what we could really expect; not even knowing if he would look like other "normal" babies. We didn't know if we could ever have kids who wouldn't be affected with this translocation.
The days and weeks crept by. I felt surrounded by other pregnant friends who were expecting healthy, happy babies. My own belly was growing at an abnormal pace due to the overgrowth syndrome and an excess of fluid. I felt like everything about me was now "abnormal". All through residency I had struggled with the issue of bad things happening to good people. Why did it seem that the nicest families ended up with the worst prognoses? Now it was happening to me. The emotional and physical stress finally got the best of me and at 32 weeks gestation, I called my residency program director to say I needed to start my maternity leave. Baby Jackson must have been listening, because later that night, my water broke. I remember saying over and over again, "he's not ready yet." Maybe it was me who wasn't ready, but I didn't get a choice in that matter.
The days in the NICU were full of highs and lows. We initially thought we had gotten lucky because he seemed to be much less affected than we expected. Unfortunately as the weeks and months passed, we realized our luck didn't last. After two smaller surgeries for his airway had failed, and he was unable to stay off of the ventilator, I hesitantly signed consent for my baby to get a tracheostomy. For me, it was probably most upsetting, because it carried a stigma of a child who would never be "normal". However, we knew he needed it and hoped it would allow us to finally bring him home. We had spent the first month of his life sleeping in a resident call room in the hospital because we couldn't bear to leave without him. On Thanksgiving, we were finally convinced to start coming home at night while still spending all of our days in the NICU.
By Christmas, it was clear that his progress was stopping. He gradually began having complications with every major organ system. We had consults from cardiology, GI, infectious disease, pulmonology, urology, nephrology, pediatric surgery, endocrinology, genetics, ENT and oncology. He stopped tolerating feedings, his kidneys began to fail, he began having seizures, and worst of all, he would scream in pain for most of the day. After six trips to the operating room and numerous painful and discouraging discussions with the doctors taking care of him, we began to realize that we weren't adding any quality to his life by prolonging it. It felt like an out of body experience when I signed his "Do Not Resuscitate" orders. Our families continued to be our rock of support through the next days as we waited for the end. As he continued in his suffering, we were forced to make a decision we had at one time felt was unthinkable. I held my son in my arms with my family encircling us. My dad read scripture, then I gave permission for them to stop the ventilator. I whispered in his ear, "It's going to be so much better, I promise." as my precious child left us.
Jackson William Cook lived on this earth for 110 days. He changed my life forever. He made me a better mother, doctor, person. He was an organ and tissue donor. He made me value and admire the differences in us all. He made me realize "normal" is not such an ideal. He taught me that every day is precious and nothing is guaranteed. His translocation has now been documented and may be able to help other families who are searching for information like we were. I have a whole new perspective on heaven and can't wait to hold him and kiss his mommy spot that I claimed on his left cheek that is mine alone.
