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“Corbin is a fighter, he is my miracle child, and he is my hero.”
Corbin McHenry, Robertsonian Translocation Full Trisomy 13, 4/4/2013 – 8/17/13, Havelock, NC
It all started out like a relatively normal pregnancy. A positive test and five more positive tests (we couldn’t be too sure), a visit to the doctor to confirm, and the start of a beautiful life. Ultrasounds revealed a large… cyst on my right ovary which forced us to attend bi weekly and sometimes weekly appointments to check the cysts progression. We didn’t mind though because this allowed us to witness the growth and changes in our beautiful baby right before our eyes.
Weeks past and the battles began, Corbin or Jaxson, Autumn or Cadence, soccer, football, or dance. We hoped and prayed for a baby boy but said we’d be happy either way. But at week 16 an ultrasound answered our hopes and prayers and we could expect to hold a baby boy in our arms on May 26th 2013. We were thrilled! But the debates continued; Jaxson or Corbin, Soccer or football, sweater vest or overalls, public school or private, and the list went on. But after little discussion our decision was final, Corbin Alfred McHenry he would be and what a perfect name it was.
After a few more weeks our doctor sent us to a high risk specialist. Our initial thoughts going in were focused on the cyst on my ovary, which had grown in size, and the chance they may have to remove it while Corbin was still in utero. However, that appointment took a much different route. After a two and a half hour anatomy ultrasound we were sent into a back office. A doctor came in and explained to us that our beautiful baby boy had what they call “soft markers” on a few organs in his body. He explained that these markers were thought to be associated with Down Syndrome, also known as Trisomy 21. He asked if we’d like genetic testing.
Soft markers? Down Syndrome? Genetic testing? We were confused and our hearts were sad. We discussed the tests and decided to go ahead with the MeterniT21 blood test. This test would reveal an answer that was 96% accurate. No result would change our love or care for our son but we wanted to prepare ourselves for whatever may come. So we waited ten agonizing days and finally I received a call. The nurse started out by telling me that Corbin did not test positive for Down Syndrome. My heart sank, my eyes filled with tears and I was overjoyed But my joy was short lived. She went on to say that he did test abnormal for something called Trisomy 13. The nurse explained Trisomy 13 as the presence of an extra thirteenth chromosome, three instead of the normal two. Well much like anyone else I thought, “Great extra! Extra is good, it’s better than a little or too much” but I was wrong.
I quickly got off the phone and researched this “Trisomy 13” and my heart instantly sank. Words like “severe mental retardation”, “death before age one”, “physical abnormalities”, and “incompatible with life” began to flood my screen. What was going on with my baby boy and what caused this anomaly? I called the doctors back and scheduled an amniocentesis. Again, no result would change my decision to carry to term, no result would change my love or care for my son, but we had to know what we were up against; I couldn’t sleep at night on a 96% chance.
A few days later we received the amniocentesis. We waited fourteen more agonizing days and finally a call was made. That call confirmed our worst fears, Corbin has Trisomy 13 and this was 100% clear. We didn’t understand why or how, the causes, the effects, the reasons, or the medical literature but we were determined to understand it one way or another. We reached out to support groups, family, friends, internet sites, medical journals, neonatologist, and we started understanding the diagnosis more and more. It was fatal, he was not going to live, and the reality was crushing us.
Our doctors in Greenville, NC only believed in palliative care, something we had no interest in. We wanted to give our son every chance in the world and we had read the literature enough to know there was hope! So the search began for the perfect hospital and the best hospital. We came across CHOP, the Children’s Hospital of Philadelphia and we were impressed. The top children’s hospital in the country, Corbin just had to be seen there and we’d do anything to insure that! I made call after call and Corbin’s case was accepted immediately so our move to Philadelphia would begin. We packed up the house, said our goodbyes to friends, and arranged the paperwork.
