Mikaela Hope's Story
Each of us has one hero whom we can look up to during the course of our lives. It may be a great historical figure or a current celebrity. It may even be someone we know from our everyday lives. I had the privilege of meeting my hero one chilly November morning back in 2008. That first wonderful moment when I held my newborn daughter was in the NICU at Dartmouth Hitchcock Medical Center. As I gazed lovingly into her shining blue eyes and gently stroked the downy tuft of blonde hair on top of her head, I never imagined that she was destined to become my hero.
Her story began in August of 2008, when I was about five months pregnant with her. An ultrasound discovered an “abnormality.” She had an enlarged abdominal area, with no reasonable explanation for what could possibly be wrong. The next four months were a blur of doctors, specialists, tests, ultrasounds, and more tests. At one point I was told, in the most clinical way possible, that my baby was going to die very soon after the birth. I remember that day quite clearly. It was a brutally hot summer afternoon, yet after receiving this devastating news I immediately went home, crawled into bed, deep under the covers, and cried myself to sleep. I awoke the next day to another scorcher and went about the business of distancing myself emotionally from my pregnancy and from my baby. If I could do that, maybe it wouldn’t hurt so much when I lost her. I put away the small, pink baby things that I had already purchased and tried to forget that I was even pregnant at all – not an easy task with a belly so large I already couldn’t see my toes when I looked down. I tried as hard as I could not to love that tiny life inside me, to forget that she was there, but her constant and insistent movements were a daily reminder of her presence. It was those same unrelenting movements, demanding my attention, which left me with a glimmer of hope. Could a baby with no hope of life possibly be twisting, turning, and kicking, day and night, like a circus acrobat? I decided to name my little girl Mikaela Hope, for that was exactly what I was holding onto – hope.
The labor was incredibly long and arduous. I refused all pain medications, as I wanted to be fully aware of my baby as soon as she found her way into the world. She survived the ordeal but was immediately whisked away to the Neonatal Intensive Care Unit. It would be several hours before I could see her. During that time my brain wrapped itself around the memory of her first cry, knowing that one small sound carried all the hope I had dared to hold onto these past months. It was during the early morning hours when the nurse wheeled me into the NICU to meet my little Mikaela Hope. Although the doctors were still unsure what was wrong with her, she was doing quite well. She had packed down her first bottle like a champ and had her first bath, and her vital signs were good. She was handed to me, wires, tubing, and all, and I took her into my arms for the first time, thinking how wonderful and “right” it felt for her to be there, as if my arms had been created specifically for the purpose of holding this precious baby. It was at that moment that I fell deeply in love with this tiny creature I had tried so hard not to love. It was at that moment I knew that I would do anything and everything in my power to make her healthy and give her the happy life she deserved.
About four days after her birth, Mikaela and I were released from the hospital with a tentative diagnosis of Klippel-Tranaunay Syndrome, an extremely rare vascular disorder virtually unknown to the medical staff at Dartmouth. I brought Mikaela home happily, yet nervous and scared of the unknown. I knew nothing about this disorder and, apparently, neither did anyone else. I vowed to learn as much as I could so that I would be able to make the best decisions and get her the best care available. For one blissful day and night I held Mikaela every minute I could, simply breathing in her baby scent and studying her delicate face as she slept peacefully in my arms. The following day she suddenly began screaming as if she were in pain and developed a fever. Before I knew it, we were back at Dartmouth. After hours of testing, it was discovered that Mikaela was probably bleeding internally, an unfortunate effect of her vascular disorder, and her red blood cell counts were dangerously low, while her white cell counts were through the roof. She was admitted to the Pediatric Intensive Care, and I proceeded to spend a long, sleepless night holding my little angel as seemingly endless amounts of blood were transfused into her deathly white body. I hardly noticed when the sun finally rose on a new day. There had been a slight improvement in Mikaela’s condition, but only very slight, and a long day turned into yet another sleepless night. I soon had little concept of what day or time it was, where we were, or who the constant stream of medical staff were who came in and out of the room. After Mikaela took another turn for the worse, we were transported to Children’s Hospital Boston. I was desperately attempting to keep myself together at this point, even as the tears continued to flood my cheeks, and my shoulders ached with the gut-wrenching sobs.