We stayed few weeks in New Jersey with my aunt and attended appointment after appointment, setting up birthing plans, and just awaiting the arrival of our baby boy. I began having severe swelling and other medical issues so we drove to CHOP to get a quick exam. I was admitted immediately with high blood pressure, protein in my urine, and severe swelling; I had preeclampsia and Corbin needed to get out soon. I was in a daze, they couldn’t take my baby out now, he was only 32 weeks and the odds were already against him due to this genetic anomaly. We called our families and they rushed to the hospital. By the end of the second night there was talk about sending me home but after a half an hour the doctors decided an emergency C-section would need to be done and quick. Corbin wasn’t reacting well to natural birth and my preeclampsia had me at risk for seizures and stroke. So thirty minutes later I was rushed into an operating room. All these thoughts flooded my head. We were already prepared for the reality that at full term he might not make it but at 32 weeks, what were his odds? We were prepared by doctors earlier that day, that our son would probably not make it out alive, he would not cry a first cry, take a first breath, or get the chance to move his tiny fingers and toes. This reality bared hard on me as the doctors started to perform the c-section. With my husband and mother by my side we waited and I prayed. For the first time in my life I had to believe in a higher power, for the first time in my life I caught myself praying aloud that my baby boy would cry; I just wanted him to cry. Sure enough, on April 4th 2013 God answered my prayers and at 9:53 pm Corbin Alfred McHenry at 4 pounds 4 ounces and 17 inches long was born breathing and crying.
He was breathing on his own for the first hour of life and he stunned the doctors! After an apnea spell in the elevator on his way to the NICU, Corbin was intubated. My baby boy already defied the odds and I couldn’t have been more proud. After many exams, we were amazed and I truly believe God had everything to do with the doctor’s findings. In utero Corbin was diagnosed with a small cerebellum; they said he would never eat, breath, talk, or walk, he was diagnosed with his heart in the center of his chest, his heart may not beat out of utero they said, he has severe rocker bottom feet, they’d require surgery they said, his kidneys were too abnormal, they wouldn’t function without me they said. But ultrasounds and exams revealed that Corbin, in fact, had none of these problems. His brain is structurally perfect, his heart is right where it should be, his feet are slight rocker bottom but precious, and he pees like a champ.
However, Corbin’s doctors did reveal an ASD and PDA. At a month and a half old the doctors scheduled a heart cath to fix Corbin’s PDA. To their amazement though, there was nothing to fix, in just five short days Corbin’s PDA had closed fully. The doctors also noticed that Corbin had a narrow airway and a mild case of a floppy airway. So at almost two months old Corbin entered the operating room again and a trach was placed along with a g-tube. Corbin seemed to progress. He was weaned to an LTV and was stable enough to be transported to a hospital back home.
After three short weeks and a triumph over a battle with phenmonia, Corbin was transferred to a Transfer Care Home unit. He decided he was not ready just yet but that is OK because we will give him all the time in the world.
Currently Corbin is at the PICU and is 78 days old! We celebrate every day of life and every and any progress he makes.
This way of life may not be ideal for some people and others may choose a different route but this is the route we chose and this is Corbin’s fight. Corbin continues to progress daily and sometimes he has bad days but he’s a fighter and he stays strong. He has won the hearts of his nurses who compliment his long brownish red hair, tiny toes, and chunky cheeks. He receives the prayers, positive energy and support from people all over the world. Most of all he is our world. Corbin has taught me more in these 78 days than I could have figured out in a lifetime. He has taught me the definition of love, strong will, compassion, and life. He has brought real meaning to the phrase “it’s the little things in life”. And he has shown me the importance of life and what truly matters most; soccer or football, public or private, sweater vests or overalls those things just don’t matter. What matters is how many lives you can touch, how many people you can change, how many odds you can defy, and how much your life impacts the world. Corbin is a fighter, he is my miracle child, and he is my hero. Thank you “Corbs” for teaching me what I one day should be teaching you! Mommy and daddy love you, keep fighting your fight♥