It was in Boston that Mikaela and I met Dr. Fishman, the country’s leading authority on KTS. Finally, someone who actually knew what was going on and could save me from this nightmare! It was here that Mikaela received the official diagnosis of KTS. This god-like being was there to give me the smallest miracle – answers. Dr. Fishman sat down with me and explained that while this condition would be life-long, there are treatments available as she gets older – there is hope. She would have to be monitored, and she will have hurdles and challenges to face, but – there is hope. I went to the dark, depressing, cell-like room made available to the parents of patients, and I slept. I slept for the first time since my daughter was born and found that I had no tears left to mask my pillow. My head found comfort in sheer exhaustion. After several days in Boston, Mikaela was deemed stable enough to return home. I was a bit nervous at this decision. Was she really well enough to go home again? A part of me wanted to beg them to keep her another day, perhaps another two days, just to be sure, but return home we did.
Perhaps it was “mother’s intuition” that had nagged at me from the moment I heard the word “discharge,” but there was certainly a part of me which worried that all was not as it should have been quite yet. That part of me proved to be correct. Less than two days home from Boston and it began again – the screaming, the fever. Then it was back to Dartmouth and another blood transfusion. This time we remained in the PICU for a month, until they were absolutely sure of the improvement in Mikaela’s condition. I slept little, I ate little, and I rarely left her side. The nurses would chastise me constantly, like mother hens, that I needed to take care of myself or I would be no good to my child. Of course I knew that they were right, but that never made it any easier to take my eyes off my baby girl for even a minute. I would simply hold her and rock her for hours at a time, singing her every lullaby I had ever remembered hearing. During her wakeful times we would just sit and gaze into one another’s eyes, as if the answers to all of life’s questions lay right there for both of us to grasp onto. It was in these moments that I knew we had a long road ahead of us, but we would guide each other through it. In these moments we formed a bond that would be far stronger than the steel bars of her hospital crib. Each time Mikaela’s eyes met mine she seemed to be looking into my soul, reading my thoughts, and understanding it all.
We finally reached an impasse and I was able to take my daughter home, but our journey had only begun. For many months little Mikaela grew and thrived and was a happy, delightful baby girl. Two weeks before her first birthday, she became seriously ill with the H1N1 virus – swine flu. Within 48 hours she was so severely dehydrated, we found ourselves in the PICU at Dartmouth once more. She recovered slowly and was left in such a weakened condition it would be more than a month before she would even be able to sit up again, much less return to her normal, playful self. She would be nearly a year and a half old before she would finally be able to walk. No sooner than she began to take those first tentative steps, she was off and running and nothing was ever going to stop her again. She reminded me of a baby bird that had been trapped in its shell for so long, pecking away, one tiny crack at a time, then finally breaking free.
Mikaela is now a beautiful, charming, precocious toddler. She has already lived a lifetime in these two, short years, facing challenge after challenge. Not long after that devastating bout with the swine flu, we were abandoned by her father. By spring, she had been diagnosed with severe asthma. A year later Mikaela would be forced to wage yet another war against KTS. She would bravely battle a fight against her own blood cells, enduring three more transfusions over a period of nearly as many weeks. Through her fear and her pain I sat at her bedside, trying to gather strength to equal her own – all the while cursing whatever forces had inflicted this innocent child with such a vicious disease. In spite of the frequent medical appointments and daily medications, she continues to face each day smiling, laughing, and making my world a brighter place. Throughout everything she has already faced, and must continue to face over the years to come, she has had an inner-strength that I have never seen in anyone. I have become a stronger person in my own right, in the hope that someday, somehow, I might be her equal. I know that I shall never cease to be amazed by her, and I will forever be grateful to have been blessed with this perfect angel. Last month, Mikaela’s diagnosis was changed to CLOVES Syndrome, because of her trunk involvement and other symptoms.
I look at her exquisite little face, and it reminds me of a delicate, porcelain doll – the red, heart-shaped mouth; the lushly-lashed, sparkling blue eyes; the fair skin and rosy cheeks that dimple to perfection when she smiles; and the softest blonde hair that shines in the light, framing her small face like the sun itself. By all appearances, she is so sweet, innocent, and fragile, you would want to place her high up on a shelf, out of harm’s way. Few people realize that behind her delicate, porcelain exterior lays the heart of a lion. She is not just my precious, beloved daughter - she is my hero. She is my Hope.